The Theory of Relativity

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

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

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

Silence is Golden

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

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

Exquisite

Warning: long entry ahead and reader discretion is advised.

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

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

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

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

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

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

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

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

Health Update

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

Maybe next time I’ll bring graphs.

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

I'm not the only one who's changed

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

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

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

Nurturing

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

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

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

• Loving
• Teaching
• Protecting
• Helping
• Supporting
• Encouraging

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

4 4/7 + (-3/2)

What would you say to that?

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

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

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

Guardian Angel

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

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

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

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

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