The Silver Lining

Final Post

2010-09-26T20:09:00.000-07:00

To anyone still checking this blog for updates, I apologize. I am not better, but I don’t think I am worse. I’ve mentioned here before that the gradual course of this disease makes for tolerable living, but uninteresting reporting. Consequently, I plan to make this the final post on The Silver Lining. I have enjoyed having this outlet, but I think that any future posts will be to my “Share Time” blog; I don’t feel the need to separate my blog lives any more.

I will report that my upper right arm in almost completely healed. I don’t know what that was about, but it was over a year ago that it began to be aggravated and then in October 2009 I really hurt it on a fall. I am glad it got better.

I can also report that while my voice and vision aren’t really “better,” I have grown accustomed to the limitations so they do not seem as bad. I get tired of it, but you get used to it.

A good example of this is manual dexterity. A couple years ago I started asking for help doing the little buttons on my shirt cuffs. I would maybe try to do it myself three or four times and become exasperated. Today I rarely ask for help; not because my coordination is improved, but because my patience is. I mean, maybe there has been some healing but I think it is more due to acquired persistence. I may try the same button 15 times and I rarely become flustered enough to ask for help. I’ve learned various approaches to cuff-buttoning. And if #15 fails, I try #16.

Today in church we sang one of my favorite hymns, “Lord I Would Follow Thee.” As I mouthed the words, I was impressed that different lyrics of that hymn have stood out to me at different times in my life. Seven years ago while presiding over the Elder’s quorum, the words “I would be my brother’s keeper, I would learn the healer’s art” resonated with me. I so wanted to learn that art. I would be a healer. Would that I could follow the Lord’s example!

Five years ago when I went to New Orleans to help with the hurricane relief, I heard the words “Pause to help and lift another.” Then in the early day’s of my MS trial, the words “In the quiet heart is hidden sorrow that the eye can’t see” stood out. Not so much because I now had a burden that was largely invisible, but because it helped me to realize that many people have them. And they are worse than mine.

Today I was touched by the words “Finding strength beyond my own.” Yes! That is what I have experienced with my Sunday school assignment, and what I still crave from time to time. The fatigue can still really level me and I need to find strength beyond my own. I am confident that following Him is the only way to find it.

Avoiding Misery

2010-08-09T14:07:00.000-07:00

This morning I noticed the Les Miserables songbook on the piano. I used to love sitting down to the piano with that book, but MS Dave doesn’t play much. Why not? Well, my manual coordination is a little off and there was a time when my vision was impaired enough to make reading sheet music very difficult. But my vision is a lot better now. Why not give it a whirl?

As I began flipping through the pages I remembered that for most pieces I only played the chords anyway, so I should be able to do that OK. It was a little labored but at least I could do it! Then I remembered the other reason that I don’t frequent the piano often – voice. I don’t play very well anyway, but what I loved to do was sing. That was what made the chord progressions tolerable. I forged on anyway. I was playing “I Dreamed a Dream” and was just imagining my voice. At a part in the middle the melody vacillates within my narrow range so I tried it. Although it was just a shadow of my former voice, it was on pitch and I sang! Well, for a little bit.

The other problem with that song is it is depressingly nostalgic. The lyrics were making me sad, so I stopped playing. I don’t need that. I had other stuff to do that wouldn’t bring me down. Wistful and sullen don’t do anyone good.

Out of the mouths of babes

2010-07-24T20:55:00.001-07:00

I was in California last week visiting my parents. Fortunately, four of my siblings were also visiting so I got a good dose of family. I enjoy watching the kids play. I don’t say a lot because it is still hard to talk much. I am cognizant that I risk being the freakish uncle that walks slowly and talks softly, but what can I do? I try to put the kids at ease, and I even had a brief chat about my health with two nieces that were curious why I talk the way I do.

After several days, my 4-year-old niece took a break from her game of croquet, approached me, and said, “Uncle David. I think…you…are nice.”

Answers to Questions

2010-06-27T21:39:00.000-07:00

Answers to questions

My brother’s wife raised a series of interesting questions for me to address in this forum. I hope the answers are insightful.

1. If you could eliminate one symptom, which would it be?

Mouth-watering question, but I think I would want my voice back. I don’t mean to sound ungrateful; I still can and do communicate verbally, and I can even sing a little, but if I could have my full voice back there is a chance that I could work, at least part-time, and I could sing again to my baby. You know, it is so pathetic: last month I took my PC with me to tuck her in and I played “Edelweiss” on iTunes for her. (At 11 ½, she’s rapidly outgrowing shenanigans like that.) Maybe it’ll be back for my grandchildren.

2. Do you look at people with disabilities any different now than you did before your illness?

Totally. If they obviously “have” something, I don’t hesitate to ask. I understand there is absolutely no shame in it, and they are probably eager to explain. And they are probably wondering what my problem is too.

I used to wonder when I saw people park in the handicap spaces and then just walk from their car. I don’t do that anymore, because I know that sometimes you park in the handicap spot no so much for the walk into the store when your legs are fresh, but you know that when you return it might be pretty dicey. (Most of the time I don’t need to use the spot, and I don’t.)

3. How has your perspective on enduring to the end changed?

I don’t know how to answer this question. It isn't that getting through every day is just so difficult. It's not. Yes, there are rough spots each day but I'm not in pain and for the most part I mostly think about that things I need to get done that day, not endurance per se. Having my health compromised I am much more appreciative of the health I do have and of life in general. I am not trying to side-skirt the question, but I don’t think I have any useful insights here.

With respect to "the end," I sometimes get the sense that, because of how I sound, sometimes friends believe I might be on death's precipice and say something kind to me just in case. And then I don't die for a long time. That is weird. (I'm sorry to disappoint them, but I'm glad too.) I mean, they don't want me to go yet, but it would be ideal if I ever had some dramatic improvement to accompany me, but week after week, I am about the same.

4. Do you live your life with hope of a cure or remission or is it easier to live your life assuming this is will be with you for the rest of your life?

It is kind of a balance. You have to have hope, even though I realize that I may never be restored to full health. I have hope with every supplement I take and with almost every meal I eat. Although with some meals you (and my nutritionist) would think “OK, he’s given up.” But I haven’t. I am getting used to it but I am not resigned to it. Does that make sense?

5. You've mentioned depression as an issue with this illness. Has that gotten easier to deal with or is that a constant battle?

It has gotten easier. I have found that I am much better at living with a limitation than getting one. Back in ’07-’08 I think it was more than just getting a little down, there was something in either the disease or the meds that was really wreaking havoc. But I have learned that the less time you spend thinking about yourself, the better off you’ll be. It is still a challenge to fill my days with constructive activity, especially when a wave of fatigue levels me, but I’m getting better at it. I am nowhere near as volatile and moody as I was in the past.

Favorite sister-in-law? There is no way to answer that on any objective scare; O just love all seven of them!

What if

2010-06-13T13:25:00.000-07:00

My brother asked me to consider, and then report on my blog, what I would do first if I awaken one day and my symptoms had vanished. My initial reaction was “Go back to work” which I know is unsensational but it would be a top priority.

I’ve given it some thought, and I guess my first action would be to ascertain if indeed I was still living. I am certain that death will cure me of MS, and I would somehow try to see if that had happened! Assuming I was still living, I would awaken Kara (which might end my life anyway) and I would talk a lot.

Resuming my employment, or seeking new employment, would be the overarching priority, not just because I love to work or I feel there is a spreadsheet out there waiting to be created or data in need of analysis. There would be an economic urgency, as my disability pay stops when my disability ceases, but that is not the main reason either. It is just that over the last 2 ½ years as I have been unable to work, there has been a domino-effect on my self-esteem, my relationship with Kara, and with my children. I would be eager to reverse that fall-out if I could.

Assuming I had done everything I could on the employment front, and I was going back to work tomorrow, I would offer to resume bedtime stories to Natalie, I would sing with Erika, I would call my parents and all my siblings, I would call a few friends, and I would sing some more. A lot. I would be so annoying. (There might be some new fall-out.)

I like to think that I would first offer a prayer of gratitude, but in truth, I thought of all that other stuff first. I guess I would be like one of the nine lepers.

I would love to resume tennis and I would start running. Maybe train for a marathon. Or at least a 10K. Or a 5K. (Do they have 3Ks? You know, just to get you started? Presently I would really struggle to complete a 1K.) I would learn to wrestle. I would take a trip to Utah to show off for one of my favorite gals. If it were winter, I’d take her skiing.

OK, I am done with this musing. I don’t do it often because I am content with living in the present, and learning to live with my limitations, but I guess it doesn’t hurt to dream every once in a while.

Dreaming

2010-05-31T09:12:00.000-07:00

In my dream last night I was frustrated that some of my friends we're singing, in parts, but I couldn't join them because of present vocal concerns. This isn't the first time that Dream Dave had to opt out of activities because of limitations. A few weeks ago I dreamed that my brothers invited me to join them in a soccer game, but I had to decline. What were they thinking? I'm no good. I can't run. But wait...it wasn't until I awoke that I realized Dream Dave can do it - he can do anything. He runs real fast without tiring, does bicycle kicks, and scores every time. And he can sing too! I've got to figure out how to confine my nightmare to waking hours!

Megabite

2010-05-21T10:13:00.000-07:00

It is called pseudo bulbar and it is a subtle yet terribly frustrating MS symptom. I’ve referred to it before as “loosely tethered emotions” which means it is difficult to stifle a snicker or sob. The former is much more problematic, especially when disciplining teenagers. If their response is 99% defiant and 1% ridiculous, I giggle. Kara says, “It’s not funny!” and I agree, but I can’t help it. Well, maybe I can but I don’t know how to do it.

I learned one way to control it last night. I attended Ryan’s choir concert at the high school. I was alone because Erika also had a concert at the same time. The lights dimmed and the first number began. It was a group of girls completely devoid of my progeny. However, from the opening chords I was struck with the thoughts, “Amanda used to sing here” and “I really miss her.”

These are reasonable parental thoughts but with my condition, I could not afford those thoughts. As my lips began to quiver I quickly tried to think of something else. Baseball. The Angels are in Chicago tonight. Well, all but one; one is in Provo. Cue wave of emotion. C’mon, pull it together man. Pay attention to the number; these girls are singing well. I mean, it might be better with….dang it. You look like a freak, sitting alone starting to shudder. You’re going to have to walk out if you can’t control it. I bit my knuckle. It hurt but it was working.

I am happy to report that I was able to stay composed and enjoy the concert, my finger is still intact, and that Ryan was amazing!!

Signs

2010-05-10T17:56:00.001-07:00

Positives

· I had my semi-annual visit with my neurologist a few weeks ago. I was glad to see that I had gained five pounds and she said that my walking is measurably improved (but still kinda bad.)

· Guy at church said I look healthier, asked if I was feeling better. Dry-cleaning lady made a similar observation

· I have been down to ½ a sleeping pill for a few weeks now

· Right arm has been steadily increasing mobility. As a segue into the negatives, I was showing off the improved right-arm mobility to Kara as we were walking through a parking lot and I was made to learn that she does not appreciate public displays of mobility, especially if they appear to be of a Nazi persuasion.

OK, now the real negatives

· A.M. re-entry is still pretty bad; worst 20 minutes of the day. I have to stretch a lot and my body just kind of shudders for a few seconds.

· I still can overheat easily and I need to be careful. It was warm out Saturday and I tried to be a hero and that isn’t good. I did walk around the block last week, and though the last little stretch (3-4 homes) was difficult, It has been worse!

· Voice isn’t worse, and maybe it is a little better than six months ago, but it is definitely still bad.

I won’t go into every symptom but suffice it to say that overall, I’m OK. Some things have definitely improved and others are definitely worse. (See why I don’t update this blog very often?)

Baby Steps

2010-03-27T09:37:00.001-07:00

Last night as I lie in bed I realized that it has been a couple days now since I have had an afternoon “ultra tired” spell. That is good. And then this morning as I was going upstairs, I was feeling relatively steady so I decided to try it hands-free. (Truth be told I had a sugar wafer in each hand.) I know, that isn’t on my diet but I made it to the top with no major issues.

In fact, I was feeling so good about the ascent, I considered trying to come down without the handrail. This is more difficult, and potentially more dangerous. It is the difference between falling down the stairs and falling up them. I had nothing in my hands so I figured I’d just quickly grab the rail if anything misfired. After a minor false start, I stepped with my right foot onto the first stair. My left foot quickly followed. I’m good! I could do this! The problem was having each foot stop on each step was going to take forever, so I cautiously tried normal steps. I wavered a little but bottom line is I made it without touching the rail!

Small victories!

Anne Marie

2010-03-24T10:14:00.001-07:00

While working with some old census records, I came across the name “Anne Marie.” In 1910 this was not an uncommon name, although usually the second name is not spelled out.

I was reminded of a girl named Anne Marie in my 3^rd grade class. I thought her name a little strange for a contemporary. She was a little overweight and she wore glasses that seemed large. She was very self-conscious. I was never mean to her, but certainly never did anything particularly kind for her.

The most vivid memory I have of Anne Marie was on Immunization Day; shots to the upper arm. We were all a bit nervous about getting a shot, but as a few of us waited in the nurse’s office, Anne Marie became disconsolate. The nurse was kind but a little brusque. Anne Marie cried a lot. And it was the unflattering type of crying. She was wearing dark red polyester pants and a white shirt with maroon flowers. I felt bad for her but, c’mon, it’s just a shot. I was not excited about it either but I was not going to embarrass myself. She even cried for her mommy, who, doubtless was the originator of the crimson ensemble.

As I recall the scene now heart aches. Poor thing was terrified. It’s not fair now because I can now see an 8-year-old girl through the eyes of a parent. This girl that to me was defined by a double name, extra weight, glasses, and polyester was something entirely different to her parents. I’m sure she was their prize, the most special and beautiful soul. They gave her the most beautiful name they knew and dressed her in the cutest clothes they could. Who was I to look at her with the slightest bit contempt or maybe worse, indifference?

Even more than having parental perspective, I understand the nature of fear a little better. This fear was a little irrational but rationality is not a fear prerequisite. Anne Marie didn’t care if we saw her cry. She didn’t care that a boy in the room thought her plain or thought her glasses were large. If I could go back in time I would not care so much about some things either. I would maybe have sat down next to her and said, “It’s OK Anne Marie. Cry if you need to, but everything’s gonna be OK. Your friends are here. We’re all a little scared but it’s going to be OK.” I could have even taken her hand and said something to take her mind off the shot; maybe compliment her outfit.

But I can’t go back. All I can do is be a better comforter today. I just hope that I can recognize the Anne Maries in my life today.

Swing Low

2010-02-23T09:15:00.001-08:00

I have been a little encouraged by my voice lately. It is still bad, but I think it is better than a few months ago. I never am really sure though because as I have reported here before, as I get used to a limitation, it seems to be less severe, even though it may be unchanged. There just aren’t many objective measures. On the phone Amanda commented that my voice sounded better and I did place a successful drive-thru order.

With this backdrop, a couple weeks ago I got a cold, which is no fun, but it did yield a dramatic (albeit temporary) improvement in my voice. It was real low, but it was there. The first morning I was in the kitchen with Kara and I said something. I sounded like Barry White but it was so strong! Kara said, "Hey, you have a voice!" I agreed and chalked it up to the cold and reflexively went back to my study. Then it hit me: I can be heard! I was kind of like a kid on Christmas morning. I mean, I can be heard every day but this was different; I had a little power! As I considered how to spend my vocal fortune, I couldn’t help but do something a little sappy: I went back to the kitchen and told Kara that I loved her. She thought it was sappy too.

Next I called my friend who does not hear well. We haven't spoken for months because it is just too hard to communicate. He could hear me now; it was so awesome. We talked about his health and made lunch plans.

Next I called parents, mostly to show off. Speaking was still a little difficult, but I was getting way better results for the effort. I was humming and stuff all day long.

The cold is gone, thank goodness, and the deep bass voice too, but it was nice while it lasted!

Good and Bad

2010-02-02T08:40:00.001-08:00

The Bad: I had a fall last week. I was at the mall with my parents and I had left them in search of a restroom. The mall was essentially empty and I guess I didn’t quite lift my right foot enough to shuffle over the polished floor. Stick. Stumble. It wasn't pretty; I think I resembled an octopus falling out of a tree. Some kiosk guys did see it, and asked if I was OK. I was fine. The good thing is that I didn’t injure myself and although I did feel a twinge in my bad arm, it doesn’t appear to have set me back at all.

The Good: Maybe, just maybe, the ol’ voice is starting a gradual improvement. Last night at FHE I sang about 80% of the opening song. And maybe 30% of the closing. Now, I didn’t sing well, and my range is still less than an octave, and really bad, but it was better than a year ago. It is still a pain though. And like a lot of things, I’m never sure if it is really an improvement or I am getting used to it and learning “work arounds” so it seems better. I’ll keep working it.

Bad Wing

2010-01-20T10:02:00.001-08:00

Back in October I reported trouble with my right arm and that dreadful fall. Since then especially, I have really been favoring it. The arm works fine (and without pain) when it is employed at chest level or below, but I cannot really raise it.

The small things you’d never think of are perhaps, the most taxing, like washing your hair. For months now I hold the shampoo bottle in my left, squeeze a dollop into my right. Put bottle down. Transfer shampoo to my left and lather one-handed. Kind of a pain but it doesn’t take much ingenuity and beats the alternative of being icky.

Every day I spend some time doing a homemade rehab, and have found that it is slowly getting better, I think. But this morning I reached a measurable little milestone: two-handed lather! Aah, felt good.

I’m on the mend!

Reloading

2010-01-11T07:56:00.001-08:00

It has been a long time since I have posted anything meaningful on this blog. I often consider officially taking this blog down since I update it so infrequently. But I don’t because I don’t know when insights will hit me or new silver linings will become manifest.

I don’t know when, or if, a remission is pending, but it does seem that my condition, for better or worse, is destined to change very gradually. What that means in “blog-speak” is “boring.”

I mean, I do have stories of near falls, fun with sleeping pills, and how frightening bleachers can be without handrails, but none of these anecdotes have much redeeming value.

In my Sunday school teaching odyssey, I was so relieved following my December lesson. I was done! I had made it! I had completed the nearly impossible! They couldn’t continue to supplant Gospel Doctrine lessons and they wouldn’t seriously ask me to keep teaching. I learned a couple of weeks ago that, yeah, they can, and yeah, they will. So I taught again on January 3 and the worst part was the concern during preparation. I really dreaded teaching again. But I can’t ask for a release. It seems so spineless.

Two cool things stand out to me about last week’s lesson.

Although I don’t think it was my best lesson, parts of it were. Absolutely were. During preparation I had a distinct prompting to look something up, so I did, still kind of unsure how it would fit in the lesson. Then during the lesson a situation unfolded where that preparation was precisely the right thing to say at that moment and it was incredible. Hearts, including mine, were moved deeply.
I found that my voice does much better at 10:15 a.m. than at 2:15 p.m. Don’t get me wrong; it is still borderline atrocious, but no mike and no slurring. On a scale of 1 – 100, it has improved from a 6 to a 9. Maybe. We’ll see on Feb 7.

Legal Ads

2010-01-05T10:58:00.001-08:00

(this was posted originally a week ago but because it got some unwanted spam in the comments, I deleted it, added comment moderation, and I am re-posting it)

I was watching a football game with Ryan and a Legal ad came on and asked: “Did you take (drug X) before 1992 and now have (medical problem Y)? If so, you may be entitled to financial compensation.” I told him that I was waiting for the ad that says, “Did you eat a lot of Arby’s in 2003-04? The Rueben? Do you currently have M.S. with severe vocal strain? If so, call this toll free number; you may be entitled to financial compensation?”

Or “Do you love little chocolate donuts? Cream Soda? At Tommy’s, did you eat a lot those fiery hot yellow peppers to show of for the ladies and now walk unsteadily? Well, that wasn’t wise, we feel bad for you, and there has been no link proven, BUT if you want to just roll the dice and sue someone, call us.”

