The Theory of Relativity

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

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

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:

1. 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?)
2. If there is something to be learned, I’d better learn it well because I never want to experience that much pain again.
3. 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

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

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

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.

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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

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

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

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

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

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

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.
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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 there 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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...

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

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

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

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

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

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

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?

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.

A New Calling

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.)