Wednesday, September 21, 2005

Journal: What if my sclerosis was amyotrophic lateral instead of multiple, or What happened to my letter to Darcy Wakefield?

The other day on NPR, I heard a commentary written by a woman named Darcy Wakefield. A couple years ago, when she was 33 (about my age), she developed ALS (a.k.a. Lou Gehrig's disease). At the time, Darcy Wakefield was an English professor, an avid runner, and, it seems, just an all-around dynamic person. The piece on NPR was about loss: how she's lost the ability to turn herself over in bed and how terrifying this is, how it feels to confront the accumulating losses (oxymoron?) the disease has dealt her, how she longs for an escape from those losses. The piece was read by her sister, suggesting she's also losing or has lost her ability to speak.

After I heard the piece, I starting thinking about what Darcy and I have in common, and what's different about us. For me, MS has also been a story about loss: slowly losing some physical abilities, and then, as a consequence, losing activities and experiences, losing relationships, losing confidence and other bits of my identity. But while ALS deals out many of the same neurological damage that MS does, it's a very different animal. ALS viciously attacks only the motor neurons, leaving the patient paralyzed, but leaves the patient's mind intact. Eventually, patients can't breathe on their own. The average life expectancy of an ALS patient is two to five years. (Get the basics from the ALS Association here).

In her commentary, Darcy remarks on how 'slowly' her losses have unfolded, how they were almost unnoticable while they developed. But to me, a two-year progression like Darcy's seems unmercifully quick-- whatever disabilities I've got have taken 13 years to accumulate.

After hearing her story, I wanted to write to Darcy, to tell her about my experience, to ask her to tell me more about her life. God help me, I started writing and got a couple paragraphs down before I realized what a stupid idea it was. Here's why its a stupid idea.

For one thing, Darcy's published a collection of essays about her experiences so for called I Remember Running: The Year I Got Everything I Ever Wanted-and ALS. No need to bug her. But the other reason is more complicated.

I have a tendency to see people living through awful things as a potential source of insights that are unavailable elsewhere. I suspect I'm not unique here. I first became painfully aware of this tendency in myself a couple years ago when a good friend was diagnosed with really aggressive lymphoma. It had spread around her heart, or something like that. It was really grim. She decided to go back to her home town for her treatment. After chemo failed, she decided to undergo two consecutive autologous stem cell transplants. Shortly before the transplants were to start, she and her affable boyfriend paid a surprise visit for a weekend.

She was really skinny, with a couple inches of hair starting to grow back. She looked tough, and, I thought, wise. She's a scientist, and she tended to talk about her illness in what seemed like a detached way; cell counts and timetables and structure and process. We visited some favorite places, and over dinner, I tried to get her to talk about her illness in something less than medical terms, without success. In subtle and not-so-subtle ways, she'd change the subject, turn a question around; she didn't want to go there.

The weekend ended quickly, and when she and her boyfriend drove away, I thought to myself: I'm worried about her, she's not emotionally processing what's happening. Later, though, when talking about the visit with my wife, I started to think, well, um, maybe she's processing just fine. Maybe she's doing all kinds of work inside and she's just got her game face on. Maybe you're a jerk for expecting that she would at some point light up and spout some mystical wisdom for the benefit of those who were not sick, that they might live more meaningful lives. Maybe you're really just hoping she'll offer something to help your own damn processing, which has been going on for 13 years and has not transformed you into some kind of incontinent Buddha figure the way you thought it might.

So I'm not going to try to be Darcy Wakefield's pen pal. I'm going to read her book, and do some more of my own processing. It's going okay, actually.

Link to NPR site with audio clip of Darcy's sister reading Darcy's commentary.
And by the way, how hard would that be, to be Darcy's sister, to give voice to Darcy's words?

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