The Theory of Relativity

2009-12-21T14:19:00.001-08:00

People often ask me how I am doing. They are both serious and well-meaning, but I am not always sure how to answer. How am I doing – relative to what?

Compared to my worst periods with MS, I’m doing fabulously! In fact if I consider that my future may hold debilitating paralysis, immobility,and an untimely demise, then I am doing wonderfully today! (This creates a curious inverse relationship between optimism and state of being.)

But if the benchmark is a normal 44-year old man that can work to provide for his family, that can run up the stairs, and sing Christmas carols if he wants, then I’m doing poorly. Quite poorly. I can’t afford to use that benchmark.

Silence is Golden

2009-11-17T18:40:00.001-08:00

So I've been thinking: on most days my health condition is relatively stable, which makes for peaceful living but poor blogging. I try to come up with insights, but often there is nothing that I haven't already shared. There are still challenges but nothing really new or interesting. I strain to see signs of improvement, and I do see them but they are so subjective and pathetic that sharing them would only serve to heighten concern.

So I end up writing nothing. Forgive me. If things go south I promise to report them here. Or if things turn sharply north I'll report it. If there are no updates, assume that everything is either stable (or gradually improving.) When I hit a measurable milestone, I won't be shy about it.

Exquisite

2009-10-20T15:15:00.001-07:00

Warning: long entry ahead and reader discretion is advised.

Over the past few years, I have been hyper-sensitive to any little ache, pain, or discomfort. Almost always, the problem disappears as stealthily as it came. However, for the last several months I’ve been having increasing pain in my upper right arm. At rest, it is completely pain free, but if I use it wrong, look out. Actually, I first noticed this pain while descending to the pool equipment area a few months back, and used my right arm to steady myself against the fence. I might have been a little wobbly that day, and relied more upon the right arm than usual, but whatever it was, I received a sharp rebuke from the back of my upper arm.

I don’t think it is a symptom of MS. I think it is some sort of a wicked muscle strain that has resulted from awkward exertion and constant bracing. Over the last little while, it seems to be getting worse. The smallest things can set it off: pulling up the bed sheet from the wrong angle, reaching for the bar in the closet too quickly, turning on a light switch as I hastily amble by…I am confronted with about five seconds of searing, soul-shattering pain. I accept that I have a relatively low pain threshold but, wow.

I am growing accustomed to using my left arm for a lot of things -- good thing I am left-handed! My chiropractor tried giving my neck an adjustment. No improvement. My neurologist suggested stretches. No improvement. I think I need to try a physical therapist.

If you are still reading, you must be one of those people that have to look as they drive by an accident scene. You don’t want to see anything gory but you are somehow viscerally compelled to look. This story got worse this morning. Around 7 a.m., I was returning to bed after using the restroom. Ordinarily I would stay up but the sleeping pills I had taken were still weighing heavy on me. I was a little off-balance and insanely groggy so I thought I’d try to sleep for another hour. I sat on the edge of our elevated bed, leaned back gingerly before swinging my legs in. I swiveled and threw my legs up and I immediately had a problem: I was not on the bed far enough and now I was helplessly falling off. Fortunately I was able to avoid the nightstand and suffered no injury from this short fall, except one thing. I had reflexively attempted to stop my fall by using my right elbow as a brace. If I could have screamed, I’m sure I would have. This was without question the most pain I have ever felt.

Kara got up and asked if I was OK. I don’t say this flippantly when I say that I could not answer. I was in such pain that I could not will myself to even begin an answer. She asked again, “Are you OK?” I shook my head no and began sobbing. She didn’t know what to do. I didn’t know what to do. The worst pain I have ever felt and this time it was longer than five seconds and is was not relenting. I broke out into a cold sweat.

I tried to speak again but couldn’t. But what could I say anyway? Call 911? And say what?, “My husband’s arm is really hurting him, but there is no outward sign of trauma.” They would probably tell her to take me to a chiropractor or do more stretches. (And that I’m a big baby.) She needed to start her kid-rousing so I composed myself a little and said, “I’m OK.” It was a total lie but what could she do?

Well, time (and Advil) helped to temper the pain. I’ve been extra careful all day. I even took my turns in Facebook Scrabble using my left hand. I’ve had several hours to reflect upon today’s bad start and here is what I have:

I didn’t know that you could feel such intense physical pain without going unconscious or at least going into shock. (I may have been in the early stages of shock with the sweating. Or I just might be the World’s biggest drama queen. Early stages of shock? Where do I come up with this stuff?)
If there is something to be learned, I’d better learn it well because I never want to experience that much pain again.
I considered how “The Son of Man hath descended below them all” and that the Savior suffered more than we can ever know. Wow. Just one member of my body hurt, I sweated only sweat, and given the opportunity to pass, I would have. I would have flung the cup. My point is not the obvious: that I pale in comparison to the Savior, but rather, how today, more than ever before, I stand all amazed.

Health Update

2009-10-15T18:56:00.001-07:00

I saw my neurologist today. For the third time she drew two little graphs with the lines representing two patterns of disease progression and asked me which on typifies my experience, Like I’ve told her before, it is neither. I don’t think she understands. I told her that I have about 12 different symptoms, and each has a different progression story. Some things have vanished all together. Some things seem to have hit a plateau. Some things seem to be gradually get worse. They’re all different. Despite being puzzled by my manifestation of MS, she prescribed two medications. I don’t know what for. I’m probably not going to take them.

Maybe next time I’ll bring graphs.

p.s. I am up to 166 and she said my hand-eye coordination and walking has improved in the last six months.

I'm not the only one who's changed

2009-09-22T12:37:00.001-07:00

Even though I am grateful for status quo, it makes for uninteresting blogging. I ran across a friend at church that I hadn’t seen in a while. He commented that I am looking better and that my voice seems no worse than it was a few months ago. That’s good, right? Maybe I’ve hit a plateau.

I know that I have re-gained a little weight. Not too much, but I’m around 165. (I used to weigh 200+). Last night as I gave Natalie a little bedtime hug she waxed a bit nostalgic. She said that she missed her “squishy daddy.” Ah, poor thing, but wait, I have a little squish now. It’s just not in my chest where her head was.

She lowered her head from my chest to my stomach and half bent over she said, “That’s more like it.” It then dawned on me that my fluctuating weight wasn’t the problem; it’s my growing little lady.

Nurturing

2009-09-11T09:49:00.001-07:00

People in my ward often congratulate me on my monthly Sunday school lessons. I appreciate their kind words and encouragement, but let’s give due credit to the material itself. The church has developed these very prescient “lessons” that are very useful and relevant. (I put lessons in quotes because they are actually designed as group counseling discussions/workshops.) My fellow teachers are tasked with finding a timely twist on The Word of Wisdom or some other topic that, on average, the students have been taught seven times already. I get to teach from a manual from 2006 and covers things like communication in marriage and instilling confidence in your children. They are “can’t miss” even with my shortcomings as a teacher and my present limitations.

This last Sunday the topic was nurturing children. I will share a few segments of the lesson for those who are interested but could not be there (or were not sitting on the first row!):

We began by reading Ephesians 4:6 (Bring up your children in the nurture and admonition of the Lord) and reading a quote from President Hinckley that outlined the following characteristics of nurturing:

Loving
Teaching
Protecting
Helping
Supporting
Encouraging

The other night my 8th grader came to me with a homework problem:

4 4/7 + (-3/2)

What would you say to that?

I know my knee-jerk reaction is to solve it. Convert it to decimals and do the subtraction. 4.57 – 1.50 It’s easy. My reaction to just about any problem they bring me is to solve or fix it. That is what I do. But is that on the list? Is that nurturing? What would be a better response? (discuss: to assess her knowledge, to teach, confirm understanding, build self-esteem)

This past week we had a good nurturing opportunity that I blew. Amanda, my oldest, started college at BYU this week. I was looking forward to her spreading her wings a bit. Well, long story short, she had a miserable first morning, and was too ill to attend all of her classes. She called Monday afternoon very flustered saying that she could not find a parking place and feared she would be late to class. She was a mess. This was a problem I could not fix and I kept asking her, “What do you want me to do about it?” As I was telling her I could not help her on this one, my wife took the phone and, in soothing tones, told Amanda to calm down, take a deep breath, and to patiently keep looking. She reassured her that a space would open up soon, she still had time, and it would be OK if she arrived a few minutes late anyway. Calming, loving, soothing, supportive. I went back to preparing this lesson. That is what Amanda needed, not my curt “What do you want me to do about it?” She did calm down, eventually found a place to park and a crisis was averted. I’m glad one of her parents has it down.

--------------

OK, back to the blog narrative. You might be thinking, “So you get up there and tell stories instead of teach the lesson?” Well, kind of. Guilty as charged. Although I do stick to the format pretty closely, I am pretty liberal with the stories from my experience as a child or as a parent. They seem to really add context to the lesson.

Guardian Angel

2009-08-29T08:00:00.001-07:00

This morning we had the church cleaning assignment. I love those. I get to rouse the kids early and start a Saturday out right. We always go for donuts afterwards too. Ryan also seemed to be looking forward to it. The girls were OK with the idea too, last night, but his morning it was a little challenging to tear themselves away from their beds. But they did and the four of us made our way to the church (Kara is still out of town.)

Unfortunately, I have to consider my limitations when doing, well, anything, but I could do this. I am feeling a lot better than when we did this last time. This notwithstanding, as we lined up to get our specific work assignments I was secretly hoping for “arrange hymnals.” I did this last time and the nice thing about it is you can sit down whenever necessary. I crossed my fingers. Then I heard the sister ask a pair of 6-year-old girls to do the hymnals. Dang. We should have got there sooner; the competition is stiff for the baby jobs.

They asked me if I would man the big vacuum. Sure, I think. I figured at least it was something I could lean on. It was like a walker with noise! No problem. Well, no problem at first, but as my body temperature rises, my walking skills rapidly decline. I had done about 60% of the job when I noticed that it was getting pretty hard. Just then my “guardian angel” named Ryan appeared. “Dad, I can finish that. Why don’t you rest for a minute?” Whew. You know, I don't think he just happened to wander past. He's always mindful of me, which is a concept that brings me a curious mix of joy and sorrow.

I mean, I loved that he offered, but I hated that I had to take him up on it. Also, I hated sitting on the couch like I was relaxing as everyone was busily cleaning. I know everyone there understands but I wished I had a sign that read “Just cooling off so I can make it back to the car.” OK, that is hyperbole; it wasn’t that bad. How about, “Cooling off but covered by progeny.”

While I sat there, the bishop’s 2-year-old daughter wandered by. She was not cleaning either so I didn’t feel so bad. She was watching her brothers clean the outside of the glass doors; I figured that I could at least keep an eye on her. Probably not necessary but I wasn’t doing anything else. So that is how I spent the last 15 minutes. Many hands make light work and soon we were off to Donut King. Don’t worry; I abstained for my diet’s sake but the kids were well-rewarded. Great morning.

Constitutionally Broke

2009-08-24T12:29:00.001-07:00

Not broken, just broke. I mean by that is that I cannot emotionally afford to do things like contemplate or reminisce very much. One evening last month I innocently strayed a little too far in these waters and the result was not pretty. It was just during a nice moment at our family reunion. Dusk was nearing, the evening was cool, and everyone was gathering for fireworks. I was sitting on the patio just observing. The kids were playing so well. Natalie and Erika especially were in “cousin heaven.” I couldn’t help but consider how fortunate I am to be part of this family. Not bragging but it is basically perfect. Not the individuals, but I am convinced that collectively there is no finer group.

As soon as I had these thoughts I quickly changed my focus to something else, anything else, my sandals, baseball cards, fireworks safety, etc. Whew. That was a close call. OK, who do the Angels play today?

Anyway, my sister sat beside me but she didn’t say anything. I think the silence begged for a contemplative statement. I figured I was safe because I’d already had the thoughts; I was OK. I wanted to say “Sometimes I think we have the best family, ever.” I tried to say it quickly but I was not fast enough. The torrent of emotion surged and completely overpowered me cutting off the last two words entirely. I get so mad at this. My family already worries too much about me without my spontaneous sobbing. I hastily excused myself and walked a few steps away. I covered my face and felt racked with emotion. I cursed myself for this weakness. Of course she followed me, concerned that I was not OK. A brother-in-law noticed the little scene and asked if something was wrong.

It was evidence that they are watching out for me. Heaven forbid there really was something wrong. Had I stumbled or something there would surely be ten hands there to catch me. I do not deserve this attention, I do not want this care, and I hate sounding false alarms like this. Nothing was wrong; just the opposite, everything was so right that, when contemplated just for a minute, the signals in my head somehow got all whacked out.

Today my baby left for college. It is a day just begging for reflection, contemplation and tears. But I can’t afford that. I’m broke. I am home alone today, so no need to worry about a scene, but I just stay focused on present concerns. I knew this was coming and I am really excited for her. She is just going to school. In fact, it will be easier for me to communicate with her now. Maybe I can save up a little composure and cry my eyes out next week but not today.

Going Nuts

2009-08-19T07:57:00.001-07:00

So after a month of eggs and turkey bacon five days a week I wanted to branch out. I know toast is on the prohibited list for me (something about flour being a thyroid stressor) but what about hash browns?

I asked Dr. Ardis and in a display that he’s starting to anticipate possible ulterior motives, he said, “At McDonald’s? No, not OK.”

“No,” I explained, at home, where I actually shred potatoes, brown potatoes, organic turkey-brown potatoes I think.”

He said that would be OK, but that I should fry them in coconut oil. Even though I’d never heard of that, I nodded as if I was an old hand at alternative oils. I didn’t even know coconuts had oil, but sure, why not? If turkey can have bacon…I'm learning all kinds of things.

I secretly crossed my fingers then I timidly asked, “Ketchup?”

He asked, “At home?”

Lesson #8

2009-08-01T21:45:00.001-07:00

So, it is Lesson Eve again. This week I am combining two lessons because the fist one just didn’t have enough traction, by that I mean I just could not glean 45 minutes worth of actionable teachings. Besides, I have five more sessions this year to cover seven lessons.

I will say that I feel very ready this week. I think I’ve gotten past worrying about the voice. The class is used to it by now. I’m sure I will still be a little self-conscious and while teaching I will get a little frustrated but it will be OK. The highlight is sure to be Ryan joining us to do some role-play. He'll be reading a couple of short scripted dialogs opposite a friend of mine.

Health update: Wednesday I began a new treatment. It is a spray called "Metal Free" and is supposed to be very potent at removing metals from your system. I am having a pretty good week diet-wise. I think the doc will be happy. I've eaten no candy or had no soda. For most of today I felt very tired, but not uncomfortable. My biggest stress was getting the lesson finished.

Worlds are Colliding

2009-07-29T14:43:00.001-07:00

I’m finding that my new doctor, the nutrition guy, is not a “hit-you-over-the-head-with-it-granola-zealot”, but he is gradually indoctrinating me. He has me keep a detailed food journal and each week we review it. He highlights the items that he disapproves of and explains why. The list of prohibitions is getting long: sweets, breads, soda, fried or processed food, and even pasta. It’s basically sugars, oils, and grains. (The latter due to FDA-mandated chemical treatments.) Each week I do a little better and get fewer highlights. It isn’t so much that these things are bad for MS, he is just trying to do everything to promote healing from within as he is steadily detoxifying my system.

Today I stopped in for a quick question. Ryan was with me and we were planning on grabbing some lunch afterward. I had an idea: I’d ask his advice on what might be tolerable from the Taco Bell menu. I said “So, we’re going to Taco Bell and…” He cut me off with “No you aren’t.” I asked, “Wendy’s?” He said I should avoid all fast food. What? That is one of the staples in my diet – probably the healthiest. I tried to explain. You see, we are really bad, nutritionally, at our house. If he went through our pantry and refrigerator, he would say “Go to Taco Bell.” The most wholesome and natural thing we have is a box of Good n Plenty. He laughed, “I’m sure it’s not that bad.” Oh, it is.

I went to a movie over the weekend with Kara and passed on the popcorn and soda, but I did indulge in some chocolate-covered raisins and a few Bit o’ Honey. While perusing my food log the doctor asked, (showing his junk food shelter level) “Bit o’ Honey? Is that a cough drop?”

“What?! I thought it was a food group.”

By the way, energy level: better, vision: good (I'm reading a Dickens novel), but the voice is still a disaster. I can go up the stairs without the handrail but not down.

Crawling through Pages

2009-07-19T21:25:00.001-07:00

So, this is my single adult fireside talk I gave tonight, essentially. It is actually a Reader's Digest version. (It might be helpful to read my previous post for more background on this first.) My introduction did include a few words on my background and my MS.

-------------

Let me begin by apologizing for my voice. A few months ago Bev Roberts (former Stake President's wife) asked me how I was feeling. I told her, “A lot better than I sound.” She answered, “Good!” Truth is that my voice makes it sound like I’m WAY worse than I am. My voice trouble is without question my biggest MS challenge at present.

So when I was a teenager I heard the following poem called “Don’t quit”

When things go wrong, as they sometimes will,
When the road you're trudging seems all up hill,
When funds are low and debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest! if you must; but don't you quit.

Life is queer with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you never can tell how close you are,
It may be near when it seems afar;
So stick to the fight when you're hardest hit;
It's when things seem worst that you mustn't quit.

I thought it was awesome so memorized it. I figured it would be handy to recall during the periods of trial and hardship that were surely ahead. Everything was great at the time: health, family, friends, finances. I envisioned difficulty learning a foreign language on my mission, perhaps some homesickness, some discouragement, I figured I would go to college and it would be hard. Long story short, in my mind I kind of envisioned the adversity I would face and I was ready for it. I had a poem!

I have to tell you, some things were not as bad as I thought, like homesickness on my mission. It wasn’t too bad. Other things were a lot worse than I had envisioned, like mission discouragement. But most things pretty well went as I planned. Work and career, hard but rewarding, church callings, same, raising children? A joy beyond description but also extremely taxing.

And then three years ago I started having issues with my central nervous system and was diagnosed with MS. I expected the trial of serious health problems in my 70s or 80s but this wasn’t right. I was only 41! The poem didn’t say anything about neurodegenerative diseases. I tried to get out of it. I mean, I understand the principle of adversity: makes you stronger, necessary part of life, etc. but I didn’t want to actually have to go through it. At least not at 41. Couldn’t we just put this on hold for 40 years? I had things to do, I am still raising my kids and providing for my family. This was a bad time for adversity.

I saw a lot of doctors and specialists, gave myself over 200 shots, have taken over 1,000 pills yet and three years later I am worse, not better. What about help from the Divine? Maybe I just needed to show a little faith. I got priesthood blessings, I prayed earnestly, I know that my family prayed too, and fasted. I will say that the blessing provided inestimable comfort, and I have felt blessed through the fasts, but for some reason, the Lord’s hand has been stayed from granting me a full remission, so far.

But enough about me. What about you? I am certain that everyone here has their share of adversity. How are you dealing with yours? I want you to think about your biggest problem or two. Will they go away? Probably not. Will they get smaller? Maybe, I don’t know, but I will remind you that without them life would be meaningless. But maybe you REALLY don’t like your challenges. I get that. I hate mine but that’s kind of the nature of adversity.

Why doesn’t the Lord just help us out? Does he have the power? Sure, but will he? Is that how he works? The scriptures are filled with stories of people with problems, good and faithful people. For example, the people of Alma suffered under the hand of their enemies. The Lord didn’t just kill off their oppressors, but he did not forget his faithful people either. Listen to what he did:

5 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

It has been said that we will each have our personal Gethsemane. I don’t know about that – I don’t know if it is fair to compare our trials to the great and infinite atonement- and that makes it sound like these is just one. I do believe that everyone will have adversity in many forms. Maybe it is health, maybe financial, maybe a crisis of faith or testimony, maybe romance adversity, maybe the loss of a loved one. I do not believe that life is supposed to be limited to one major chunk of adversity; one defining day but rather a lifetime of challenges, both great and small.

