Bonk

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dave’s Simple 3-Step Diet

1. Get MS
2. 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.
3. 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

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

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!

More Complete Answer #2

This evening my sister-in-law asked a good question, and I didn’t give a very complete answer. Today is the second day of my Arizona trip. Everyone has been so kind to me and sensitive to my condition/limitations. This evening as we were walking from car to restaurant, we had to step over a log. Rachel was near me and asked if I needed any help stepping over it. I did not. She then asked if I ever get tired of people asking me questions like that.

Good question. In truth I don’t mind at all, and I know these concerns are born of pure charity. I understand that my problems are not only difficult to describe, most of them are not visible. So how are others supposed to know my specific limitations? They can’t. I’m not even always sure. Family here is definitely assuming the worst to insure against possible insensitivity. I appreciate that, and am humbled by it.

But I do wish that I could hide my MS so they wouldn’t fuss so much. I am not comfortable in the role of “the disabled uncle” or “the pitiful one” even though I kind of am. I don’t relish the extra attention, but I kind of need it. I just want to be “David” not “poor David.” I try to say and do things to mitigate concern, but despite my best efforts to be “normal” I can’t hide some things. I am not too nimble on my feet and, no pun intended, but my “godfather voice” shouts “something is really wrong here.”

So, am I bothered by the special concern others show me? No. Do I wish I didn’t need it? An emphatic yes. Does it matter how I feel abut it? No, not really. It is what it is and I’m fortunate to be encircled by so many caring people.

More Complete Answer

I wrote in the last post that I fielded a lot of questions about my health condition during priesthood Sunday. I was not able to give a complete answer then for various reasons, so I’ll try to answer it here:

Question: With all these limitations and challenges, how do you stay so positive?

Answer: I’m not always positive. I get down, no question. My nervous system is compromised, and although there are “good” stretches and “bad” stretches, compared to pre-illness they are all bad. The constancy is discouraging.

So how do I stay as positive as I am? I mentioned Sunday that despite my challenge, my “blessings-to-trials” ratio is still obscenely high. Of course I count among my choicest blessings my wife and children, but also my priesthood and my testimony have been tremendous blessings. On top of that are the many service, educational, and professional opportunities I have enjoyed.

Also, of significance is my extended family. We all love our parents, but I consider mine to be legendary. As part of their legacy they have given me five remarkable brothers and four loving, talented, and beautiful sisters. And add to that their eight spouses (so far) and 33 nieces and nephews (just on my side of the family). And it isn’t the eye-popping quantities in which I feel blessed. I enjoy being with every single one of them. Who has that? Seriously, putting the kids aside, I have nine siblings and I get along well with every one of them. Additionally, I consider each of the men my sisters married to be a dear friend. (I’ve known two of them since we were teens.) And all four of my brothers’ wives are an inspiration to me. Who is encircled by so many wonderful and caring people? I’m not trying to brag, everyone has their own unique blessings, but just the thought of this blessing quickly dissipates discouragement. I have learned that gratitude and self-pity cannot coexist, and that the latter leads to no where good.

Further, there is something about loss that makes us more grateful for what we have. Because I cannot run, I am tremendously grateful that I can walk! Does that make sense? Like everyone, I love my children dearly, and I didn’t think my heart could be any more tender towards them but then three years ago one of my young nieces was suddenly and tragically taken from us. The loss made me acutely more grateful that my children are safe and well. I don’t mean to trivialize that loss by comparing it to my functional losses, but in both cases my heart seems to have become more sensitive and caring.

Lastly, I understand the plan of salvation, or plan of happiness. Life (and health) on Earth is transient. I believe that Christ's victory over the grave extends to victory over declining health. But isn’t it a bummer that I got this disease at such a young age? Well, most people with MS are diagnosed between the ages of 20-40 so in that regard I was one of the fortunate ones. Also, thousands and thousands of people have suffered from far worse at younger ages.

But isn’t it hard? Absolutely. I hate it. But does that matter? No, not at all. What does matter is my attitude, and that is something I can control. I cannot guarantee that I will always be positive, but today I feel grateful for all that I have.

Lesson #13

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:

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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.

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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.

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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

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

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

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.

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

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:

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

Prayer of Faith

1. Help me find and recognize opportunities to share the gospel with my co-workers/neighbors/friends
2. Bless me with wisdom as I teach my children
3. Please help me to check my selfishness so that I will be more kind to others.
4. 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

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)

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?

Perspective

Over the past couple of years, I have learned that in the waiting room of a neurologist’s office, you will see other patients with a wide range of neuromuscular difficulties. In some people, like me, it is not readily apparent that there is anything wrong. In others, it is pretty obvious.

Yesterday as I was waiting for my infusion appointment an older couple entered. They were probably 20+ years my senior, and the man used a walker. His progress was slow, but he was doing it. When he neared his chair, he needed to move about a foot to the left. This sideways movement was laboriously slow. But he finally made it and sat down. I don’t know that he suffers from MS, nor do I know if I will ever be in that position, but I did feel sorry for him and grateful for my mobility.

A few minutes later another elderly couple entered, but this time the gentleman was in a wheelchair. Again, I don’t know what caused his disability, nor can I know if my fate will be similar, but I found it interesting to notice “walker guy” watching “wheelchair guy” and wondered if he was thinking the same thing as I was a few minutes earlier.

