Thursday, December 16, 2004


I had my blood drawn for tests yesterday morning. My lovely wife is going to come with me today to meet my local neurologist, the cool guy, because although I have praised him so much, she has never met him in person. I'll bring the films from the MRI. The doc and I have exchanged friendly informal emails and we are planning to have him and his girlfriend over to our house socially at some point.

Yesterday I watched a video about a guy who died of ALS. My left thumb has been twitching for several days now. With the infringement on my speech that I noted in the recent post, but also just with a vague general sense that I get of my symptoms progressing, I have been more acutely conscious of my own near mortality. As I plateau out, I may get a sense of durability again. But as of now I feel like I am going to decline and die rather rapidly. It's just a feeling, I know, but that's the feeling. I hate the decline part more than the part about being dead. The humorless, cruel progression. And now we'll take a little bit of this, and tomorrow a little bit of that... Don't worry brainhell, we'll have you in a wheelchair in no time, and on the ventilator.

Well wrong. Because at this point in time I'm going to make up a written scenario list for my wife to follow, and if she has to make the decision on whether to put me on a ventilator or let me die, the list will say no vent. That may change over time, but I know from my reading that I am not alone among ALS patients in making that decision. The majority of them say no to it.

I woke up this morning thinking about how I and my buddy from work used to run in the hills. The golden grass, the dry powdered dirt of the trail. The hot sun, the cool air. Wild oak. We ran like horses, we ran like dogs, like deer. Sure it was work, and sometimes your body slowed down, but you could always count on it to reassert itself and carry you. Our legs were strong. Our lungs and backs were strong. And not one of you damned people reading this blog could have kept up with us. None of you! And now he can still run and I can't. He's getting stronger all the time. It's not that I'm not worthy. It's not that I didn't work hard enough. It's not that I don't enjoy it. It's because something has been stolen from me. Stolen. I'm only 41. The losses of old age I could handle. But I am so damned healthy, and this ALS is pure crap. I used to run like a dog in the hills and now this has been stolen from me and I am so pissed off. So pissed off and I couldn't see the keys on the keyboard during most of this.

One time when we went for a run, we brought our cameras. I took over 100 photos of those hills from that run. Back then it was just a lark, but I am so glad now that I took those shots. I grieve for those runs, and the photos help me with that. One of them is shown in the photo included in this post.

Just one steady reliable footfall after another. Like riding a horse. If you're not a runner you may not know what that means. I miss it so much. I want to run. I want my legs to carry me. Like machines. Like the machines they were.
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