Our challenges are real, but I think it helps to put them in their proper perspective. Imagine sitting at a ward social in the Celestial Kingdom, sharing a big round table with a handcart pioneer and Abinadi. The first person explains how they had to bury their child in a shallow grave along the trail and then Abinadi tells the story of how he had to preach in disguise and was later put to death by fire. Then they look at me and ask,

“So, what is your story? What did you have to overcome?”

What will I say?

“My voice was real weak. Crazy weak. AND then I had to give this fireside! Hey Abinadi, can you pass the water?”

I don’t mean to trivialize our adversities, my adversity. It is hard. But only compared to my life before MS, not compared to the history of mankind. If you ever start feeling that your trials are too much, the scriptures are filled with stories of men and women who had it way worse than you and me.

I have kept a pretty good journal for 30 years. The other day I was reading one from 1999. It's funny what I worried about back then. Sometimes I wish I could crawl through the pages and say, “Dave, don’t fret so much about work, it’ll be fine.”

I recently read The Hiding Place by Corrie Ten Boom. She was a Dutch woman, a devout Christian, in her 40s during World War 2, working in “the underground” to protect (and hide) Jews from the Germans. In early 1944 she was arrested and imprisoned in Holland and later transferred to a horrible German concentration camp. Her father, sister, and nephew all died in prison. As I read the book, I couldn’t help but feel the same desire to crawl through the pages and through time and tell her, “Don’t worry Corrie, the allies are coming. The war is almost over!”

Although she provides graphic detail, I cannot really understand the horror because I know how it ends. I have hindsight now, perspective. I know that the good guys will win the war, fascism will be stamped out, and Corrie Ten Boom will live into her 90s tirelessly preaching of Jesus Christ and the Bible. Hang in there Corrie, the allies are coming! But when she was suffering this adversity, I’m convinced that part of the trial is not knowing. We can’t know.

Think of the prophet Joseph in Liberty jail. I’m sure that he did not anticipate the adversity he suffered there, and with hindsight I don’t think we can fully comprehend his suffering. This was bad: the Saints were being chased from their homes in Far West, some had been killed, friends were turning on him, the physical privations were severe. He felt forsaken. He cried out, “Oh God. Where art Thou?”

If he had known it was just going to be five months, a pretty rough five months, but then he’d be freed, this experience will make for some great sections of the Doctrine and Covenants, he’d move the saints to Illinois, build Nauvoo, and the Church would flourish. If he could have known that, I think it would have been more tolerable. But he didn’t. He couldn’t. That’s the nature of adversity:

you don’t always see it coming,
it can be worse than you expected, and
you can’t know how long it is going to last.

Are you struggling through some adversity that meets those criteria? You didn’t expect it, it is harder than you thought anything would be, and there is no definite end in sight? Who from the future is trying to crawl through your pages and tell you, “It’s OK, just hang on, just a little while longer, the allies are coming, relief is almost there, everything will be fine.”

Listen to what the Lord told Joseph while he was incarcerated in Liberty:

7 My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

8 And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.

9 Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.

So although we don’t get to know the specifics of the future of the resolution of our issues, we are not left without comfort. In the last General Conference, Elder Holland spoke on the atonement, and how the Savior had to suffer alone, and how being without comfort or support from anyone, either on Earth or in heaven, was somehow part of that infinite atoning process. However, he counseled that we do not have to wade through adversity alone. I know that I have not been alone for a moment of my little health challenge. I’m actually kind of embarrassed by the amount of love and support I have received from family and friends.

It is my hope that we can each “endure it well” and learn to appreciate the adversity in our lives and trust that it will be for our good someday.

My Latest Adversity

2009-07-19T19:45:00.001-07:00

A few months ago I was asked to speak at a stake single adult fireside. The topic was Humor and Adversity. Given that my single biggest challenge at present is my failing voice, I thought the request was humorous, but I acquiesced.

This week the lady in charge e-mailed me and said I would have about 40 minutes. Yeah, you might want to have the brownies ready a little early; I’ll be fortunate to go ten. It would be held in the same room as my Sunday school classes, and I’d have the same little microphone, but in class I am pretty liberal assigning parts to be read. Could I do that in this setting? It might be untraditional but I might have to.

I prepared my talk as best as I could and tried not to worry too much about the actual speaking part. However, I did write it out and printed it with a large font and a lot of page breaks so that I could hand off parts of it if necessary. I liked the talk, and felt guided on several occasions while preparing it.

The finished product was about 3,000 words, or about 20 minutes. I was very worried about delivery. This afternoon Kara said, “It’ll be fine; you’re not as hard to hear as you think.” That was kind of her but I don’t think she understands how hard it is for me to say anything; to say nothing of giving a 20-minute discourse. As I’ve mentioned before, it isn’t just the vocal cords; it’s my throat, my soft palate, my whole mouth just stops responding when fatigued.

I was very concerned about the whole ordeal. As I was driving to the church I had the distinct impression not to be so concerned, this wasn’t about me and my vocal challenge. I would have enough voice, and enough composure to get the message to the person that needed it. Just do my best, use others if I needed to, but this was about getting the lesson taught in that setting, not necessarily about the speaker. That was a relief.

So, how did it go? Pretty much as expected. I was strained, but audible. Two members of the Stake Presidency were seated on the front row and I did ask them to come up and read a few things for me, likely earning me a reprieve from future stake speaking assignments. At about 25 minutes my mouth revolted so I skipped the last section and closed. I think I had made my point. I was starting to slur words. You know the “I say these things…” ending? I think I said it with like seven syllables. Maybe six.

I’ll post the talk itself later. I called it "Crawling through Pages." (Keep in mind that I think it reads much better than it sounded!)

Return on Investment

2009-07-16T19:31:00.001-07:00

The other day I noticed that if I play certain tunes loud enough on my PC, Natalie will wander into the study and sing along. She dances too. This gave me an idea. This morning I asked her what was her favorite song. She said, “Here We Go Again” by Demi Lovato. Later I bought the tune and this afternoon I tried out my new lure. It worked like a charm; she was singing and swaying before five measures. It was awesome. Something about her is so addicting. She was so happy I had the song. I think it might possibly be the best dollar I ever spent.

I’m feeling fine, by the way.

Riches Found

2009-07-13T13:12:00.001-07:00

Yesterday I taught again. It was the first lesson from the “Strengthening Families” course. The lesson was on parenting principles and practices. As I was preparing it I fought feelings of inferiority. I am no parenting sage, and my children would readily testify to that. Sure I could review the quotes and scriptures, but what could I add? What do I know? But then I had an epiphany: I could draw on my parents’ wisdom rather than my own experiences! The pauper had just won the lottery! I was wealthy with experiences and anecdotes. After all. that is what The Ensign purchased. Maybe this is why I was given this calling. It all made sense now. Here is a story that I had my friend Nate read in class yesterday:

One Fast Sunday when I was about 12, we came home from church and my mom began preparing dinner, but it wouldn’t be ready for hours. My younger siblings broke their fast on cold cereal, but I knew if I did the same I would be in trouble. I was angry. I hated Fast Sunday. Why did it have to be so hard? What would be the harm in a bowl of Lucky Charms? I’d already fasted breakfast. I hated being one of the older kids. I was lying on the couch, sulking and pouting as much as I dared, when my dad invited me to take a walk with him. “Here it comes” I thought. I was sure I was going to get a lecture about fasting or attitude or accountability or something.

After walking a block in silence, he began explaining the seemingly conflicting laws of justice and mercy, and how the Savior’s atonement satisfied both laws. I struggled to see a connection between this topic and my present pouting. As the lesson continued, I gave up trying to see a link, and just enjoyed receiving a “grown-up” lesson. He never said a word about fasting or food until we got home and he said that if I needed to eat, to go ahead. Perhaps he was demonstrating “mercy” but there was no way I was going to stoop to cereal now. I’d just been discussing serious gospel principles with Dad; I wasn’t a small kid anymore.

See what I mean? I think this is going to be a productive six months. They got it right. At no point did Dad restrict my agency but by treating me with respect, and by treating me like someone he wanted me to be, he made the right choice easy for me.

I did point out that the same approach may not always work on our children. I tried something similar once with Ryan a few years ago and within 30 seconds of my saying it was OK if he ate, he was shoving tortillas in his mouth. Every child is different, but the principles of good parenting are constant.

New Treatment

2009-07-08T20:18:00.001-07:00

OK, this is probably overdue but I guess I wanted to give my new treatment a little time to work before I reported on it. About a month ago I was referred to a chiropractor, who also does acupuncture and general healing/nutrition.

I liked this doctor right off the bat (and once I was convinced he wasn’t going to start sticking me with needles.) It isn’t that I no longer trust conventional medicine, but I have learned that the two neurologists I’ve seen are more trained for diagnosis than treatment. Maybe that is the nature of nervous system maladies; they can identify and classify the problem, but can do little to stop the degeneration, or reverse the damage.

A wise friend once told me that she believes MS is any number of illnesses that happen to share a common diagnostic profile. I totally believe that. After all multiple sclerosis means “multiple lesions,” referring to the scars on the brain or spinal cord visible from high-tech imaging. Who knows how you got it, how precisely it will affect you, or how to fix it, but you have multiple lesions. It would be like if you felt feverish and your doctor said, “Yep, you have ET, elevated temperaturosis” but offered no theory on how you got it, no treatment for it, and could not provide a prognosis other than you will probably uncomfortable. (Then all your friends feel bad for you because you have ET, a disease with a Latin name and initials.)

To make a long story not quite as long, this non-conventional doctor believes that I can be healed. Like me, he believes that although the human body is mortal, it is not designed to attack itself, and that I am too young for my limitations. He believes MS was caused by my body’s reaction to one (or more) of five situations: scar tissue, toxic chemicals like pesticides, build-up of harmful metals, infection, or a food allergy.

He did a lot of tests using vials and acupuncture pressure points and it appears to be door #3: metals, aluminum and mercury, specifically. It makes sense as I have very little scar tissue, I’ve had no serious infections, and I’ve not been able to see any link between foods (like dairy or meat or wheat) and how I am feeling. And I have not dusted too many crops and I wash my fruit.

Anyway, so metals.

Questions:

1. How did that happen?

2. Is it correctable?

3. Can I prevent it from happening again?

4. Can the nerve damage I’ve sustained be reversed?

5. If I get my voice back, will I ever stop singing?

Answers

1. Can’t really know that but likely culprits may be my mouthful of silver fillings or soda from aluminum cans.

2. Maybe

3. Sure, but let’s see if we can undo what’s been done first

4. Maybe, but it may take some time; don’t hold your breath

5. No, not when I am awake, probably not

He gave me some potion that is supposed to help the body purge metals and eight different herbal supplements all aimed at promoting healing. The pills aren’t bad but there are a couple of remedies that are drops that I add to water and it is so awful. It is like drinking bleach, tonic water, and rancid battery acid. OK, that is an exaggeration but seriously, I drink it in front of a sink in case I gag or otherwise reject it. However, it is nothing compared with hope restored, and I’d drink it every hour if it would help. I’d even write a song about it.

Measure of Mercy

2009-06-18T19:57:00.001-07:00

Many times each day I assess my condition. I wish I didn’t as this self-diagnosis is as biased as it is meaningless. The purpose of my life is not to give myself constant feedback on how I’m doing. Does it really matter if one day walking is a little more labored than the day before? Or less? I have learned to not despair during the bad times and I am very aware of and grateful for the better times.

And as I have mentioned here before, the changing of my condition is very subtle and gradual. It is sometimes hard for me to recognize the changes. In a lot of cases, my limitations are not visible to others and really are not measurable. Sometimes I suspect that I have adapted to them rather than they have lessened in severity. Our innate ability to do that, to become accustomed to life’s little difficulties thus minimizing them, I believe, is one of God’s mercies.

That said, I must admit that I have experienced a definite improvement in my vision over the past, say six months? I still do not see detail well as there seem to be little blind spots still, and it wasn’t like I woke up one day and said, “Hey I can see better!” But when I consider how difficult it used to be to read anything from paper, compared to today, I have to admit that it is more than assimilation. I still drive very cautiously but I see better.

Sunday as I was reading the hymn as the congregation sang, I thought back to 2007; I could read the words back then, but it took a moment of fixation and usually the tempo of even the slowest hymns outpaced my reading. The ward organist would e-mail the week’s hymns to me in advance so I could learn the verses better. In 2008 I told him that it was no longer needed, even though it still kind of was. I just felt bad giving him one more thing to worry about when sometimes I wouldn’t take the time to learn the verses, and I couldn’t sing anyway. But now I really don’t need it.

So I don’t know when it happened but the optic neuritis is not as bad as it once was. I am looking forward to the day I can say that about my voice, but am very grateful for this measure of mercy.

Renewed Hope

2009-06-03T21:03:00.001-07:00

Since my symptoms began in ’06, I have seen my regular doctor, three neurologists, three speech therapists, two otolaryngologists, and optometrist, an ophthalmologist, a neuro opthalmologist, a urologist, a chiropractor, a psychiatrist, a therapist, and a nutritionist. I also had a phone consultation with a doctor of alternative medicine.

To date, I have tried over thirty different prescription medications and non-prescription pills/dietary supplements. Most seem to have no effect, and even the ones that help seem to become ineffective over time and have undesirable side effects. I have not kept track of things people have suggested that I have not tried. I just cannot afford to seek out every rumored treatment or cure. However, I kind cannot afford to give up hope. But I have learned to be a little skeptical.

This week I was introduced to another chiropractor/wellness doctor. He also does acupuncture. I met with him for over an hour and he is certain that he will be able to help me. I am still a bit skeptical but the interesting thing is he seems to be addressing the cause of the malady instead of taking it as a given and masking symptoms. He did some strange tests that pin-pointed where my system is stressed. He “diagnosed” mercury and aluminum build-up in the cerebellum, which could have initiated the MS in the first place. Today we met and he gave me seven natural supplements and had me begin keeping a food journal. We meet again in a week.

I know his parents (from church) and he just moved his practice here to be nearer to them. He seems to be both knowledgeable and honest. So does that mean I am going to get better? Of course not but it is refreshing to have someone else besides me wonder what caused this in the first place and how to address it.

Nerve damage is slow to heal so this may take a while but I do have renewed hope this week!

Filler

2009-05-26T21:14:00.001-07:00

So Erika had a school assignment to compose some poetry. One of them was autobiographical. I did not like much of the tenor of the poem, but especially took exception to these lines:

My parents named me Erika.

Not planned or picked out special,

Really.

After I read it I had to disagree. Because talking is kind of a pain right now, I thought I’d better write it down. I guess it is somewhat personal but this entire blog is kind of personal so what’s the harm? Here is the short letter I wrote to her:

OK Erika, here’s the thing – I know that your teacher doesn’t care about this, and the poem is fine for the assignment, but I just have to say something. The part that I read makes it sound like you were just some kid that happened to be born to us. Like it was no big deal, just another kid. “What shall we name her?” “I dunno; it doesn’t matter. It’s a girl? How about, I don’t know, Erica? But with a K just because, I don’t know, what the heck?” “Yeah, and to be cute we’ll have her middle name be ‘Kay.’ No meaning there, just another name. Besides, she’s just some middle child; she’ll get lost in the shuffle.”

I don’t think you realize what a monumental event your birth was to us. Not just because of the health scare either. From the day was found out we were expecting, to the thrill of learning it was a girl, to your birth, through your illness, and to your homecoming and next 13 years, it has been a joy beyond description. I like to think of myself as a writer and I can’t even find the words. Sure, we already had two kids, but still, your soft brown eyes and pleasant disposition were so heart-wrenchingly precious. It doesn’t matter that you are not the oldest, or the youngest. You will always hold a very special and very large part of our hearts.

Then tonight we we’re having ice cream pie and I let Natalie choose her slice first. Erika protested this and asked why. With a wink I said, “Because she is our favorite.” Erika smiled, knowing I was teasing. Natalie smiled too, hoping I wasn’t. I continued, “You see, we have a first-born, a baby and a boy.” Ryan then chimed in, “Yeah Erika, you’re just filler.”

It was hilarious, mainly because the idea is so preposterous. My little Eebie is one of my favorites; she knows that.

Reminiscing

2009-05-23T09:00:00.001-07:00

Kara and I were recently looking at photo albums and reflected again on how time just slips by so seamlessly. It’s funny, we cannot “time travel” forward or back, and while the future is hard to imagine, the past is so tangible it is hard to forget. Ryan’s high-pitched voice and endearing lisp and Natalie’s little Buddha-belly are so fresh in my memory; it’s hard to admit that those days are gone.

I really enjoyed my days as a father to young children; no regrets. However, with the perspective of being a father of teens, there are a few things that I might have done differently. For example, I would have taken the time to really teach them that the phrase “Work before Play” is not just a handy family saying for small kids on a Saturday morning, but a principle for living. It is applicable to yard work, cleanliness, homework, scouting, and should be self-enforced.

I would have wrestled more with my son and given more “horsey rides” to my girls. I did these things, often, but I think I would have done more.

I would have planted more, harvested more, gone on a few more donut runs and been more creative with Play-Doh.

I would have spent less time on rules, more time on principles. Less time defining the “line” between acceptable and unacceptable behavior; more time inspiring greatness through purity, modesty, and virtue. This would make “the line” irrelevant. (I don’t know how, but I would try.)

I would have spent more time caressing their little heads and showing affection. I doted on them when they were small, a lot, and the innate desire to show them affection has not waned, but they resist it now. I didn’t need photo albums to remind me that I miss that.

Outing

2009-05-17T20:26:00.001-07:00

Friday night was the Fathers and Sons camp out. Ryan has not shown much interest in going the last few years, but I figured the he wanted to go, I would go notwithstanding my limitations. Why couldn’t I sleep in a tent? I have a lot of strange problems, but I have no prohibition against eating breakfast burritos.

It was for the whole stake and Ryan was cast in a skit by his leaders so he wanted to go, but for the evening only. It was only about thirty minutes away so I was game.

Unfortunately, we had to park some distance from where our ward was congregated, maybe 100 yards. Once we reached them Ryan found a friend and disappeared. It was then that I realized I’d left the folding chairs in car. Not only did I not want to trek back there, Ryan had the keys. I stood visiting for about 30 minutes, which is longer than I thought I could. Finally I asked a friend to call Ryan and have him return. He did and before long I had the chairs. It wasn’t an emergency because I could have just sat on the ground. It might have been a little weird with seven men all standing but hey, you gotta do what you gotta do.

The next challenge was the restroom. It was in a building down the road, about 300 yards in the opposite direction. When I had gone about half way I thought maybe walking that far wasn’t a good idea but what choice did I have? It is impossible to describe, but I'll try. Each step is no big deal but as I walk, my body temperature slowly rises and the nerve signals to my legs and feet are diminish. It takes a lot of concentration.

I made it, and back, which kind of surprised me. I would not have guessed I could walk that far, unaided, over uneven ground no less. I should have remembered to bring my walking stick! By the time I got back I was rather unsteady. I did my best to be inconspicuous and eventually found my chair.

I rested for a few minutes; my feet were very hot, with socks and shoes on, and I was generally warm. I guess I’m just not cut out for much in the great outdoors anymore.

The sun was setting and the program would be starting soon. Unfortunately, it was back near the restroom. I couldn’t. Fortunately Ryan was nearby so I had him help me back to the car, where I waited for him to do his skit (barefoot with the a/c blasting.)

So, it was clearly the worst F&S experience I’d had, but what did I expect? We were not staying the night and I have real limitations and I cannot ignore them or be unprepared.

It did bring back many fond memories of past outings. I only hope that my son remembers the good ones more than the one where he had to help his dad back to the car.

Silver lining? There are lots. I have a son, we have many "good ones" to remember, and although I was unsteady, miserably warm, and uncomfortable for a spell, I didn't fall, injure myself, or create a spectacle. Life is good. (Also, I was soundly sleeping in my bed when at 2:00 a.m. there was a terrible thunderstorm that basically washed out the camp; I didn't have to deal with that!)

