Tuesday, May 16, 2006

I'd be a wreck

A reader emailed me:

...I just went back and read your transcript of the diagnosis, and it struck me that the appointment was January 2004 and it is now May 2006. That would mean you've had a diagnosis of ALS for a little over two years, and if you were correct in your assertation that day that most ALS patients don't survive more than four years post-diagnosis, that means you have approximately less than two years to live.

And I can't help but think, if I were in your shoes, facing that kind of future, I'd be a wreck. Do you think about the future much, or do you focus on the day-to-day things to keep yourself sane? How do you handle mourning the loss of your future?

(I'm only comfortable asking you about this because you are so forthright in your blog, and you seem to be very OK with answering questions like this, but please, do NOT respond if you feel uncomfortable or if I'm asking too much from you.)

I think of you often, knowing there are so many more people like you out in the world that I don't have any way of knowing, but I am so glad to have "met" you and that you have chosen to share your story with the Internet. I do, honestly, believe that I will continue to think of you every so often, probably for the rest of my life, and think about your family and your children, and hope that they are well.

I have made a small donation to ALSA (alsa.org) in your honor, even though I do not know your name. I just wanted you to know that you inspire me.

I think I've got more than two years in me, maybe way more. We Shall See. I don't mourn the loss of my future. I see the future as my friend. I see the possibility of getting "locked in" -- or dying -- and leaving my children fatherless as horrifying -- but hypothetical. We Shall See. Thanks for thinking of me, and for making that donation. I appreciate that I inspire you, but just imagine that I'd never gotten sick, and was instead crassly commuting to work every day. How inspirational is that guy?
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