“It’s not the dying part. It’s all the stuff before that, and what will happen to my body.”
- Amyotrophic lateral sclerosis, or ALS. A progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
- Onset is insidious
- 100% fatal
- Usually strikes between the ages of 40 -> 60 yrs
- Anyone can get it
- As many as 30,000 in the U.S. have ALS at any given time
- 5,600 are diagnosed each year
- Incidence is 2 persons per 100,000
- Life expectancy, 2 to 5 years from diagnosis
- 90% die from respiratory failure
The day we left for Mississippi, David received his formal diagnosis. Once we were back, we too learned of the news. I had the chance to speak with David’s sister yesterday. I was on my run, and like I’ve been doing lately, thinking of David. I thought, if I see his sister, I’m stopping and speaking with her. I ran past her house in the subdivision where I’ve run many times and rarely see anyone out. I saw no one on my way in. I ran the half mile loop and as I ran by her house again, my wish was granted. I couldn’t believe it when I saw her coming out her front door. I stopped.
We talked for about 20 minutes and I learned so much. That he is trying to manage his life as normally as possible – within the realm of whatever his “new normal” is going to be. That he is in good spirits, dealing with it in his own David like way. That he wants to try and get back into working out, for as long as he can. That he’s gained back 8 lbs of the 15 he’d lost. That he will go to Duke for care. That his parents – both in their eighties – have yet to fully grasp what he has and that it’s fatal. That he wants to hang on long enough, for them. All of that, and more, made me tear up, brought a lump that sits in my throat even today, and won’t go away.
My friend. Our friend…, is dying. Not immediately. Not tomorrow. Not next week and hopefully, prayerfully, not for a few years. Still…, too soon, though. It is too soon.
My runs are forever changed. My mind turns inward, seeking to retrieve the memories, tucked away, something to hang on to. Ten miles we used to run, EVERY Saturday. TEN MILES. My husband and I are sad faced, sad hearted, prone to staring blankly, while the world before us carries on.
But…, what about David?
So what that we are sad, clinging to our thoughts, worrying about the what if’s of our own health. BIG FUCKING DEAL. What about him?? What is he thinking when his eyes open in the morning? About what he will have to face? What will it be like for him? What about his wife? His company? His children, who have yet to graduate college, yet to marry, yet to have kids, his grandchildren he will never see? I mean, seriously, what is he thinking, and how does he really feel?
He wouldn’t tell, even if we asked. All of our earnest sincerity and goodwill would be met with a bland look, and then he’d probably answer our question with one of his own, “Hey, you doing okay?”
This is all very premature, I realize. Who can say? He could beat the odds. Look at Stephen Hawking. That’s what we can hope for, that he will be in that % of diagnosed patients who beat the odds. That he won’t fall into the “generally speaking” statistics , but will burn his own course around the experts carefully woven pathways of data.
Beating the odds sounds like a for real David sort of move anyway.
That’s what we will hope and pray for, beating the odds. Period.
- Thousands Walk to Defeat ALS (phl17.com)
- Keshe Foundation Releases its First Medical Video and Paper for ALS (lightworker29501.com)