Impromptu Assignment

2009-04-26T13:17:00.001-07:00

So today was our stake conference for us to get a new stake president. As I walked in, the stake clerk greeted me and asked how I was doing. Before I could give my customary “fine” he added “vocally.” I answered honestly.

“Poorly” I said just above a whisper. I leaned close to him and said that I felt fine but that my voice just isn’t working right. He then said, “I was going to ask you to give the invocation. Can you do that?”

I told him that I was willing to do it, but that I was concerned that I would be hard to hear. A counselor in the presidency (my former bishop) joined us at this point. He already knew what we were discussing. He said that if I felt OK, he would like me to do it; just speak right into the microphone.

I agreed to it. How hard could it be? It is just a prayer. I have no fear of public speaking. I do have a little fear of drawing attention to the “prayer giver” and therefore away from the prayer, but it is smaller than my fear of “chickening out” of any request from leaders that I sustained.

I tell people all the time that I am doing better than I sound, and that is true. My vocal limitations are my most severe symptom, and perhaps misleading. But I haven’t had a chance to tell everyone, and I’ve lived in this area a long time. Would this prayer unnecessarily alarm them? Probably. Oh well. Sorry.

As the meeting began, I was reminded that this conference was being web cast to two other buildings. Great; even more people to confuse or alarm. Including the outgoing president, there were three general authorities there.

I couldn’t help thinking, “Is there not anyone else better suited to do this? Is not everyone better suited to do this?” The answer was “Of course, but that is not relevant.”

I also couldn’t help but wonder if the Lord could not just grant me a tiny two-minute remission; not for my sake but for the meeting's. Again the answer was “Of course, but you need to work through this, not around it.” If praying in public somehow stayed this insidious disease, I’d volunteer for every prayer. No, it doesn’t work that way. The degree to which I want to use my voice for noble or virtuous means does not justify symptom reversal. “Whole” cannot be a consequence of “Good.” (If that were true, President Young would have told us given us that counsel in the last General Conference.)

The prayer was short and strained, but otherwise uneventful. I am grateful for that. (Can you imagine how long this post would be had something interesting happened?)

I noted with some irony that our outgoing Stake President said that when he was called to be an Area Authority, in a moment of introspection he thought, “Aren’t others more righteous, more knowledgeable, or are better suited for this calling?” His answer was “Yes” also.

I know it is unfair to draw a parallel between saying a prayer in public and serving as an Area Authority but I'm just saying that there was a common denominator.

When we were asked to raise our right hand as a vote of gratitude for service rendered by the outgoing presidency, I did, but noticed that my hand seemed heavy, as if somehow my vote of thanks was somehow facilitating their release. They are great men. The good news is the two of them were put in the new presidency. The slightly troubling news was that my current bishop was the third member of the new presidency. This time the sustaining hand was definitely heavy, and it wasn’t the MS or any reservations I had about the caliber of men being sustained. It was just that I was losing a good bishop.

Memory

2009-04-19T07:21:00.001-07:00

My 8^th grade US History teacher explained something fantastic to us. He said that during the semester, each person in the class would learn to name every US President in order, AND know the year each took office. At that time there had been 39 Presidents. The class groaned.

I didn’t really mind because I had always pretty good about remembering useless trivia, but he continued, He said that it would be easy, he knew a few memorization tricks, and that without question, every student would get it down. It seemed kind of unbelievable. There were some real goofballs (and dimwits) in the class. Just then a an office aide entered the room with a note. She had taken this class the year before. To prove his point he said, Tracey, can you tell the class who was President after Martin Van Buren?” She didn’t blink and said, “Harrison.” He asked, “And what year did he take office?” She said, “Van Buren? 1833.”

That was incredible to me. How had he done this? Without going into detail, I will say that he made good on his promise. The mind is a curious thing. Over the past 30 years, I have taken on several memorization projects; more one a dare or a whim than for any practical purposes.

For example, during the Pokemon craze of 2000? 2001? My son and I decided to learn them all. 150 characters. In numerical order. It was fun. It seemed impractical and perhaps impossible, but the mind is a curious thing. We have since forgotten the sequence, but yesterday he brought up the memory of learning them together. Good times. Then he rattled of the first three, but then paused. #4 Charmander popped into my mind.

I’m not bragging. I remembered the fourth Pokemon! I am just marveling over how the mind can work, either with intentional or unintentional memorizations. After spending a year in Argentina I found that I had unwittingly linked many hymn titles to their corresponding hymn numbers. I never set out to do this, but after using the Spanish hymnal for a year, it was just there.

At various times I have committed to memory important things like passages of scripture, inspirational verse, and even The Proclamation to the World. My mind easily recalls many birthdays; I don’t even try. I recall less important things too, like Pokemon, US Presidential history, and certain baseball card numbers.

Having a “neurological disorder” that can affect cognizance and memory has spooked me, but so far I think my mind has been unaffected. In fact, just to stay sharp (and to give me something to do when I’m too tired to do anything but think) I have embarked on my largest memorization challenge to date: All 660 baseball cards from the 1973 set, of course. I got the idea last month when my brother-in-law was here and was looking through some old cards. Seeing one obscure, all but forgotten player he said, “Clyde Mashore.” The number #401 popped into my head. He tried another, but I didn’t know it. So I don’t really know what is up there. Having spent considerable time lately selling these cards individually has provided a “head start” but still, 660? Is it even possible to retain a list that long? That is like the US Presidents, but 17 times over. I don’t know if it is possible, but I'm going to find out. I’m almost half way there.

I know; it is useless, other than as a diversion and to push the bounds of the mind. And, in the off-chance that you find yourself needing to know a 1973 card number, I’m your man!

Voracious

2009-04-14T06:44:00.001-07:00

So far so good through this steroid conversion. It is nothing like the first time and actually I’m feeling pretty good. I do get really tired in the afternoons and early evenings, but it is nothing that a little rest can’t fix. My walking and mobility are definitely improved. I sometimes forget how tough the first few steps had been for a while. Now they’re not. Maybe I was in denial. I don’t know.

In any case I’m grateful for this remission, and for any contribution to it, prescription or otherwise. I am developing a taste for flax oil.

Another encouraging thing I’ve noticed is the return of my appetite. Over the last few years I’ve been hungry but not that often. Eating was more of a chore that I had to do to maintain energy. And I shed 50 pounds in the process. I started noticing this weekend that I was looking forward to meal time and that everything sounded so good! A can of tuna, a hard-boiled egg, everything. Yesterday it intensified and I ate a lot. I think it is a good sign. Not only am I really enjoying everything from pretzel sticks to flax-oil and peach yogurt, but if this trend continues maybe Kara will stop pestering me to buy new clothes.

Chubby Dave is on the mend!

Smooth Sailing

2009-04-12T15:27:00.001-07:00

OK, I’m on the “done side” of another lesson. It wasn’t great but it was fine. The material is so powerful.

Happily I don’t have any tales to tell. It was just an uneventful lesson. It was good enough, which is great. My voice held out well enough.

Hopefully the lesson I learned was to prepare, but not to stress out. I did fairly well this week just trying not to worry. There were a million things that could have gone wrong. None did. Coming off steroids? Yeah, I felt fine. What about…anything? You know, I can get pretty creative (and dramatic) dreaming up possible trouble.

I need to remind myself that it is just a lesson, not an event, and show more faith by not internalizing worry.

Mini Update

2009-04-11T10:28:00.001-07:00

OK, five days of the intravenous steroids and it seemed to make a world of difference. I mean, my health still isn’t ideal, and my voice is as stained as ever, but I had so much more energy and even my walking is noticeably improved. I’m not like speedy Gonzalez or energy-man or anything but going from say, 20% of normal to 60% or 70% is indescribably. I was glad to have my arm back and not have to worry about the catheter. And there are side effects to such a powerful treatment, like even more difficulty sleeping, but I have enjoyed this respite and the conversion from IV to oral today seems to be going well. I am getting so much done! I have to be careful though; my mind routinely overestimates my physical capacity.

Tomorrow is the big test. Day 2 off the steroids and teaching. Here’s looking forward to it!

Treatment Update

2009-04-06T21:20:00.001-07:00

I had my quarterly visit with the neurologist last week. She wants to try another round of steroids which I began today. They are delivered via intravenous infusion, at home. It is self-administered and I am doing one a day for five days. It takes about an hour and a half. A home health placed the catheter this morning, and it stay in the entire time. That is kind of a pain but it is good that you only get pricked once (or twice if the first one doesn’t really work). I did have a good day today with much less fatigue. Let’s hope that marks the start of a good streak. So, if I look all buff and ripped next time you see me, it’s the steroids.

I am mildly concerned about this coming Sunday. The first time I had this treatment, the 2^nd day after completing the steroids was absolutely terrible. I think there were exacerbating circumstances then, and my neurologist this time has prescribed a pretty potent 2^nd steroid (oral) to taper the drop-off over ten days. I’m concerned because this coming Sunday it is my turn to teach again. I guess the Silver Lining is that the topic is “overcoming anger” so I should be able to teach it even if I have some ‘roid rage!

Also, I'm getting another MRI, probably next week.

My Conference

2009-04-04T16:22:00.001-07:00

I was looking forward to conference today. I think I always do, but maybe more acutely this time as these past few weeks have been tough. It is mostly just the overwhelming fatigue I feel for so much of the day, but also my walking and leg strength seem to be worsening. And my voice, if you can believe it. More challenging than the physical limitations is the somewhat self-inflicted mental and emotional toll. I know I’m doing it, but I seem unable to stop thought patterns that are self-defeating and absent faith.

I was hopeful that I would hear counsel specifically applicable to my circumstances, and now after listening to conference, feel the need to apologize to anyone else that listened to four hours that were aimed directly at me.

Seriously. How many talks were on, or referenced, adversity? Six? Eight? Suffice it to say I have some repenting to do. No, not the self-righteous kind, and I expect that readers of this blog give me way too much credit as if the peculiarity of the challenge itself somehow translates into virtue. It doesn’t. But I write some good stuff, and I listened to conference, doesn’t that prove my head is on straight and my moral compass is calibrated? First, I don’t write everything I feel and fear, and second, it doesn’t prove anything.

I get so frustrated when I consider my challenge with a narrow perspective. Look, I am not trying to be an inspirational anecdote. I want my old life back! I wasn’t done being young. Like one speaker said, I do feel sometimes that it is unfair. As if! As if there is such a thing and as if the sum total of my burdens outweigh the sum total of my blessings. (They do not.) But just like my kids say, “That’s not fair!” when they really mean “That isn’t my will,” the real me knows that my life will never approach “fair.” I’ve been far too blessed.

Oh, how I need to remember the “big picture” and have more faith. (I realize that recognizing this need and blogging about it do not alone remedy it!)

Taking the Flax

2009-03-25T14:42:00.001-07:00

A friend (who knows a lot about MS and about nutrition) recently suggested that I begin taking flax oil. She warned that the taste is pretty strong so I might want to mix it with yogurt or something. I started this yesterday and while it is too early to report on results, I can say, wow, she wasn’t kidding about the taste. It overpowers everything. It makes any flavor yogurt Flax Oil flavored. (If you ever see that flavor, I don’t recommend it.)

It is nasty too. I mean, it might actually help lima beans but it ruins everything else. I tried mixing it with Ovaltine but this just in: oil doesn’t mix well with milk. I had a layer of oil suspended above the chocolaty goodness. It was like the Exxon Valdeez had passed through. A silver lining is that it tastes better than crude oil. (I think.)

Tonight I am going to try it with a blend of banana, ice cream, and battery acid.

Writer's Block

2009-03-21T23:25:00.001-07:00

So, I don’t know what to write here. It isn’t that I don’t have any thoughts on this ordeal; quite the contrary, actually. I think about it all the time. The whole premise of “The Silver Lining” is optimism with maybe a touch of inspiration.

This past week I may have been having an exacerbation. I’m not really sure, and there is no memo announcing it. I’m not always the most objective person when it comes to my health, but Kara has noticed a precipitous increase in fatigue and I have noticed that at some times of the day, any exertion tires me really quickly. More troubling is the “nervy” feeling I have, especially after resting in bed for a spell.

It seems that my voice has gone from “worse than I thought possible” to “way worse than I thought possible.” Walking is more unsteady at times.

So what may have triggered this? Who knows? I did have a little cold, maybe that’s it. I have not been under inordinate stress. I can’t help but consider maybe it is triggered by an allergic reaction. You know, my first problems happened this week in 2006. Maybe there’s something in the air.

So back to the problem at hand. What do I write about? Silver Linings are tough to come by during the bad stretches and tend to sound dramatic if not sarcastic, like I’m thankful for the sun and that it didn’t explode today. What is inspiring about me chronicling the struggle I had making a tuna sandwich? But I came off conqueror! It was good. No, it’s not that bad. If you watched me make a tuna sandwich about the only thing you might notice was that I am a bit slow and deliberate. The problem is the twenty minutes I’m resting on the couch gearing up to make lunch, the careful way I chew and swallow, and then rest from the exertion.

I guess one great thing is that this latest episode has corresponded nicely with the NCAA Men’s Basketball Tournament. I’ve listened to a lot of basketball this week. It is a good diversion. Maybe in a few days I’ll tell you about Wednesday afternoon when I got a call to give a blessing. It was clearly the worst day this past week and pretty much at the worst hour. But it was for a long-time friend that called me despite my limitations and challenges of which he is familiar.

I need to find a way to tell the story without breaking confidences, painting an exaggerated struggle to do the service, or make me sound like I was leading the Crusades.

You know, I might not write that story.

Broader audience

2009-03-10T15:35:00.001-07:00

People often say kind things about my writing and my teaching. I’m sure that this is due, at least in part, to the fact that I am surrounded by kind people. I do not doubt that it is honest feedback, but sometimes I question its bias; especially given my “unique” health predicament. I mean, really, no one is going to say, “Dave, your writing is self-aggrandizing and linguistically sloppy” or “Dave, appreciate the teaching effort but we can’t really hear you.”

Last summer I posted a story on this blog that had nothing to do with my health condition except that it was a delayed response to a question from my sister. (I was with her at the time but I knew I could not answer orally.) It wasn’t my voice so much as I realized then that I would emotionally “capsize” on many levels. It was a memory of a confrontation I had as a teen with my father and I called it 1,000 Sermons.

The written story came out well, accurately capturing a moment of pure parental humility. My brother Dan commented, “Ensign article” which was high praise indeed. The Ensign is HUGE and Dan doesn’t say a lot, but he is rarely wrong. I can’t think of a single instance In the 29+ years that I have known him. So I figured, “Why not?” I cleaned it up a bit and submitted it via E-mail last December.

Today I got the rejection E-mail. Sadly, I am quite familiar with them. I will say that it was the nicest one I’ve received. But wait? Dan said “Ensign article” and he is always right. Are you sure? Then a few minutes later I got another E-mail, this time from a secretary at the publication. In it she apologized for sending me the wrong E-mail; they DID want to publish 1,000 Sermons.

Utter shock. I mean, I should have known that he’d be right again but still. Really? I’m still kind of in disbelief. At this time I don’t know much more than that: they want to publish it and I will be hearing from them. Will it really happen? Will it be in The Ensign or another publication? When? Will it be heavily edited? I don't know but I do know that I am extraordinarily humbled at the prospect of playing a part in sharing a morsel of my father’s wisdom with a broader audience.

At the risk of sounding like I won an award or something, I want to thank Sara for the invitation to share, Rachel for the blog creation idea, Dan, for the prediction, and everyone for your constant encouragement. Mostly thanks to Dad without whose example, there would be no story.

p.s. When I told Kara she was congratulatory but underscoring my sometimes capricious self-confidence she said, “You knew you could do it, well, kind of.”

Teaching (and learning)

2009-03-08T19:03:00.001-07:00

I taught again today. I considered beginning the class with something like, “Welcome to another episode of The Hoarse Whisperer” but I thought better of it. I can’t afford to use up my voice on jokes, as tempting as it is. Besides, I try hard to downplay my limitations, in deference to the lesson material. (Also, play-on-words jokes don’t go over so well when, well, you struggle to talk. People are expecting something more valuable or meaningful than self-deprecating humor.)

I feel that it went better this time than last. I admit that I expended an inordinate amount of worry this past month. Kara feels that the worry makes all my symptoms worse. There may be a correlation between anxiety and symptoms, I’m not sure, but there is definitely a link going the opposite direction. (i.e., When I feel a wave of fatigue or it gets really hard to talk I worry about how I can teach.) Kara says, “Why are you worried? I can hear you fine.” I appreciate the encouragement but when she says this, it’s one-on-one, she is five feet away, and I have said maybe 20 words.

But today it was fine. I mean, I’m not the next American Idol or anything, and it was very hard, but I had a little clip-on mike and I made it through. I was audible enough. (Simon would have grilled me but Paula would have had kind words.)

I realized this week that I will never get a memo saying, “Yeah, about Sunday, you’re not going to be able to do it.” All I can do is prepare to teach, replacing thoughts of fear with thoughts of faith, and just do my best.

Besides, it’s just a class. And it’s not like it’s a tough crowd; they are all my friends and will do whatever they can to make the class a success.

Name Them One by One

2009-03-01T14:51:00.001-08:00

I miss singing. My voice trouble just doesn't allow it. I have learned that even though I cannot sing, the desire to sing has not yet been muted. It is frustrating. Every once in a while I try anyway and the result is pitiful. I especially miss singing the good hymns at church.

Today we had a “broadcast” Stake Conference. The intermediary hymn was “Praise to the Man.” I love that one. I tried to hum along softly but even that got too hard. I then just mouthed the words but when we got into the later verses, I wasn’t so sure of the lyrics. Oh wait, they have the words on the big screen, right? News flash: you don’t see that well either. I started feeling sad; I just wanted to sing!! Is this not the weirdest “challenge” you’ve ever heard? I have no precedent. I never even considered that the nerves controlling vocal cord tautness could malfunction resulting in loss of tone and strength. I just always figured that I’d be able to do something as easy as sing.

Fortunately I didn’t let the self-pity train leave the station. I know that it doesn’t help anything or anyone to focus on the limitations. OK, can’t sing and eyesight isn’t great. What do I want? A medal? A violin solo?

I needed to shift my focus at once. Sure, there’s a black cloud, a weird black cloud, but what is the silver lining? I then considered that my hearing is fine and I could enjoy listening to the hymn. Not everyone has that blessing. Further, I was standing next to my son and I could hear him singing beautifully. There are a lot of blessings in that sentence. I can stand. I have a son. My son can stand. He is next to me. He can sing. He can sing well. He is singing. My son is singing a hymn with the congregation. He is singing very well.

I was up to ten and I’d scarcely started. Counting your blessings really works.

Just to clarify...

2009-02-20T14:39:00.001-08:00

As a follow-up to my last post on prayer and personal revelation, I thought I should clarify a couple things. First, I don’t believe that prayers aren’t answered; I was only making the point that sometimes I have been guilty of asking for an answer that either was an attempt to forfeit agency or for which the Lord has been very clear on the principle through scriptures, inspired ecclesiastical leaders, or through other means. For example, I entered the mission field with a hundred prayers on my lips, but whether or not I should serve was never a question.

Referring to a hypothetical architectural decision Elder Packer said, “Maybe the Lord just doesn’t care.” I don’t think he meant that the Father is uncaring, even over the minutiae of our lives. I think he was pointing out that many of life’s decisions are not relevant to our moral bearing and standing before God.

I do not believe that we are relegated to a life groping in the dark for spiritual direction. I believe that the heavens are open. I believe in inspiration. I believe that we should be sensitive to, and pay heed to the promptings of the Spirit. We may never know “why” we are prompted to do something, and that’s OK, but we should heed anyway. I was just opining that if you are struggling with a decision, and the heavens seem to be silent, first consider whether it is a right vs. wrong choice. If so, see what has already been taught to us. If it is not a moral issue, consider that perhaps there isn’t a “right” or even a “best” answer. That’s all I was saying.

