Final Post

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

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

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

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

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

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

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

Avoiding Misery

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

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

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

Out of the mouths of babes

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

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

Answers to Questions

Answers to questions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What if

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

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

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

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

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

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

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

Dreaming

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

Megabite

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

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

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

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