Teaching

I was looking at some stock quotes online yesterday morning when my Natalie (9) asked me what I was doing. I fielded an identical question from Amanda ten years ago when she was 7  I tried to explain the basics to Natalie but failed miserably. I know it is not important that she understand equity markets, especially at age 9, but my talk with her sister years ago ended up with Amanda buying a few shares of Disney stock. Yesterday’s discussion was brief and ended with Natalie throwing her hands in the air and saying, “I don’t get it.” I used to be able to teach my kids, but now my voice gets so strained I can’t talk. The number one reason I would want my voice back is for communicating with my children. It is very frustrating.

As I thought about this, my mind drifted back to a day maybe five years ago. My son and I used to enjoy working together in the yard, but at about age 10 other interests began to eclipse Father-Son time. I thought about how great it would have been to be a farmer a century or two ago. I’m not talking about having to butcher livestock or have a life span of 50, but just considering how awesome it would be to be able to spend so much time working alongside your boy. Oh, the things you could teach him!

Then it hit me. Although I can’t speak too well now, I can write. Now that school is out I basically have all day every day to teach my kids! I don’t mean to brag, but who gets to do that? Of course I have other things to do like my treatments and my therapy, and trying to figure out a way to make some money despite my limitations, but could I not spend a couple of hours writing each day for them? Keyboarding is not an inexhaustible resource these days, but still, I can write enough. I envision each of them spending 20 or 30 minutes with me every other day or so, having then read aloud the lessons customized specifically for them.

Monday I spent about an hour writing a story to explain capital markets to my nine-year-old. It has 11 very short chapters of about 100 words each. And there are pictures. It was challenging, but fun. Yesterday afternoon she read aloud to me the first four chapters. I’m not certain that it is sinking in, but it can’t be hurting. I also spent some time thinking of topics that I could write about to benefit the older kids. Some are religious, some secular, but all should be useful. My first wave of ideas included topics ranging from The Plan of Salvation to automating spreadsheets to Spanish grammar. Maybe I could teach Erika how to read music or I could share my thoughts on a university “General Ed” with Amanda. I could teach Natalie the rules of tennis and perhaps share a family history story with Ryan. (And I could sneak some love letters in there.)

Now, I am not yet at this parent-child mentoring Utopia. They might really resist it. Also, the list of things that I know well enough to teach is pretty short right now. I’m hopeful that once I get going more things will come to mind. Maybe some of these little lessons will be “blog appropriate” but I imagine that most of them will just be rather child-specific insights. We’ll see.

Waiting for Wistful

Like all kids, I periodically got sick. I was perhaps a bit more prone to bronchial illness than some kids, but I was generally pretty healthy. I didn’t like being sick and I didn’t “fake” it to miss school, but notwithstanding the physical discomfort there was a peculiar euphoria in the morning when it was clear that I was staying home. The whole day stretched ahead of me – baseball cards, Mom caring for me, a lot of cereal, and morning TV (The Price is Right). The mornings were nice, but the afternoons were depressing as my brothers returned from school and played outside. The reality of the sickness hit me. The evenings were nice though, especially bedtime. My parents would set up the Vick’s Vaporizer in our room and it emitted that steamy Vick’s smell. To me, that was the smell of parental concern and looking back it seemed to envelop me.

One night following a pair of sick days, I felt much better and planned to return to school the following day, I remember feeling a twinge of wistfulness that this turn of the Vaporizer and watching a.m. game shows was behind me. I mean, I was glad to be well, I just realized that I would miss the little bright spots.

I can’t help but wonder how I would feel if I got well enough to return to work now, ending this extended holiday. I don’t watch daytime TV, and I don’t have a Vaporizer, but surely the bright spots have been dear to me, and I would miss them. (I hope to find out some day!) For the record, just because I try to see the silver lining in this trial, does not mean that I like it. I would be thrilled to have it lifted and to return to work and my “normal” life, even though I would just be normal Dave and disqualify myself as a good “Sunday School comment.”

(Although I know that even if every neuron were completely restored that I will never be the same again. I mean that in a good way.)

Hurdles

In January I applied for Federal Disability. Any payments that I would get would lower my other disability payments dollar-for-dollar, but still, there are advantages to being on this program. Namely, your earnings are “frozen” for social security benefits determination and after two years you become eligible for Medicare.

I had heard hat they deny everyone’s first request. (Maybe there is a job for me, I could do that!) So I wasn’t terribly surprised when I got that letter three months letter. In April I was contacted by another company that my disability insurance carrier hires to appeal disability claims. This past week I got my second denial. The appealing company dude called to tell me that this is protocol, and that the next step is to request an in-person hearing. He said that this is usually where the claims are granted but that it will likely take 12 to 18 months to even get a hearing date. A year? At least? (By the way COBRA benefits only last 18 months.)

I figure that these denial hurdles and protracted hearing dates are for fraud prevention and stuff, but still, it seems a little silly. They say they “carefully reviewed” my medical records. What we’re they looking for that they didn’t find? My sense of smell seems unaffected? Maybe that is it.

I'm not an "entitlements" kind of guy, but I do know that for 15 years I paid a lot into the program, and that I am truly disabled from my job, any just about every job I can think of.  I'll keep you posted; but don't hold your breath!