Prayer Pondering

2009-02-19T06:10:00.001-08:00

Our Sunday school lesson this week dealt with prayer and personal revelation. I believe in the power of prayer and the reality of prayers being answered. But I have found that a crucial step in getting answers to prayer is first asking the right question. A friend of mine made this exact point, referring to something Elder Packer once said:

"We often find … people who will pray with great exertion over matters that they are free to decide for themselves. Suppose, if you will, that a couple had money available to build a house. Suppose they had prayed endlessly over whether they should build an Early American style, a ranch style, modern-style architecture, or perhaps a Mediterranean style. Has it ever occurred to you that perhaps the Lord just plain doesn’t care? Let them build what they want to build. It’s their choice. In many things we can do just what we want.”

Yes! I have been guilty of that. Even with “big” decisions, like proposing to Kara or making an offer on a home, I mistakenly believe that if I phrase the prayer so that it is a yes/no question, I’m more likely to get an answer.

The Lord has given us both intelligence and agency; He’s not going to make our decisions for us. When I pled to know if Kara and I would be happily married, he couldn’t answer. That would be up to us. What if he’d whispered, “Yes, everything will be fine.” Might we not have felt the need to work at our marriage so diligently? I also don’t believe He gives out insurance plans, like “Will everything be OK if we take this job and move to Kansas?” Wrong question.

Sometimes I hear statements like “We know that we are supposed to be here.” Maybe you are but what does that mean? I’d be real careful in this area; it sounds like pre-destination, a concept that I don’t accept. What does “supposed to” mean in this sense? A place where obstacles to happiness will be minimized? Or maximized to result in spiritual growth? Or somewhere in between to provide a challenging but rewarding life? Is it an area where your unique talents can be used to serve others effectively? Let me submit that this can occur just about anywhere.

I’m not trying to question people’s sense of personal alignment with what they feel is a master plan for their life. I have just found in that reviewing my life, every prayer where I attempted to defer agency (and therefore accountability) has remained unanswered. I think I understand now. Asking why I got MS or even if it is a challenge I’m “supposed to have” is folly. What I should be praying for is increased measures of patience, perspective, and peace. (And you don’t need a chronic illness to start asking for that!)

Health Update

2009-02-15T17:15:00.001-08:00

I am afraid that The Silver Lining is turning into a weekly, not daily blog. I’m sorry to any of you that look for updates more often. Truth is, nothing seems to change too quickly, and it is hard to accurately measure anyway. I consider gradual worsening to be temporary, maybe there is an element of denial. But I do recognize improvements. For example, my vision continues to be compromised, but it doesn’t seem as bad as before. Driving is not as hard. Maybe this is due to my becoming accustomed to the impairment, but I don’t think it is all assimilation. Maybe this optic neuritis really is episodic as I was told. It has just been a long episode and I would not be interested in a re-run!

I do not plan to provide a symptom-by-symptom run down. Suffice it to say that everything is about the same, and I consider status quo to be a blessing. Time allows me to learn limits and assimilate challenges, making them seem small. Well, smaller and definitely manageable.

Pop Quiz

2009-02-09T20:50:00.001-08:00

I attended an Eagle Court Sunday evening. Remarkable young man; I was honored to be there. They did something I’ve never seen before. When filling the “eagle’s nest,” they asked us each to come to the microphone and state our name and the year we attained the eagle rank. He said it was a pop quiz.

Uh oh.

No, I didn’t have a problem remembering the year. I know the exact date. December 22, 1979. (I was 5,353 days old.) I even know the date of my board of review: October 26^th. It was my half birthday and my mom’s due date, but the baby didn’t come for two more weeks.

I think I was good with the quiz. I was walking well enough not to create a spectacle, but that thought did cross my mind. The father of the eagle went first. He is a year older than me but he was 1982. I then realized the only drawback I’ve ever felt for earning my rank at a relatively young age. I was going to sound older than I am! But no time to worry about that, it was my turn. I barely croaked out my name and year and then was glad to find a seat in the nest. Who would have ever imagined that such a simple little thing could be such a challenge! It is just weird. Talking? Most people do it without a thought. I even did for four decades.

A few minutes later a friend of mine said his name, 1988, and then added, “and I can’t believe Dave Hixon is so old!”

I was so glad he said that! Not only did it mean that I was intelligible but that he realizes that even though I walk like I’m 80 and sound like "near death," I am neither and I can still take some ribbing. I had to smile.

Eagle Eye

2009-02-02T16:55:00.001-08:00

Last July I was asked to be an auditor for my newly formed stake. It really was a question. The asker was a good friend and was sensitive to my health condition. I had no concerns about the understanding the audit process. I oversaw dozens of audits professionally, I’ve taken a college course in auditing, and when I was ward financial clerk, I survived several stake audits. So could I do it? Well, it doesn’t require speed or distance walking and I could probably schedule around the fatigue (or medicate.) There isn’t a whole lot of talking involved, so it was down to the vision. Could I see well enough to do it? You have to be able to see small numbers printed on paper.

Brimming with faith, I told him I didn’t know. I was willing to try, and if I couldn’t do it (or could not do it well enough) I would let him know. I was assigned three wards; surely I could do three measly audits.

I found the actual audits to be challenging. Seeing the numbers was difficult, but I could do it. It just took a little extra time and effort. Conducting the interviews with the bishops was hard. Talking can be so difficult at times. When I finished the last one I decided that I was done auditing. I was just so tired and it was so hard on me. For pity’s sake, surely there were 50 men out there that could do audits as well as I and for whom it would require far less effort. Honestly! Maybe a lot more than 50. 100? 200?

However, the audits are done only twice a year so I decided to wait and see. I’m glad I did, not because my vision, voice or stamina have improved but because I have realized that “the question” is not whether someone else could do the audits with less difficulty but whether or not I could do them. Period.

If “work” always went to the most able, I would never do anything (except maybe write.) I can’t live my life like that. Performing audits is hard, harder than it should be; I’ll give that to you, but so is making the bed and taking out the trash. These little tasks aren’t that hard, but I still do them, and it makes me happy to contribute. Sure, for others it would be way easier, but there is a positive correlation between work and happiness. I’m glad that Kara lets me do little stuff around here and I’m glad that my church leaders are not afraid to err on the side of giving me too much.

Yesterday I did the year-end audits for two units. Different from last time, I did them in the morning which helps. I could see the numbers with less difficulty and I wasn’t tired. One clerk mentioned to his bishop that I have “an eagle eye” as I happened to spot (and inquire after) all their “irregularities.” If he only knew. (But let's keep that between us.)

Retraction

2009-02-02T13:50:00.001-08:00

To anyone who read a post called “Speech Impediment” late last night or early this morning, I’m sorry. I mean, it was an accurate description of my day, but with a few hours hindsight, a good night’s sleep, and a re-read, it sounded awfully “whiny” so I un-posted it. I think it was exactly what I feared this blog might become before I started it. Nothing good, positive, or encouraging can come from my whining. Suffice it to say that I taught my second lesson yesterday and I have got to find a way to teach with less dependence on speech!

A Silver Lining

2009-01-26T07:24:00.001-08:00

Amanda’s boyfriend Sean was baptized last night and he asked me to perform the ordinance. He was a little hesitant in asking me because, well, he has been around me lately, but I assured him that I could do it. In fact, I would be honored. My legs could handle it, right? Sean is about my height and is an agile wrestler-type 17 year-old. And we’d be in water. I agreed to it and we proceeded.

All week I was concerned though, not about my legs but my voice. Could I be heard? I’ve baptized dozens of people but never was I as nervous. I mentally rehearsed the prayer over and over again. Surely I could do this, it was only 28 words! Just 40 syllables! If I could just muster up the voice for 40 measly, but important syllables! I considered recusing myself mainly because I didn’t want to do anything to detract from the sacredness of the ordinance, or the focus on Sean on his special day. It was not about me and my willingness to tempt fate. Seriously, I had thoughts like this. Tempt fate to do what? It was a baptism, not a triathlon! I don’t know why I was so nervous.

We entered the font, took the customary positions and I began. I cannot report a miraculous healing here or even a temporary stay; the voice was weak and strained as usual, and evenings are worse than mornings, but it was audible. When I reached “Amen” I was so relieved. I had done it! Then I had about one second to consider the physical part, which was accomplished with ease. Here is the thing: I was so concerned about the voice thing that I didn’t take any time to worry about the immersion part, which worry would have been in vain anyway. That’s a Silver Lining, right?

Is it me?

2009-01-16T13:26:00.001-08:00

I suppose it is natural to wonder if my malady is the result of choices that I made. Notwithstanding there are no known causes for MS, I can’t help but wonder if it was something I ate. Or didn’t eat. Do lima beans and walnuts somehow interact to form a myelin shield? I know, it’s silly but I find myself doing this a lot. I consider that most people don’t have MS and can talk well into their 40s. What did I do that was different from most that could have done this?

I habitually read road sign in reverse, you know, Regnirre, T-srif, and Aredam from my home town or even just “Tixe Txen” anywhere. Could that have done it? Maybe somehow the cerebral calisthenics were too much. When alone in elevators I used to take a couple practice swings with my air Easton – I don’t think a lot of people do that. I always lather and rinse, but I never repeat. That can’t be it. Does anyone repeat? Maybe it is thinking ridiculous things too often! I do that.

Betty

2009-01-07T18:55:00.001-08:00

Over the past few years, I have been guilty of “assuming the worst” when it comes to my health. To be clear, I do not wish to die just yet, and do not feel that I am on death’s threshold now, but I guess in the face of such persistent health limitations, and at 70% of my pre-MS weight, if it were to happen now I could scarcely say it took me by surprise, but that doesn’t mean I’m dying. I mean, we all are some day, but I do not have a terminal diagnosis or any premonition that my day is at hand. In fact, if anything I feel that I still have time. I am uncomfortable (and humbled) when I sense that others are treating me as if I am precariously straddling the line between life and death and bidding me farewell, just in case. I know I look bad and sound even worse. Actually, I understand and don’t fault anyone. But let me share a quick story.

In 1984 I met my mission president and his wife. They were in their 50s and the wife (Betty) seemed to be in ill health. I think she had suffered from a minor stroke and this impacted her speech and coherence, especially when she spoke in Spanish. She was thin and frail. She was very kind.

Once I was visiting with her and mentioned that I had learned my mother was expecting. Her eyes lit up at this happy news and asked that I keep her updated. But there were a lot of missionaries and she often struggled to remember our names, even though most of us went by the same first name. I had no doubt that she really cared, but I didn’t expect that she would necessarily remember this conversation. But she did. She may not have been able to recall my surname, but she would always link my face with “mother expecting.” She was thrilled to learn of the baby’s birth in 1985 and often asked how the baby was doing.

Shortly after I began serving in the offices in 1985, she was hospitalized with a dangerous blood clot. I didn’t spend a lot of time pondering her health, but in hindsight I think I figured her days were few. I mean, she was obviously limited by her previous health challenges and although she wasn’t that old, she seemed old enough, and frail enough, that it wouldn’t surprise me if she slipped into her next estate sooner rather than later.

What did surprise me was 20 years later she was exactly the same! I attended a reunion in 2005 and she was there, looking almost unchanged from those days in Buenos Aires. She and her husband completed their three years presiding, and then served missions in Mexico and Germany. She could not recall my name, but she did ask about the baby. (He was in Taiwan on his own mission!)

My point is that we don’t know. All we can do is live one day at a time. We may not get a warning, and we may interpret things as warnings that really aren’t. I think that death usually comes without premonition, whether or not we blog about it and regardless of any wood-knocking we may do. For the record, I don’t think I’m going anywhere soon!

A New Calling

2009-01-04T17:47:00.001-08:00

A few weeks ago my bishop told me he wanted me to teach the Marriage and Family Relations course during Sunday school. Now I love teaching and I have 19 years experience at marriage, so this should be a no-brainer. But there is the whole “can’t talk” thing. Details, details.

We would only meet once a month which makes it easier, but it would supplant Gospel Doctrine those weeks so the class would be teeming. I told him I’d do my best. Today was the first class. I over-prepared, had several parts to be read by class members, and the subject matter lent itself to good class participation. But still I was scared. It seems most Sundays it is all I can do to keep my head up. I never comment or volunteer to say prayers. I could do it but I don’t want to subject everyone else to my condition, especially since I sound way worse than I feel.

How could I teach?

Well, I’m happy to report that week 1 is done and it went well enough. I introduced myself, apologized for my weak voice, briefly explained the situation, and requested their patience, prayers, and participation. I was self-conscious, fearing that my medical condition would be a distraction from the subject matter.

I'll be honest; it was very difficult. At several points I had to stop, take an uncomfortably forced swallow, and then try to squelch out a few more syllables. Also, I was careful not to stray into any areas of the slightest emotions. I could not afford to do that to the class, unless the topic for the day was "How to sound like large aquatic mammals." (It was not.)

Following the class, one lady who just moved in came up and told me precisely what I wanted to hear. She said, “I just wanted to tell you that your voice was not a distraction. Once we got going and the Spirit took over it wasn’t even a thought.” How prescient was that? And for a first-timer to boot! It gives me the encouragement to try again in February.

I won’t transcribe the lesson here, but I will share a story that I shared today.

In my BYU “married” ward, a friend who was generally happy and seemed to have a perfect marriage one day looked troubled. He said, “My wife expects me to pick up my own dirty socks!” I gave him a puzzled look. He explained that he was raised on a farm, and when Dad and the boys returned from the field, they removed their dirty clothing and socks and mother would pick them up off the floor and wash them. In his frame of reference, husband and wife had certain well-defined roles and he was troubled that his wife wasn’t fulfilling her wifely obligations. I consoled him saying, “Buddy, I have the exact same problem! And she won’t wear an apron, fetch my slippers, or let me go to meetings at the lodge! Seriously, I only suggested that perhaps he should expect some role divergence since his wife wasn’t raised in his home (and because he was not currently working on a farm.)

Bonk

2008-12-24T05:48:00.001-08:00

One of the casualties of my disease is minor loss of coordination. I am getting used to my new clumsiness, and it isn’t that bad, but I’m finding the effects in the most improbable areas. If I were building card houses or juggling knives, I would expect to do poorly. I take special care when putting away dishes or using scissors, but it’s those little things that you can’t anticipate that get you.

For example, last month I hand-washed a large frying pan. While drying it, I was holding it out in front of me, near where the handle is connected to the pan. I dried the pan part first, holding it somewhat near so I could see that the job was thorough. When I began drying the handle, I failed to properly counterbalance the new pressure I applied to the front of the handle, resulting in the pan swiveling forward and conking me right between the eyes. No broken skin, no mark, but it wasn’t fun.

Of course, as I was reacting to the pain, Kara walked by and asked, “What happened?” How do I answer that? A little pan drying incident? Do I have to say? There is no way to disguise or soft-sell this.

Now, there is nothing about MS that means you can’t dry dishes safely or counterbalance cast iron. If someone said, “Dry this frying pan without hitting yourself” I could do it, no problem. It is just an example of where a 2% loss in coordination can surprise you.

Just a Primary Teacher

2008-12-14T10:42:00.001-08:00

In 2005 I was asked to serve on the Primary Board, teaching one of two Valiant 10 classes. Having served recently as Elders Quorum President and Ward Clerk, I really looked forward to being just a Primary teacher.

I took my new role seriously, but I did enjoy the easing on my schedule. It was three months into my second class when my MS issues began. I discussed it with them, but at that time the issues were not too visible, and certainly not audible.

The class comprised of ten children of inestimable potential and I was honored just to be a small part of their developmental fabric. I would do my best to teach them, to share my testimony with them, and to assure them that I cared about them. In the coming “tween” years, they might need an extra testimony to lean on, right? I hoped that somehow I could bless their lives.

I didn’t foresee that they would bless my life, in rich, direct, and immediate ways. Three of them have moved away and three more live on the other side of a new ward boundary, leaving only four that I see regularly. They have turned 12 this year.

One girl gave a talk in sacrament meeting. Because she was one of “my” students, I perked up and really paid close attention. I know, I should always pay close attention, sorry. She taught easy and practical ways to make progress on family history work. It was exactly what I needed to resuscitate my own dormant efforts.

While I am on great terms with each of the four kids, one boy goes out of his way to check on me and my capricious health. I try to reassure him that I’m OK, but given my vocal issues, I don’t sound very convincing. One Sunday last month, I was enduring a spell of utter exhaustion accompanied by a severe headache during church. The fatigue probably was related to my illness, but the headache probably wasn’t. Headaches happen to everyone, right? Fortunately, these bouts of fatigue are infrequent, but when they hit, especially with a headache, everything is worse, including walking and balance. When priesthood meeting ended, I decided to let the room clear out a bit before making my unsteady way to the exit. I didn’t want to cause undue concern, or fall on anyone! (It is just the first few steps that can be an adventure if I try to hurry the process.)

While seated, this boy came to me and asked how I was. The class was not on the way to anywhere; he had obviously come in just to greet me. I reported the headache and I’m sure he could see the fatigue. As I rose, he asked if he could help me. He is of very slight build, but he carried man-sized sincerity and concern. I took him up on the offer, figuring better to steady myself on his shoulder than to make him watch me struggle and maybe stumble. As we walked together slowly to the door I considered the irony. I thought they would be leaning on me.

Just a Primary teacher. Hah. Everyone should be so fortunate.

Uncle David

2008-12-13T05:48:00.001-08:00

I know the Christmas season is in full swing but I have another story from Thanksgiving. I am almost done. Soon after I arrived at my parents’ home in California last month, I learned that my aunt Nancy and Uncle David would be coming and staying a few days. This was good news. I had not seen them since 2004.

Aunt Nancy did not disappoint with her endless supply of anecdotes about growing up with Dad. Uncle David treated us all to music from a dulcimer that he made. It was a delight getting caught up with them. They seemed to be doing well in every regard.

Therefore, I was puzzled when during a family prayer my nephew prayed that “Uncle David would feel better.” Was he not feeling well? How did this boy know about something that I didn’t?

Then it dawned on me that he wasn’t referring to my uncle, but to his.

It engendered a curious feeling in me. I am extremely humbled by and grateful for the many prayers in my behalf offered by family and friends, but my natural instinct is to defer. I’m fine. I mean I have a long list of medical issues and limitations, but I feel pretty good. Well, most of the time. Most days. Some days I don’t. Maybe I’d better keep the divine petitions going!

Hearing

2008-12-12T09:37:00.001-08:00

Today I had my long-awaited social security disability hearing before a judge in Dallas. It was not what I expected. A court reporter showed us (my attorney and I) into a small room, and soon the judge came in. I prepared to rise but there wasn’t a bailiff and no one else rose. The judge did sit at an elevated station, was wearing judicial robes, and my attorney said, “Your Honor” a lot but other than that it seemed like a somewhat informal chat about my health.

I think it went well. The attorney thought so too. I found it interesting that the first thing the judge said was that he had reviewed my earnings history from IRS records and could not see why I would leave a job making $X per year to go on disability, unless I were truly disabled. Yeah. I’m not faking. I know, some people do, and it is his job to determine who is and who isn’t. After the hearing the attorney told me that income level, work history, and job stability are big factors, and that my situation seemed golden. Well, except for the disease and all. (I guess it is golden for her.)

In another positive exchange, after reviewing my medical file, complete with reports from a half dozen doctors, the judge asked my attorney, “Didn’t DARS (local Social Security that has denied me twice) have all these records?”

She said, “Yes, they did.”

He then asked, “Why did they deny him?”

His question may have been a bit rhetorical but she offered a theory, “Probably because of his age.”

He seemed to concur. I interpreted “his age” as being young, and for the first time in months I felt young!

By the way, we should have a ruling in a month or so.

Walking Uprightly

2008-12-11T11:51:00.001-08:00

Several years ago my father decided to combine his woodworking hobby with his burgeoning role as grandfather by making walking sticks for several of his grandchildren. These are no ordinary sticks; not only are they customized to the child’s height, they are stained, varnished, and fitted with a leather handgrip that has the child’s name. It is clear that they are each made with as much love as wood. Everyone loves grandpa’s sticks.

