Saturday, January 22, 2005


The point of this article on Olney, the director of the UCSF ALS clinic who has recently been diagnosed with the disease, is to point out how noble he is for participating in a placebo study he designed.

But the parts that strike me are these:

In any case, it appears that Olney will not be among the long-time survivors, according to Lomen-Hoerth. She said he probably has only a matter of months to live.


Olney said his case appears to be on the fast-moving end of the spectrum, characterizing it as more rapid than average, albeit not the most rapid case he has seen.

When I look at my own case, and consider that I was diagnosed over a year ago, and through all that time could still walk and talk and use my hands and work on the house and play with my kids, I think what an astounding blessing it has been. Not that I can expect to progress slowly and live long, because recent events and the clumsiness of my own tongue belie that, but rather, that I had that magical year at all. And it fills me with an anger, an angry insistence that whatever functionality I yet have left in me must not be squandered or taken for granted.

Each day is precious. Those of you who do not have ALS, but who are instead fated to be run down by buses and ambulances and Oscar Meyer weiner-mobiles, accept intellectually that every day is precious. But those of us with ALS feel it, or ought to feel it, every minute.

I dug out three dandelions from the lawn yesterday. I put up a curtain rod. I played with my kids.

This week I met two people through this blog who have ALS. They are the first two, ever. There is a Yahoo group, and there are other forums, including local meetings, where people with ALS can be met. But meeting folks with ALS through the blog is valuable to me, because I assume (perhaps wrongly) that they do not find my sarcasm and irreverence offensive. There are a lot of very sincere, but very innocent, people out there with ALS, and I feel separated from them because I am such a weirdo, and many of them are not.
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