Saturday, July 31, 2004

Experience ALS

Now, you all might be forgiven for thinking that I have had no symptom progression at all in the six months since my diagnosis, but in fact my left hand has become harder to control. Come back in the room, ladies, that's not what I meant. Point your finger. Make a peace sign. My left hand does that real slow, and the fingers stay partly curled. Basically what is happening is that some of the nerves have died off and the remaining few have the duty of telling all the digits what to do. Also, it seems like when those few try to send signals that require one digit to do one thing while another does something else, things get mixed up, and the motion that occurs obeys the average of the two signals.

A similar thing afflicts my left leg, which just doesn't rise up high enough when I put my pants on while standing. But that's been the same for six months, as far as I can tell. My jogging has gotten more stiff on the left side, as I mentioned a while back, but I haven't been running much at all lately. So I'll let you know.

But! I came up for a way for you to experience ALS, at least insofar as I now experience it. On the radio the other week I heard someone talk about how his mother experienced a "tortuous death" from Lou Gehrig's disease. I don't get that, and I hope it will be a long time before I ever do. Or that it be an experience I am deprived of. By the Starship Enterprise diving towards the sun to travel back in time and deliver me the cure. Why? Why, because I am a direct ancestor of Captain Kirk.

Here's what you do to understand what ALS is like for me:

Perplexing limb insubordination:
1. Turn your head all the way to the side, as far as it will go. Now turn it farther, so that you are looking directly backwards. That's the response I get when I try to move my fingers in certain ways, or move my leg really fast.

Here's another way to do the same thing: extend your arm so that your elbow joint has no flex left. Now try to bend your arm backward at the elbow. You're sending the signal, what's happening?

2. Curl your thumb down toward your wrist. No, not with your other hand! By itself! Now try harder ... harder ... until the thumb muscle cramps. Do it like that for an hour if you have to, until you feel like the muscle cells are just going to pop into little puddles of goo. That's what it feels like when I wake up and stretch while yawning. In fact, I have had to learn a new way of stretching: Instead of curling, as I tend to do, I extend the limbs. That way the cramps are usually avoided.

I went looking for other ALS blogs today. There aren't any (that I have found). But there are mentions of the condition. You get a sense of how lucky I am when you read the April 16, 2003 entry from someone's blog:

"It seemed unreal when they found out their father, only 57 years old, had Amyotrophic Lateral Sclerosis--otherwise known as Lou Gehrig's disease. From the time he was diagnosed 8 months ago until now, he has gone from a hard-working man to a bed-ridden invalid who cannot walk, eat, or urinate on his own. He is rapidly losing his ability to speak; he told his family about a month ago that if they wanted to ask him anything, they should do it now."

I think we know what has happened to their father in the intervening 15 months.

How can I go around feeling lucky that I am surviving so long and so well with ALS? Does that mean gloating that other people must suffer while I don't? Sometimes I have brief flashes of what you might call survivor guilt. I catch myself thinking that it would be more convincing if I were to limp, or thinking that there may be a sudden simultaneous malfunction of many parts of my body, that it would affirm the credibility of my diagnosis, and the anticipation and faith all my friends have in me dying. See? I would say, I really do have it!

But fortunately those notions are only flashes, and I surpress them with great prejudice. I believe in the power of visualization, and I don't intend to visualize for one second that I die. I think that the father mentioned in the other blog wouldn't want me to, either.
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