There is one problem, however. He now has 37 grandchildren. Not only do they all walk, they grow! Ryan has outgrown his stick by at least a foot. Due to two missions and because Dad enjoys doing other things too (like eating, sleeping, etc.) there is a backlog for new or replacement sticks.

Owing to this situation, it was with some hesitancy that I got in line. I could really use one on my walks, especially for the last few hundred feet. However, I did not want to use my illness to bump a hopeful child down the cue. These are, after all, for the grandchildren, not their parents. In fact, two of my girls are waiting. The “original” grandchild (Amanda) has not made a request, but I think she may need one to beat boys from her! When I arrived at parents a couple days before Thanksgiving, I did get in line as tactfully and unassumingly as possible. Of course, despite hosting (literally) dozens of out-of-town guests, within 24 hours of my request, it was done.

In addition to the leather grip there was a tag bearing this verse from the 84^th Psalm:

For the Lord God is a sun and shield: the Lord will give grace and glory: no good thing will he withhold from them that walk uprightly.

I know that the author and the crafter meant “walk uprightly” in a metaphorical or spiritual sense, not in a physical sense, but I'll try my best to do both. This will definitely help.

Thanksgiving

2008-12-05T17:45:00.001-08:00

I enjoyed a wonderful Thanksgiving week at my parents home. During the week I saw 7 of 9 siblings, their 6 spouses, an aunt, an uncle, a cousin and 25 of my 33 nieces and nephews (on my side). It was awesome. Add to that a scrumptious feast, lots of laughter, an impromptu dulcimer concert, and a nephew’s Eagle Court and the week was unforgettable.

After the Thanksgiving meal, we retired to the living room and each person listed four things for which they are grateful. I don’t plan on listing all the responses, or even all of mine, but I did want to comment on one of mine that may have sounded incongruous at best. But it isn’t. I said, “My health.” It was not said tongue-in-cheek or sarcastically. In fact, I got a little choked up.

I am grateful for my health. I know, I’m not well, but there is something about loss that makes you more appreciative of what you still have. I know I have a lot of stuff wrong with me right now, but there is much more that is right. My joints all work, pain-free. Blood pressure? Great. Insulin? Great. Cholesterol? Better. Aches and pains? None. I don’t speak well, but I CAN talk. I don’t walk great, but I still walk whenever I want to. Vision may be at 90%, but the other senses are fine. (Kara thinks my hearing is bad but what wife doesn’t?) I won’t go on. You get the picture. Something magic happens with whole or partial loss.

I am grateful for my health.

Girls

2008-11-22T13:44:00.001-08:00

This week, I delivered an envelope marked “Natalie Hixon” at the elementary school’s front office. (She had forgotten her homework.) I only said, “This is for my daughter.”

As I walked back to my car, I reflected just for a moment on those two words “my” and “daughter.” These two words mean so much more together than when used separately. Think about it: There is no magic in the phrases “My ham sandwich.” or “Whose daughter is this?” But when I say “my daughter” there is a tingle. A spark. Anyone who has a daughter knows what I am talking about.

When I had my first child, a beautiful daughter, I was in awe. The emotions within me were overpowering, but contained, at least until I called Mom and choked out another set of magical words: “It’s a girl.”

This was Mom’s first grandchild, but I remember her being more concerned than delighted because I was temporarily unable to speak after saying this. “David? Are you OK? Is everyone OK?!” Yes Mom. Everything is perfect. Couldn’t be better.

I will forever be grateful for girls. I marvel that I was entrusted with not one, not two, but THREE daughters. In each one I have a priceless treasure and feelings of gratitude that far exceed my expressive vocabulary.

The next time we need to take something to the school, maybe Kara better do it.

Miracle Girl

2008-11-18T23:15:00.001-08:00

I recently was found (through FaceBook) by an old mission companion. Learning of my MS, he put me in contact with a woman in his ward that had a much more severe MS case several years ago, but has since experienced miraculous healing.

She wrote me a candid, thorough e-mail message from which I am taking new hope and adopting new therapy options. I won’t get into those now, or breach her confidence, but I really appreciated an opinion of hers that I have been unable to verbalize. With respect to the disease itself she said, “I think MS is a series of different diseases that share a diagnostic profile.” Yes! How she was affected is very different (way worse) than my challenges. The causes are different, so it follows that the cures would vary also. Although the path to restored health may be unique for each person, there are certain principles that promote health for anyone.

Her thoughts on the Word of Wisdom were profound and also pointed out a key difference between healing and curing. (“Miracle Girl”- if you read this and would like to share any details of your story or some of your insights, feel free. Or if you have a blog, please provide the URL. Excellent writer, amazing story.)

Deliberate Dave

2008-11-15T09:35:00.001-08:00

I know it has been a couple weeks since I posted to this blog. I am sorry to anyone who may have repeatedly sought an update but found none. Ironically, the changes in my condition can vary by the hour, but usually each day is about the same as the previous one. I feel lucky that the past few months have been somewhat stable. It makes for good living but uninteresting blogging.

Over the past couple weeks I do have to admit that my walking has worsened. Not crazy worse, nothing dramatic, please don’t be alarmed but I think it is more noticeable. I walk gingerly. I have not been doing my "distance walking." I am unsure if this is a cause or a result of this latest swoon.

Another word I would use to describe a lot of things I do is “deliberate.” Example: You know how when you get into your car, you sit down in the car and swing your feet in almost simultaneously? Or you step in as you’re sitting down? I noticed that I split up things like that. Sit. Swing. It isn’t a problem, it is just deliberate.

Also, the “exertion fatigue” seems to be way worse. It is maddening. For example, last night I heated some soup for Erika and then had to lie down for a few minutes. C’mon – soup heating? It isn’t that strenuous. We even have an electric can opener! To be fair, I did trudge up the stairs to ask her about the potential meal, but still!

I don’t get that whipped every time I do anything, but I can’t really see it coming. (This is not some elaborate scheme to evade Thanksgiving dishes at Mom and Dad’s.)

Man, I can be such a downer. I'm just trying to be honest, knowing that readers care and that I will be with a lot of family within a couple of weeks. I'm trying to pre-empt comments like "Dude, you're deliberate."

Actually I don't care if anyone calls me names. What am I going to say? "Mommmm! Roger called me Deliberate!" She would just say, "Deliberate-Schmeliberate."

Rest assured that I don't need anything; I know I already have your sympathy. I'm not "sick" as much as "broken." Well, slowly breaking, I guess. For now. But I am not unhappy.

Lengthening my Amble

2008-11-02T12:22:00.001-08:00

I have been neglecting my jogging efforts recently. I don’t really have a good excuse; I have time and the weather has been very temperate. I have noticed a worsening in my walking over the past month or so, especially the first few steps after sleeping or sitting for a while, but once I get going I’m fine. Other than that I feel fine though, good, actually. But the walking trouble can’t be the reason. I could have used this excuse from the beginning. It’s probably just laziness.

However, on the advice of my neurologist, I’m foregoing jogging. She said that safety concerns aside, it would be far better to walk 1,000 meters every day than to jog for 200 and walk 200. So starting tomorrow I’ll start pushing myself with a different emphasis. I’m not totally giving up on the trotting idea; perhaps it will just have to await a turn for the better.

On Helpfulness

2008-10-25T15:29:00.001-07:00

One of the more vexing problems related to my limitations is, surprisingly, domestic helpfulness. I know, who would have thought? Here’s the thing: as I’ve mentioned before, I’m not much help around the home, but it isn’t for lack of effort. I’m not the patron saint of helpfulness or anything, but I try. Unfortunately, my efforts have resulted in marital strife rather than marital bliss. What? How?

Here's the general pattern: I take something on, without being asked, and usually, despite a harrowing effort, I don’t do it right, mess up Kara’s system, or leave the job in a state that requires Kara’s immediate attention to complete or remedy. Even if I do it well the value of the task rarely justifies the amount of energy I spent on it. I'm afraid it is a manifestation of denial on my part. Then I'm all wiped out and cranky.

So while the effort may be praiseworthy, the result is my being totally useless for a stretch or it results in more work for Kara right now, and she’s already stretched pretty thinly. When you are subconsciously expecting a medal, and you instead get ire, the result can range from discouragement to discord.

I do not mean to imply that Kara is ungrateful. I am just admitting that my zeal could be channeled more productively. We are making strides, however. I have learned that dishes, vacuuming, and wiping down anything are safe zones. Preparing a meal is pretty safe as is making the bed. Laundry help is not usually welcome because she has a system and I invariably mess it up. Anything involving the purchase, installation, or transportation of electronic equipment is a definite "no."

Don't get the wrong idea. I'm not Mr. Clean all day, dusting this and scrubbing that. Despite my illness I could be doing a lot more than I do, but, after all, I am still a man. C'mon, let's not get crazy.

This morning Kara asked what my plans were for the day. I told her a few things I had in mind but she vetoed two of the six things. She continued to tell me a few other things that she didn’t want me to do. I’m the only man I know that has a “Honey Don’t” list!

My Boy

2008-10-23T10:03:00.001-07:00

Recently, a friend and his wife had their first son. I congratulated him but he said, jokingly, “Reading your blog about Speedos and girlfriends is scaring me!” He was teasing, I know, but lest there be any doubt from any of my readers, I wish to be clear in one thing: despite the dirt bikes, video games, and ill-advised purchase of European swimwear, my son has been and continues to be an unspeakable joy to me. I’m afraid that parenting of teens sometimes gets a “bad rap” only because it is easy to quantify things like text messaging and curfew violations. I have yet to find the words to adequately describe parental gratitude and delight.

And Ryan is special. He has been congenial (and extroverted) since before he could speak. He is musically gifted. His natural brightness is only obfuscated by his extraordinary procrastinating abilities, which I hope is transient. But these things are not why I say he is special.

These past three years I have observed him deal with sadness and trials that I never had to bear, especially as a kid. I refer to both the declining health and abilities of his dad and to the tragic death of his 2-year-old cousin Sarah.

In our church, when a boy turns 12 he receives the priesthood in a simple ordination ceremony at church. Although by no means required, the boy traditionally wears a new suit for the occasion. Grandparents attend the ordination if they can. It isn’t a huge deal, like a bar mitzvah, but it is special. In the summer of 2005 Ryan’s big day was approaching. He had a new suit from JC Penney and a new pair of shoes. He would look so grown up on Sunday, the day after his birthday.

None of us foresaw that he would be first wearing that suit on his birthday, Saturday, at Sarah’s funeral. I’ll never forget the sight of those new shoes covered with big tear drops as we both carried her coffin. He didn’t say a word. He understood that the birthday and priesthood celebrations would be muted. He never questioned this or complained about it. I think he grew up a lot that week.

With respect to my illness that began in 2006, I’ve witnessed a level of compassion in him that is well beyond his years. Most of the time, he is just good old Ryan, belligerent, self-focused, displaying characteristics typical of his age and gender. But if you watch him very closely, especially when he’s with me, you may see an undercurrent of concern. Little things like how he takes great care when parking in the garage to leave me enough room to get out comfortably, then he waits in the garage for me. On those days when I’m a little wobbly, without being asked he’ll walk very close to me and offer assistance. He notices. He always keeps an eye out for me. A good example of this can be found in my post called Steady on my other blog back in April (before I started this blog.) If you haven’t read it and would like to, click here. Ryan periodically asks me how I’m feeling; he really wants to know. He even reassures me on days when I’m down. I hate that he feels this burden but I love it too, and am completely humbled by it.

One Saturday afternoon just the two of us were home and I needed to take a quick shower. While showering I inadvertently kicked over a couple of shampoo bottles. (It had nothing to do with MS; it was more because the MRS. buys too much at Bed, Bath and Beyond.) Within seconds I heard Ryan’s voice through the door, “Are you OK Dad?” I asked him later what had prompted this query and he said he had heard something and just wanted to be sure I hadn’t fallen.

The thing is, the sound wasn't that loud. Who listens to their dad showering, just to be sure he's OK? What other boy would do that? It’s like having my own guardian angel in the unlikely personage of a teenaged boy.

Good Friends

2008-10-18T20:10:00.001-07:00

A small, insignificant parental disappointment of mine is that not one of my children like jam or jelly of any flavor. I don’t know the difference between jelly, jam, preserves or marmalade, but I love it all, especially raspberry, blackberry, peach or strawberry.

A more serious parental lamentation is that adolescence seems to have robbed me of friendships with my children that flourished when they were younger, especially with my son. We shared so many little inside jokes and either one could make the other giggle with only the slightest provocation. One day eight years ago, we were seated in adjacent chairs getting our hair cut and I made a gesture to get him. He giggled and giggled, and kept telling me to stop, with his slight but endearing lisp.

I understand that children mature, and that relationships change, they have to, but that doesn’t mean I like it. Also, although I don’t like to admit it, I believe that part of the alienation results from some of the symptoms of my illness. Energy levels and patience have both declined precipitously and I am not as light-hearted and fun as I once was. I am trying to address these issues.

This morning I enjoyed a brief respite. I was taking Ryan to driving school, and because we were running a few minutes late, neither of us had eaten breakfast. I offered to buy him a donut at the shop that is next to the driving school. Because we were already late, he declined. I offered to get it for him and bring it to him. He declined the offer, explaining that they would be leaving in the training car as soon as we arrived.

Letting playful Dave out for just a moment, I asked, “Can I get one for you anyway, but just eat it myself?” He didn’t miss a beat and replied, “Sure. I’ll have a jelly-filled.”

Angel Lost

2008-10-13T09:22:00.001-07:00

Four years ago (and a couple of ward splits), I was called as ward clerk over finances. Even with my professional background in finance, there was a lot to learn. Fortunately the ward clerk, Steve, who trained me, was as knowledgeable as he was patient. He and his wife Nita had two children roughly the ages of my youngest, and they were approximately my age, give or take a year or two.

A hallmark of this family was how kind they were, especially Nita. So soft-spoken, never saying anything unkind or even flippant. I think she was the compassionate service leader in the Relief Society, but maybe not. She wore compassion like a cloak. Last month she gave the benediction at stake conference when Elder Nelson was there and I thought, “I’m glad they chose her; she is charity and purity embodied.”

Because I was in the lobby, I could not see her. Kara told me that if I had seen her, I would have seen that she was not well, ravaged by cancer. Yesterday, in an oft-repeated reminder that mortality is not deferred by virtue, Nita died. I’m sure there is at least one more ministering angel in heaven today.

Sadder but Wiser

2008-10-08T19:33:00.001-07:00

One of my favorite MS medications has the unfortunate side effect of making it difficult to fall asleep. Because of this I routinely take a prescription-strength sleeping pill every night. Sometimes I manage on a half. Anyway, Monday I felt I needed a whole pill for various reasons. (Maybe part of this was because the Angels were eliminated that night and I didn’t want to lay awake thinking about the botched squeeze play and happy Red Sox.)

I thought I’d give the pill a head start, so I took it before going upstairs to tell Kara good night. While with Kara, I remembered a few things I needed to discuss with her. Five minutes tops. When I got up to leave the room, she noticed that I was really off-balance. She knows that means sleeping pill and chastised me for taking it before coming upstairs. I just laughed it off. OK, I’m a little dizzy but I’ll hold the hand rail going down the stairs, I would be fine. It wouldn’t be that bad.

And it wasn’t. I made it down just fine and despite a few harmless wall brushes, I made it to my bedroom just fine. I could tell that I was slightly more impaired than I usually am but I’m getting used to it, and pretty adept at compensating moves.

I turned off our bedroom light, and turned to make the final two or three steps to my bed. The combination of the turn and the darkness (which really plays with my balance) resulted in me helplessly crashing down into a free-standing full-length mirror. There was no broken glass or broken flesh, but wow, did it hurt. I hit my head pretty hard and I somehow broke the leg off the mirror. Two days later and I still have no visible bruises or anything, just a sore ear and neck.

It wasn’t pretty (though no one saw it, including me) and it wasn’t funny at the time, but it was educational. It was so preventable. I will be more careful about when I take the sleep help and be more cautious in the dark. As I went to sleep I considered that as bad as I felt at least I didn't miss the bunt on a suicide squeeze in the last inning of an elimination game with the score tied!

(My handiwork)

Goals not Forgotten

2008-09-30T13:54:00.001-07:00

Although I have not reported lately on progress towards my two simple (but seemingly impossible goals), they are not forgotten. I have been walking almost every day, but not running again yet. My fall was 20 days ago and I am 100% healed, but I think I’ll invest in some protective gear before trotting again. I think I was just too anxious to make progress too quickly.

Regarding my solo vocal performance, progress is even slower. Monday I went to speech therapy again. She is encouraging. She says that my vocal strength is greatly improved. The problem continues to be that I involuntarily strain when trying to talk, which stifles the voice.

While there, she has me do a lot of drills. For one series, I hold my larynx down and focus on not straining any muscle in my neck or throat. Then I mimic certain sighs, hums, and short phrases. In one, I’m supposed to get a good hum going, forward in the mouth, and then say some “M” alliteration like “Molly made muffins” in a low monotone voice. I have to close my eyes and really concentrate. Take a deep diaphragmatic breath. Start hum. Voice forward. Don’t strain. Vibration on the lips, out of the throat. Good breath support. Don’t strain. Relax. Chin up. Don’t force it. Then Allison says, “You strained and cut off the words. Try again.”

Then after one she said, “There! That was good.”

I croaked, “Yeah, if I were reciting a dirge, blindfolded.” I thought the comment was clever but she reprimanded me. She said that thought processes like that are counter-productive. She’s right; I am impatient and I can’t seem to help poking fun at the baby steps I am making. (I did swallow my “robot reporting on cooking class” comment.)

That’s the thing: you cannot hurry this. If you try, it actually impedes progress. It just seems so silly to make such an inordinate effort for such paltry results. I have earned a master’s degree, learned a foreign language, and have lived with teenagers since 2004, but saying the nonsense phrase correctly, without straining, is harder than them all. Combined. I am trying to “re-wire” signals that worked fine for 40 years, and I don’t really know how it is done.

I’m having a hard time thinking of an analogy. Maybe it is like trying to stand up without using your leg muscles. No hands either. I only know one way. I’ll just have to trust her and take it one tiny step at a time. I guess that is the only way to reach either of my goals.

The Lullaby Bank

2008-09-22T11:04:00.001-07:00

When I was 17, as I drove to work I often listened to the “My Turn of Earth” cassette. I know, geek check. My favorite was Angel Lullaby and I would sing along. I really wanted to improve my singing abilities. I was fair to above average, but seriously, my voice was not memorable, even after a few voice lessons and hundreds of hours practicing. It was serviceable, I could sing on pitch, and I could sing various choir parts. I sang solos and duets at church, wedding receptions, and at a debutante dinner in 1986. (I think that was more for my eligible bachelor status than for my crooning abilities.) At BYU I had a lot of fun singing in a roommate quartet, and we sounded pretty good. I was always better as part of a group than as a soloist.

In 1991 my daughter was born and I became a soloist again with nightly performances and a captive audience. And I could sing Angel Lullaby too! My focus quickly changed from “getting good” to soothing and calming. This practice continued in various forms and for other babies for the next 15 years. It was awesome. I used the bedtime songs to teach patriotism, Spanish, reverence, and tradition with an underpinning of love for music and song.

When the oldest two were 7 and 5, I tried to teach them to harmonize. This was difficult. I explained the concept, had them sing a familiar melody, and I would softly sing a harmony. It didn’t work. They always would immediately follow me. One night, after dozens of failed attempts, they got it. I told them to really focus on each other and they stayed on melody while I sang the tenor line to Silent Night. It was so awesome. We all were thrilled. Amanda even suggested we form a group. We could be the Dad, Ryan, and Amanda Group, or DRAG for short! Maybe not.

As they matured, the older ones opted out of bedtime songs BUT the love of song remained. The eldest loved to sing, and she was OK, but, like her music mentor, her talent was pedestrian during her “tween” years. The boy showed real talent at a young age, which was gratifying, but never the goal. 3^rd born sang on key, but was somewhat reserved, especially compared to her “stage presence” brother. I could tell at a young age that the baby had a good ear too, and she loved to hear herself sing. I did too, but I was unsure if she sounded as good to people that weren’t her doting father.

In 2006 as my voice failed I mourned the lost ability to sing to my young girls. As I’ve mentioned on this blog, we have found alternatives, such as humming or them singing to me. It is nice, but not the same. I really miss it.

Yesterday my kids sang together at church and I was forcefully reminded that although I am presently unable to “make deposits into the lullaby bank,” the years of deposits made are not gone. In fact, they are paying rich dividends beyond what I could have imagined. My deposits were joined by contributions from their mother, various music teachers, and choir leaders. Over the past few years, Amanda’s voice took on a beautiful, rich tone and her abilities have kept pace. Ryan’s skills have survived the adolescent voice change and showmanship tempering. Erika took voice lessons for a while, and her voice is amazing, but she still holds back. Recently I enjoyed an Erika concert when she thought she was alone at home. Natalie? She’s been surrounded by music her entire life and she is a natural.

Sunday they sang an inspiring arrangement of I Need Thee Every Hour at church. I can’t rightly take credit but my heart swelled with gratitude and pride. To borrow a line from Dad (that he spoke of my brother) If fatherly pride is a sin, then I stand in need of repentance.

Limit Learning

2008-09-18T20:21:00.001-07:00

Today I helped fill our ward’s Bishop’s Storehouse assignment. I wasn’t sure what we’d be doing, and whether or not it would be something I could do, but I knew I was available. Besides, what would be the harm if I got there and they needed us to read fine print while doing jumping jacks and singing? I could just excuse myself, right?

Fortunately, we just filled orders and re-stocked shelves. The Church welfare program is so awesome in the storehouse endeavor. Reading the order form took some effort but it wasn’t too bad. My first order was a whopper and it took me about 30 minutes, partly just finding the right product. Everyone else was working more quickly, but I reminded myself that it wasn’t a race.

When I began filling my second order, I noticed my familiar foe of fatigue setting in. I wasn’t sleepy, but my coordination and balance started eroding. This was not taxing work, but I guess it raised my body temperature enough that my feet stopped responding correctly. Great. I was in no particular hurry, but I did not want to create a spectacle. I found a chair at the front of the store and started taking little breaks, pretending to be studying the order form. Well, part of it wasn’t pretend because my eyesight worsened too.

This order was even bigger than the first one so the cart started getting really heavy. This was a blessing in that it provided a more sturdy support for leaning! When I get “exertion fatigue” I have a hard time even standing upright. I start slowly falling forward. It is so weird.

OK, I knew this wasn’t a race but I was taking really long time. But I needed a little break. I sat down for a few minutes but it is hard to loaf in such a productive environment. My cart only lacked toothpaste, raisins, strawberry jam and 18 rolls of TP. C’mon dude! Stand up and just grab the jam and the raisins, then come back and sit for a minute. I know, chronic illness, blah, blah, blah. But it is 25 feet away and you are 43, not 93 for crying out loud. Well, I did it, jam and raisins were safely in the cart but I barely made it back to my gerontology chair.

OK, the non-food items are on the last aisle, I encouraged myself. I could do this! Just don’t make a scene; it isn’t fair to everyone else.

I rested but I was berating myself pretty good. I realized that I didn’t need to be a hero; I could just ask someone else to finish my list, oh but wait, I can’t talk. Well, barely. Just do it, you wimp! It is toothpaste and toilet paper, not the gosh dang Crusades. Get up and finish the order! I used my laden cart as a walker and got the toothpaste but while loading the TP my legs staged a little coup d’etat. (They don’t care if I’m almost done; they were.) I slumped over my cart heavily and then somehow found the strength to grab the last two rolls. I set them on top of the burgeoning pile. Then one roll fell off. Big problem. Gravity was only one-way for me at the moment. Fortunately my friend Michelle was standing nearby and noticed the errant roll and picked it up for me. I think she also noticed that I was laboring to stay upright and she accompanied me the few steps to the cart drop-off place.

Now I just had to return the clipboard up front, but without my “walker.” If I could only get back I could sit down and cool off. 20 minutes and I would be fine. It was at this point that I did the most difficult thing I had to do all day. Michelle asked if I needed her to help me walk back. Everything inside my head screamed “No!” but better sense prevailed and I sheepishly said “Yeah, I think I do.” She held me up as we began our 80 foot sojourn. I can get so pathetic! Half way there my friend Tim jumped in to help. So much for not creating a scene.

It’s not wounded pride; it’s just that if I had been a bit more careful I could have done it. When will I learn?

The senior missionaries offered to get me water or a banana. It was not a matter of blood sugar or hydration. I was not faint. I just had to rest for a spell. I did, and after lunch I had relatively little trouble with the meat orders or re-stocking shelves. But I know everyone kept an eye on me.

I enjoyed myself, and am glad I went, but I am acutely aware that my scant production did not outweigh the burden of concern that I levied on the party, and for that I am sorry.

If a picture paints 1,000 words, maybe I should take up painting

2008-09-12T18:35:00.001-07:00

Yesterday was a quiet, peaceful morning. At 10 a.m. I needed to leave for my speech therapy appointment. I went to say goodbye to Kara and found her taking a well-deserved morning nap. You see, she oversees the kid send-off every day from 5:30-8:30 a.m. and then has been going to the gym all week. Yesterday she took a day off from the gym and I as I kissed her goodbye, I realized that I didn’t want to go. It has been four months of drills, scopes, stretches and exercises and I’m not certain that the “improvement” is not imagined. I’m so tired of the whole thing. I just wanted to crawl into bed too and hide from the whole deal.

However, I cannot afford to give up hope. (Besides, I know she didn't want any company.) I went because I still hope. Yesterday the motivating factor was that I hope that I will always be able to tell Kara how beautiful she is and that I love her. (Even this is not a matter of speech; the words do not exist.)

Fall is in the Air

2008-09-10T08:38:00.001-07:00

Yesterday I set a new record. I realize that a daily update of my jogging progress is not only unnecessary, it doesn't make for good reading: I went a bit farther today; it was hard.

So I thought today I'd actually show you my block from Google Earth. I start jogging at the upper little yellow box and run clockwise along the sidewalk. (I added the little yellow boxes, they are not really there.) Yesterday I made it all the way to the second box, the first house on the street parallel to mine. Almost half way!

This morning I almost made it to the second walkway. You know, every day I stop when I think I'm about to fall, but I'm never 100% sure that a fall was imminent. I didn't have to worry about that today as my hands actually outdistanced my feet. Yes, I turfed it. You know, I jog on the sidewalk in part so that if I begin to fall, I can try to go either left or right and have a soft grassy landing. But that's just the thing about falling, it often comes with precious little, if any, warning. And so it was today. I mean, I was laboring, and probably should not have been pushing SO hard to reach my goal, but in an instant I was prostrate on the pavement, with a painful 4-pronged searing: both knees and the heels of my hands. Youchie.

I was only down for about ten seconds, and then I was back on my feet. My hands were scraped but not bleeding. I didn't want to look at my knees just yet. It really stung, BUT I didn't cry! (Apparently I cry easily at sadness, not pain.)

I am happy to report that I did not hit my head or face, and that nothing seems to be broken, twisted, fractured, or strained. Just a pair of skinned knees. Kara, who would have laughed aloud if she'd witnessed it, wasn't laughing when she saw my knees. She said, "Maybe you shouldn't run anymore." Maybe she's right, but I'm not ready to let go just yet; I just need to be better about knowing my limits, and today was a good little lesson with a relatively small price paid. (Well, I've made the down payment and I've financed this lesson over 2 or 3 days.) Also, I could start wearing protective grar or jogging on the grass part of our Hike n' Bike trail. Lots of options.

Jogging Buddy

2008-09-06T14:46:00.001-07:00

This morning Ryan agreed to accompany me on my daily jog/walk. Before I began I warned him that he might be pleasantly surprised the first minute, but that after a trot and a stroll, my walking gets pretty bad, and I look pretty retarded. He did not appreciate this disclaimer, as if I were implying that he might be embarrassed. He is over that, if he ever had it.

Yesterday I could not make it all the way to the corner, but that is OK, I understand that every day I may not go farther than the last. But this morning I really wanted to reach the corner. This would be the first time I had an audience, and it was my son no less. I began my mini trek and Ryan jogged alongside, providing encouragement such as "Feet up, you can do it, feet up, c’mon.”

If there were ever a man encouraged and motivated, it was me this morning. Who wouldn’t be? However, in a striking reminder that grit seems to be impotent against my foe, my feet stopped twenty feet short of my goal. I could not have exerted more. Oh well. Maybe Monday.

We continued our walk and, true to my warning, the last few home lengths were a real chore for me. As I cautiously headed up our walkway, and successfully navigated the one step, Ryan started singing the Rocky theme song. How perfect was that? Maybe I'll take him along more often.

Things are Going South

2008-09-04T07:32:00.001-07:00

I have turned the corner in my recent jogging trial. Literally. I made it to the corner (6 ½ home lengths) and kept going another 30 feet. So after a week of exclusively jogging into the morning sun, I have now done a bit of southward ambling.

Do you know what hurts the most when I am finishing the last few feet? You’ll never guess. It is my larynx, the whole underside of my jaw, actually. I guess it makes sense in a way. My otolaryngologist and speech therapists have explained that we carry a lot of anxiety there, and a big part of my therapy is unwinding that stress. When I am jogging, anxiety temporarily spikes as I fear that at any step I may crash headlong into the pavement. I’m sure this anxiety isn’t good for my voice, but it is only a temporary anxiety that is remedied by a leisurely stroll through my neighborhood. OK, that's not entirely true, I’m still anxious out there walking on fatigued legs, but it sounds better than “before a leisurely sit at my desk.”

More Progress

2008-08-30T09:08:00.001-07:00

I really didn’t feel like taking the jog/walk again today but I did it anyway. I have to remind myself that this whole premise is doing something that my body doesn’t feel like doing, pretty much ever. And it is blazing hot out there. That doesn’t help.

I actually felt pretty OK and in control the first home length. I focused on lifting my legs during the second length and during the third I noticed some soft, involuntary groaning. I think it must help. Three was my goal today. But when I reached the third walkway I didn’t stop. This was becoming terribly uncomfortable but what did I expect? A lounge chair on the Mexican gulf coast? I made it to the 4^th walkway and then had to stop.

OK, my quick reckoning makes that about 100 yards (the homes in our neighborhood are pretty large). Am I really disabled if I can jog 100 yards? Is it not disrespectful to people who really are handicapped and struggle to amble 3 feet? I mean no disrespect, but I don’t categorize myself as immobile, at least not yet. My disabilities are more in the vision/vocal fields but clearly there is something wrong with gait, coordination, balance, and leg strength.

Why do I even have these thoughts? It’s not like I’m cheating the MS gods or anything. I continue to be hopeful that I can accomplish my one lap goal, even though I know it may not be possible and I know I’m not going to be on the medal stand for it. Well, maybe if they have The MS 500 meters in London, 2012! 47-year-old bracket. I’ll keep you posted!

Progress

2008-08-29T11:25:00.001-07:00

I didn’t feel like taking my walk today because I had a headache. But I did anyway. I jogged a lot farther than I thought I could. I was shooting for the first mailbox, maybe the street light, but I was able to go two houses! (just beyond the 2nd mailbox) It wasn’t pretty but it was definitely jogging. The ensuing walk did get pretty hard the last few houses but I made it.

Goals

2008-08-28T14:10:00.001-07:00

Last week after a discussion with my otolaryngologist about how diaphragm strength affects voice, I decided that I somehow need to try to strengthen my midsection. I know that I am generally weak head to toe, but doing a few sit-ups couldn’t hurt, right?

It was worse than I feared. I could not do a single sit-up! How sorry is that? Not one! It is no wonder I can barely talk! Ten years ago when I would do sit-ups, I would stop at 20 or 30 when the searing abdominal pain became too great. It’s not like that now. It doesn’t hurt at all, I just can’t. I continued to try twice a day and was able to work up to a whopping 4.

This week speech therapist lady suggested that rather than focus on a limited muscle group, that I go for a walk each day or something similar to slowly strengthen everything (besides other benefits.) So the sit ups are on hiatus for a few days as I give the walking a chance to shore up everything else.

Three days in and I don’t feel any different BUT I am enjoying my walks. I just cruise around my block each morning, which is not too taxing. The first day I felt so good that (in the spirit of the Olympics) I decided to “sprint” last fifty feet just for fun. Uh, didn’t happen. After two very labored jog-steps I reverted to just walking. Yesterday for some reason my legs were extra weak so I was happy just to make it back home upright. But I did have the thought that if I wanted to try jogging a little bit, I should try it at the start of my walk when my legs were fresher.

This morning I felt a lot better than yesterday so I gave it a try right at the start. I did six steps. It felt really strange. And I know that’s nothing to write home about, but I was very pleased. You know, if I tell myself I can’t run, and don’t ever try, I’m guaranteeing that I can’t. There are no MS rules that say you can’t run, it’s just that everything in your body is saying, “Don’t.” Well, not your heart. It is saying “Try.”

My new goal is to be able to jog around the block. I know, maybe it is impossible, and even if I were to pull it off, so? It is one block. It will probably take less than four minutes. Don’t I have more noble goals than that? Sure I do, but this one seems monumental to me at present. Another goal I have, that may seem like a small thing indeed is to sing a musical number at church. But good, at least as well as I sang the last time I sang over the pulpit in 2004. I know these are small things, and my body might not ever achieve them, but they are huge to me and that is what I am working towards.

Just David

2008-08-25T07:28:00.001-07:00

On the last post, my baby cousin left a kind comment that I don’t know that I deserve. I mean, I’m still just David. Here is the thing: we all have talents and gifts, right? One of my sister’s myriad talents is organizing decorative pillows. I stayed a night at her home and the guest bed was like a work of art. I didn’t want to mess it up so I just slept on the floor. Not really, which she knows because she had to fix my feeble attempt at throw-pillow reassembly. I bet she spends no more than five minutes a week on this skill. What if she suddenly had four hours a day? Might she be even better? It is hard to imagine but yes, I think she would be. And if that is all we saw of her handiwork, we might be impressed. What we wouldn’t be seeing is her neglect for everything else.

For the past 15 years I’ve enjoyed writing, and I think I do OK at it. But over the past two years as my MS symptoms have limited most of the few talents/hobbies/skills that I had (like singing, reading, working, and playing softball and tennis) I have focused on writing, which has been mostly unaffected. Combine that with the blogging phenomenon and I end up with some pretty powerful David-propaganda. It is akin to the keen sense of hearing that the blind develop.

But that isn’t the whole picture. My wife, who has never been a fan of my writing, sense of humor, or blogging, experiences the whole me. In her world and with her priorities and pressures, I’m not nearly the help I used to be, despite being home all day. I will say that it is not for lack of effort. Whereas before I probably exerted 95 on the husband scale with 97 results, my “effort” now is probably at 120 with a result of 30. Given our present cares, she can’t grade on effort, so she’s faced with the very real 70% husband helpfulness slump. It Is maddening to both of us.

I was touched by Joanna’s kind words, as I am everyone’s. I feel blessed to call her cousin too. I guess I just wanted to go on record that I am not drinking, or necessarily selling, the Kool-Aid. I’m still just David, but with an inordinate time spent writing!

Lesson in Optimism

2008-08-21T18:48:00.001-07:00

Last night following Ryan’s court of honor, I met a bi-lingual woman from a neighboring ward. With her was a girl that was high-school age and had just moved from Colombia. She spoke very little English and was nervous about school, which starts next week. I spoke a little Spanish to her, although my vocal issues are apparently bilingual too! I was able to introduce her to Amanda and Ryan, who both speak a little Spanish, and they exchanged cell phone numbers.

Later that evening I mentioned to Ryan that it was frustrating that I know Spanish, but I can’t speak much of it. It seemed like a waste. He said, “But you still understand it. If you were in Mexico or somewhere, you could at least understand what they were saying, even if you couldn’t say much. That is better than most people.”

You know, that was an excellent point. I need to be more of a “glass half full” guy.

Opening the Floodgates

2008-08-14T11:26:00.001-07:00

3 Nephi 17:5

And it came to pass that when Jesus had thus spoken, he cast his eyes round about again on the multitude, and beheld they were in tears, and did look steadfastly upon him as if they would ask him to tarry a little longer with them.

I noticed two things in this verse that I had not noticed before. First, they didn’t ask him to stay. He perceived it through their steadfast looks “as if they would ask him.” The fact that our Savior is infinitely perceptive and compassionate is where my mind usually goes, but this time I wondered why they didn’t ask. Did he seem unapproachable? Did it seem like he was on a tight schedule.

10:30 a.m. - Nephites
11:00 a.m. - Other sheep.

Or, more likely, did it seem like too great a blessing to ask for? Probably. I think I am guilty of this at times.

The other thing I hadn’t noticed before is that they were in tears. Were they just so moved by his presence and counsel or were they tears of sorrow anticipating his pending departure? I’m sure it was some of both. Every time I cry nowadays I deride myself, and complain about it being a neurological condition. Why do I feel the need to do this? I suppose it is societal, even though I’ve never worried much about society’s definition of masculinity. (By that I mean that I don’t have a gun rack, or even a gun, a fish on a hook creeps me out, and I sang tenor.) I don’t know that it is a manhood thing as much as I fear that I am making everyone else around me uncomfortable.

I don’t know, but maybe I shouldn’t be so hard on myself, or make light of that emotional manifestation. Not only did the multitude have tears, but Christ openly wept (v21) and wept again (v22). It happens, and it is a part of who I am at this time. No more apologies. No more jokes.

Good for Little

2008-08-13T08:27:00.001-07:00

Yesterday I had my 4^th infusion. It isn’t a bad procedure, just an IV prick and about two hours of your day. The worst part is playing co-patient roulette. The infusion suite seats two, so you always run the risk of being opposite a patient with a lot of medical/emotional issues that require extra vigilance from the attending nurse. It does make me feel very healthy and blessed in comparison. Most of the patients are just fine, but there are a few special cases.

The nurse is good though. She’s a little older than me, and seems to be very knowledgeable and level-headed. More than that, she is extremely kind and compassionate. I suppose that is the make-up of most nurses, but I realized yesterday that she really goes above and beyond the call of duty, even for nurses. I was the last patient, and decided that as I was leaving, I should thank her for not only her medical knowledge and skill but also for her kindness and compassion. For a guy that often strains to find positive ways to contribute to society despite limitations, this was good. My voice is still strong enough to compliment.

And I did. I got as far as the “skill” part when I was forced to contend with the thin veneer of my emotional stoicism. Dang. I felt it starting to choke my words so I hastily cut off the comment at “kindness.” I am a mess

Weight Loss Plan

2008-08-05T08:14:00.001-07:00

Dave’s Simple 3-Step Diet

Get MS
Begin treating MS symptoms with steroids and interferons, and then address the drug side-effects with anti-depressants, sleeping pills and a handful of other stuff that you can’t even classify.
Eat whatever you want

Warning: Step 1 makes you want to eat as healthy as possible. Step 2 makes you not want to eat at all, so Step 3 is not as fun as it may sound. Perhaps Step 3 should read “Three times a day, muscle down something to raise energy level from zombie to pathetic.” OK, that is an exaggeration but you can’t dispute the results: I’ve lost 25% of my body weight in just two long years!

1,000 Sermons

2008-08-03T15:31:00.001-07:00

While I was in Arizona visiting family, twice I found myself at the start of comments that I couldn’t finish. Actually, I eventually was able to fight through and finish one of the comments but the other was more of a story and there was no chance of finishing it. I felt there were several large waves of emotions waiting to crash down on me if I proceeded. After a couple of false starts, I wisely aborted. I considered that it would be easier to write than to verbalize, in more ways than one!

(Side note: When the first wave overtook me, one of my sisters said, “It’s OK, we understand. We read your blog.” Yes! It was so great that I didn’t need to try to explain it all again. My brother’s wife then commented that the loosely-tethered emotions are akin to having PMS. Good point, besides, it is just one more letter than MS.)

Anyway, we were talking about raising teenagers and one of my younger sisters said, “David, I vaguely remember you and Dad arguing, something about music.” I’m not sure if she wanted me to confirm and flesh out the memory or if she wanted to know how I felt about that debate now that I am the father of an oft-belligerent 15-year-old son.

I didn’t wait for a question; I jumped right in with the story; at least as far as I could before sounding like a tortured seal with a cold! But here is the story.

It was 1981. I was 16 and had purchased one of my very few albums. (I think I bought three during my entire teen years.) Unfortunately, the last track contained a vulgarity. I was embarrassed by it, and each time the music reached a certain point, I quickly got up and found the volume knob so I could mute the offensive word.

When Dad learned of this he was concerned. Seated alone at the dining room table, he voiced his concern over the inappropriate lyric. His comment was neither inflammatory nor untrue. However, for some reason I dug in and tried to stubbornly defend my position. Any position. (I think it had more to do with the sibling that had “ratted” on me and was not out of earshot of this discussion than on my affection for this somewhat drippy rock band.) My arguments included that I didn’t know about the lyric when I made the purchase, I hear that word and worse at school each day, AND I always turn it down anyway. I used the “logical extremes” tactic that if he thought I should get rid of the record, then perhaps I should also quit school. I also used the irrelevant “big picture halo” approach, by pointing out that there are worse sins I could commit and at least I turned it down each time. And I even combined the two with “I try so hard to be good and then you focus on this one little thing and think I’m an evil sinner.” (Oooh, I loathe that approach and believe me, I’ve been heartily repaid in-kind for using it.)

The debate grew longer and louder. He couldn’t concede his point that I probably shouldn’t have such music in our home and I wasn’t about to concede my points that (1) it was far better than schoolyard talk and (2) through my efforts it was harmless. Notice that our positions were not necessarily opposites. He wasn’t arguing that schoolyard jargon is better than the lyric, nor was he saying that it was harmful despite my censoring. But those were the only points I could defend.

Anyway, these kinds of debates typically end when someone storms off in exasperation. It is a tactic often employed by the party that has the weaker case, as if the “storm off and door slam” somehow add merit to the argument. And so it was that night. I angrily reiterated my points and marched upstairs to my room. I didn’t often slam the door but I did this night. I wanted to really emphasize my points by banging lumber! Oooh I was mad. I lied in my bed, seething. I mulled over my points, entrenched myself deeper in my flawed logic and continued to convince myself that I was right! Ten minutes later I was still fuming when it happened.

There was a soft knock on my door. It was Dad. His countenance had changed. He wasn’t there to argue. He apologized that he had gotten angry, and asked my forgiveness. He added some words affirming his high esteem of and love for me. That was it. There were no conditions nor counsel, no preaching nor pride. He turned and quietly left the room.

A thousand sermons on humility (or on effective parenting) were never more powerful. I was no longer seething. I wasn’t even angry, except at myself for being so stubborn and difficult. Literally within a minute I fetched the record, snapped it in two, and threw it away. I don’t know that I ever reported this act to Dad, but it didn’t really matter. What mattered is on that night, a boy learned that his father valued their relationship more than his own pride, even when Dad was “in the right.”

I’ve found that experiencing this as a teen and replicating it as a father is not as natural as I had envisioned, especially given that this was not an isolated occurrence. My son takes identical approaches and defends “logical” strongholds. It can be so exasperating and our relationship has waned. I forget that being “right” doesn’t always justify my sternness. I have no excuse for not knowing better. I will try.

Doctor Visit

2008-08-01T12:37:00.001-07:00

Yesterday was my quarterly neurologist visit. She’s keeping me on my infusion therapy and it going to try two new drugs. One for my loosely tethered emotions and one to address walking/general coordination. The latter one is designed to help the nerves transmit better. Side effects? Just possible seizures. Yeah, I’m real excited about this one. The improvement better be dramatic and soon or else this one won’t last.

I stepped onto scale and was gratified that the digital read out said 166. Last time it was 161. Kara mentioned something about too much weight loss. My eyesight had betrayed me. It really said 156. Dang. I eat three times a day and often stuff myself. Well, not really but I eat until I’m too tired to eat more. How pathetic does that sound?

It doesn’t seem that long ago that I outweighed the rest of my family…combined! Now I don’t even outweigh my boy. I guess too skinny is better than too fat. For breakfast this morning I had a bagel, a tall glass of Ovaltine, AND a brownie. Pudgy Dave is going to make a comeback!

Lesson #13

2008-07-13T19:31:00.001-07:00

I was asked to teach High Priests Group today and my group leader asked that before beginning the lesson that I spend a few minutes teaching the brethren about MS, and how it has affected me. He really wants to improve our sense of brotherhood in the group, and last week Brother Sean endured a grilling on himself.

I was careful not to spend too much time on this because my words are limited AND we needed to get to the lesson. I provided a cursory overview of the disease and my current limitations. I took about five minutes to do this but there were a lot of questions, from disability insurance to how my family is affected. They were interested in what I do each day, and the topic of blogging came up. (A couple of brethren present have read them.) My bishop suggested that I continue to field questions and just put the lesson on my blog. It was a funny comment, but I know he was serious. It was a good idea, actually, as I can probably do the lesson better justice textually than verbally, especially since time was short. So here it is:

------------------

In the first section of the lesson there is an amazing story about how a prayer of one man, Newel K. Whitney, was answered. Joseph Smith traveled 250 miles on a sleigh from New York to Kirtland, Ohio and recognized Brother Whitney right off as he had seen him in vision, supplicating Heavenly Father. As remarkable as that story is, this lesson is not about prayer or prophets or miracles. The story was more about Joseph’s obedience to a prompting, even though it was terribly inconvenient and difficult. The paragraph following the Newel Whitney account reads:

By May almost 200 more Saints from New York had made their way to Kirtland—some by sleigh or wagon, but most by barge on the Erie Canal and then by steamboat or schooner across Lake Erie. In this move to Kirtland, as in the many other challenging circumstances of his life, Joseph Smith led the Saints in following God’s commandments, no matter how difficult the task.

Adherence to the principle of obedience has been, and continues to be, one of the most important characteristics of the Lord’s people.

Said Joseph, “The object with me is to obey and teach others to obey God in just what He tells us to do. It mattereth not whether the principle is popular or unpopular, I will always maintain a true principle, even if I stand alone in it.”

This is very wise counsel. We don't check ourselves against what any other man may or may not be doing. It is irrelevant.

----------------

This past week my son got his learner’s permit. Many of you have been through the singular experience of teaching a child to drive. I have, and with experience comes a little wisdom. After we were in the car, seat belts fastened and mirrors adjusted, I soberly said, “As you are driving, I may offer some suggestions like which lane to be in or even where to turn, but don’t do these things if it is unsafe at the time. You are responsible for the driving, and even though I say ‘Get in the right lane’ you are ultimately responsible. You can question the advice, or ignore it if it is unsafe. We can discuss it later.”I continued, “However, there is one word that if I say it, you must obey immediately with no questions asked.”

Any guesses what that word is?

I’m sure you know; it is “stop.” If I say that, there is no room for debate, analysis, or discussion. Anything short of immediate and total compliance could be disastrous.

As Latter-day Saints, we have received a lot of counsel from Heavenly Father through our priesthood leaders. Everything is important, but what would you consider to be the “stops?” The things that, if we ignore or rationalize or hesitate, even a little bit, can destroy us.

Hard Stops

Word of Wisdom violations
Any form of abuse
Any degree of pornography

These are the first three that came to mind. Anything else? I’m sure there are others, and I don’t mean to under-emphasize any other gospel precept. For example, I believe that inattention to personal prayers and scripture study will lead to our destruction, I am only trying to make the point that some counsel demands immediate and total compliance.

----------------

Joseph Smith said:

We have been chastened by the hand of God heretofore for not obeying His commands, although we never violated any human law, or transgressed any human precept; yet we have treated lightly His commands, and departed from His ordinances, and the Lord has chastened us sore, and we have felt His arm and kissed the rod; let us be wise in time to come and ever remember that ‘to obey is better than sacrifice, and to hearken than the fat of rams.’ [1 Samuel 15:22.]

What do you think that means? I’ve always struggled with this New Testament passage because I didn’t see sacrifice and obedience as mutually exclusive opposites. Shouldn’t e obey AND sacrifice? Isn’t our obedience sometimes a sacrifice? What does it mean?

I think that it has reference to the “new law” supplanting the old. Yielding our hearts and changing our actions trump any form of rote or manual show of piety. Is it better to learn to not covet, or to covet and then kill a goat to please God? More relevant to our day and circumstances, is it of more eternal value to us to overcome our pride or bid generously at the youth service auction? To truly cleave to our wives or to buy them flowers on our anniversary? In both these examples, both choices are good, but the latter without the former is somewhat hollow. Your thoughts? (This is where blog-a-lesson loses something)

Hum Bug

2008-07-11T23:16:00.001-07:00

I have really been working my throat this week. It is difficult to tell how much it is helping. I do know if I give it a good massage right before speaking, I seem to get a couple dozen decent syllables. If it seems strange to you that I write so much about my voice, you are not alone. I think it is strange too. Who would have ever imagined such a problem?

Anyway, Wednesday night as I was putting Natalie to bed, I had an idea. I would try out my newly revived skill of humming. I told her that I was going to hum a bedtime tune and I wanted to see if she could identify it. I know the humming is still pretty rough, so I tried Edelweiss, a tune that is very familiar to her. I had to focus, relax, and take a deep breath before I began. I did only the opening stanzas. It was pretty bad. She just stared, absolutely no idea. Maybe this wasn’t such a good idea.

Last night I tried it again, with Good Night Ladies. It was much more on tune and she identified it right off. Yea for us! Tonight she asked me to do another song. I tried Down in the Meadow and she is now 1-for-3. But it is OK. When I told her what I was trying to hum, she giggled as sweet memories enveloped her. Seriously, you could see her eyes light up with remembrance and when I left the room she was still singing the tune. I have a feeling this may become a tradition even if I never hum recognizably again; I can at least tell her what I was would have sung to her!

Raspy and Thin

2008-07-10T21:20:00.001-07:00

I am traveling to Phoenix with two of my daughters in a few weeks to see our 26 family members there. I haven’t seen any of them since Thanksgiving. They will probably notice that I have dropped about 20 pounds since then. They will notice that my voice is barely audible. I sound like The Godfather. I hope it doesn’t scare the kids.

I think it is interesting that neither of these things are direct symptoms of MS. The weight loss is due to a side-effect of my medication that suppresses appetite (I think it is really Dexatrim in disguise.) Also I am just eating better. The strained talking is mostly from compensating for some vocal weakness that is from the disease. But I walk about the same as I did last fall, and most days I feel less fatigued than back in November. There are a few other things that are markedly worse, but nothing too apparent (unless you get me laughing!)

I don't consider myself to be high maintenance or super fragile or anything so I hope that I am not a burden. I can't wait.

Giggles and Tears

2008-07-07T15:03:00.001-07:00

By doing the vocal drills I think my humming is getting stronger, but my talking is as bad as ever, both volume and pronunciation. On my way out the door to see the speech therapist this morning Kara said, “Tell her it isn’t working.”

At the visit I was discouraged that even the humming seemed very weak. Part of the problem is that I try too hard because I know she’s listening, which undermines the whole process. I KNOW this, but seem to be unable to do anything about it.

Little aside: One of the “minor symptoms” from my MS (that doesn’t get much press) is that my emotions seem to be very loosely tethered. When something strikes me as funny, even remotely, I start giggling and it is nearly impossible to stop at once, even if snickering is inappropriate. It can be a real problem, especially during speech therapy. I cannot speak AT ALL when I have the giggles. My therapist, Allison, knows about this problem, there is even a word for it. At least once per session, a drill or something sets me off. It is terrible. I have explained that my snickering is not correlated to internal joviality; she seems to understand. Today I had a run in with the other end of the emotional spectrum. Here’s what happened:

When I did so poorly on the drills, Allison went to get the other therapist for a second opinion/new ideas. This other woman had me talk as she fingered my throat, a lot. It was at least a minute, and although she wasn’t rough, I winced a few times. It kind of hurt. It is a very singular experience, but I kept focused on my job and held off the giggles. She said that the muscles in my larynx were so tight they were almost bound, especially on the right side. She said that it was reversible, but there is no pill, shot, or surgery. I just need to manually, slowly pull them down and keep on practicing. I asked how often. She said a little austerely “At least five times a day.” I told her I would do it every ten minutes if it would help. Blisters on my throat would be a small price to pay to get my voice back. It is quickly becoming my biggest medical problem, and it isn’t even MS! (It is related, but not a direct symptom.) She counseled against overdoing it.

After the 2^nd lady left, Allison handed me a little story to read as she worked my throat. I was to read it with a gentle tone but with as much vocal strength as I could muster. Simple, right? The immediate problem was that it is hard for me to read from paper. Dang. She had forgotten that I have vision problems too and apologized but I told her I could do it slowly. And so I began. Her hand was working my throat as I slowly read a children’s tale about rainbows and leprechauns. It was hard to make out the letters and harder yet to speak but it was audible. A few sentences in and I was struck at how pitiful the scene was. I’m not one for feeling sorry for myself, but at that moment I felt so pathetic: 90% mute AND half blind. I couldn’t go on. I choked out a hasty apology, buried my face in my hands and cried. Giggling isn’t the only free-roaming emotion. It only lasted a few seconds, and she understands that just as giggling doesn’t connote levity; tears are a tremendous exaggeration of sadness.

When it passed I tried again. It was hard to make out the words. Then it dawned on me that the story wasn’t important; it was just to give me words to say. Not only am I naturally gabby, I have lots of things committed to memory. I asked her if I could just recite something rather than read. She thought it was a great idea. I asked if I could do it in Spanish. She didn’t care what I was saying, as long as I was talking. I began to recite, in Spanish, D&C 121:33-46. My pronunciation was horrid but she didn’t know it. I did about six verses. Now that was a funny scene, but I didn’t think about it. I stayed giggle-free. (With hindsight I realize that I probably should have done The Articles of Faith, in English.)

Some Things are Better Left Unsaid. Some Aren't.

2008-07-05T11:35:00.001-07:00

Despite my diligence in speech therapy, it is still hard to talk and even harder to be heard. It has been interesting how many things I think but leave unsaid. Most of things that I don’t say, really didn’t need to be said. They weren’t crucial, or necessarily unique or funny or additive to the conversation. Even when my vocal abilities return, I should be more judicious about what I choose to say. I’m afraid that the old axiom that “God gave us two ears and one mouth for a reason” ironically fell on deaf ears with me because I was too busy talking!

But there are times when the challenge does make me a little sad. I’ve written many times about my love of singing Hymns and this continues to be a cost each Sunday. And today a friend called that I haven’t spoken with in several months. It was nice to hear from him, and I really wanted to talk to him about several things, but he could barely hear me despite my best efforts, so I had to truncate the call earlier than I would have liked.

I am glad that I still have my digital voice here!

Prayer of Faith

2008-07-05T10:40:00.001-07:00

Our priesthood lesson a couple weeks ago was on the role of faith in prayer. We talked about the role of personal effort that should accompany every request. We were hard-pressed to think of things that we pray for that over which we have absolutely no influence. I realized that effective prayer is an inward process. When we really think about it, it is a time to re-examine priorities, show humility by trying to align our priorities with the Father’s plan, and then asking for divine assistance to help us effectuate change. This is worlds different from a “wish list” prayer.

Consider the difference (some of which we discussed in class):

Wish list prayer:

Lead the missionaries to those who are prepared to receive the gospel
Bless the youth of the church
Help us to be kind to one another
Bless all those who are sick or afflicted

Prayer of Faith

Help me find and recognize opportunities to share the gospel with my co-workers/neighbors/friends
Bless me with wisdom as I teach my children
Please help me to check my selfishness so that I will be more kind to others.
Help inspire me to find ways to be of service and comfort to Sister Anderson.

Far be it from me to discredit common prayer phrases that are uttered in faith but I just realized that I could probably be a more active participant in my own prayer thought-process.

Therapy Notes

2008-06-23T19:46:00.001-07:00

Today I met with the speech therapist again. My humming is definitely getting stronger. In fact, in sacrament meeting I tried humming the bass line instead of just mouthing the words. I did so-so. My range was only F down to say A, so I couldn’t do all of it, and the notes I did were admittedly rough. Not singing for a year has definitely taken me from marginal to poor. I mean, I can hear it, and I can usually settle on the right pitch, but it is certainly not effortless to get there.

Anyway, the therapist continues to remain optimistic. I asked her how many times per day I should be doing the drills. She said “At least twice.” I do them just about once every waking hour. Was that too much? No, the more the better. I told her about this strange inner ear pressure problem that I started having a week ago. It just feels like your ear needs to pop, and it happens every day and lasts for about 20 minutes. I said, “I’m just all messed up in there.” She said, “Your voice is not as ‘messed up’ as you think it is.” I found that as encouraging as it was funny. Do you think she can tell I’m a bit stressed over all of this? Unfortunately, the anxiety is counter-productive.

I learned some more practice techniques. She did tell me that I shouldn’t refrain from normal speech to relax the throat muscles. Instead, I am to try to learn how to speak minimizing their interference. Although I speak two languages, I only know one way to talk, so this is extremely challenging.

Primary Care Givers (in the Compassion series)

2008-06-21T13:56:00.001-07:00

The place where I receive my infusions accommodates two patients. We sit in comfortable leather recliners and watch movies on TV while the medication is slowly pumped into our veins. My infusion-buddy the first time was an older woman. I don’t know how long she has fought MS, but it clearly has taken a greater toll on her than it has on me. She was so frail and had a hard time getting comfortable. Her voice was weak (but not as strained as mine!) I noticed something else, someone else actually, that led me to this insight. It was her husband. Seeing him and visiting with him it was evident that he was his wife’s primary care giver. He carefully helped her to the chair, answered all the nurse’s questions that he could, and although he did chat with me, I could tell that his first and overarching priority was her.

Who are these primary care givers? (PCGs for short.) Often it is a spouse but can also be a parent, child, or a dear friend. I have never been a PCG for anything protracted, but as I’ve taken notice and thought a lot about this, I have realized some things. For starters, rarely does a PCG choose that role. Who would? In most cases, they are thrust into it with little preparation and high expectations.

My wife admits straight up that she does not like the role. She has commented, “I’m no Florence Nightingale” and just feels inadequate as a comforter. But that doesn’t matter. For me, she’s it, comfortable or not. She says she is not naturally compassionate, but I know that to be untrue as I have witnessed her show deep compassion for our children every day, for other children and teenagers. Also, her compassion was unmatched for her sister who was grieving the loss of a child several years ago. For her, these are more natural venues for her charity than her husband who has generally been pretty self-reliant all our married life.

In case there are any doubts, I can physically care for myself, with the exception of occasional help with a cuff button. Worrier that I am though, I’ve thought about the possibility that some day this disease, or some other ailment, may render me unable to care for myself. I know that day may never come, but I dread it mostly for Kara’s sake. Once I mentioned to her my fear that someday I may become a physical burden to her. She said, “Oh, not to worry. We’ll hire someone!” It was said tongue-in-cheek, and maybe this will be an option for us, but though we hire 100 home health workers, her role as PCG cannot be hired out nor delegated.

Another thought: Although the PCG is yoked with this incredible burden, because of the illness/injury, 99% of concern and sympathy is for the afflicted. Often the PCGs can feel overwhelmed and alone. Who steadies the hard of the care giver? Who comforts the comforter?