Sunday, 17 May 2015

I Hate This Disease, Again, And Again, And Again, And Again

I hate this disease.

It is enough to draw me to the keyboard in the middle of the night. It is enough to awaken me from sleep, to draw me from drunken exhaustion, enough to drag me out of beaten, rugged, sleep. It is enough to force me to ask the damning question. How can this be?

I spent this evening with a wonderful family, with an amazing, vibrant child; with a loving, charming, intelligent husband, with a compassionate, caring wife. I spent this evening with a family, whose youngest member talked about the limitations of Mommy, how she could not stand, how her arms were weak. I spent this evening with a husband, with a father, who bravely and honestly faced a future so limited with the woman he loved. I spent this evening with a family ravaged by ALS.

It just doesn't seem right. How is it that someone so young could be forced to contend with the realities of this illness? I don't mean the daughter; she, on her own, faces this reality without any sense of anything which might be different. I mean the young mother, the beautiful woman who is and once was. How is it that she, of all, in that most unfair of most things, must face the relentless onslaught of this cruel and unusual punishment? I mean the loving husband, so perfect in his care, so unending in his compassion, facing the harsh certainty that the woman he loved, the mother of his child, will leave her all too soon.

This is the true cruelty of ALS. It takes us all too soon. It forces us, each and every one, to stare in the face of death. It demands, even from a small child, that we acknowledge the incremental failure of our physical self. ALS is cruelty incarnate, a bully that knows nothing other than unkindness.

I hate this fucking disease, I hate how it takes. I hate how it steals. I hate how it demands, destroys, diminishes, debilitates. I hate that it take such beauty, such love, such incredible wonder, and then trashes it on the ground like so much waste, as if it were nothing more than a garbage bag from a fast food joint, nothing more than detritus, nothing more than litter at the roadside.

I met wonderful today. I met amazing today. I met so much today, so much that will be gone, taken with this fucking, awful, nasty, terrible, horrible, vicious, ugly, cruel disease. I met a wonder and she will be taken from us, taken by ALS.

There has to be an answer. There must be an answer. It's got to be out there. Please God, tell me there is, or will be, a cure of ALS; not for me, but for the child that faces her Mommy and says "She can't walk; she can't stand; she needs help when she eats." Please tell me there is something for that little girl. We need a cure for this God damned, terrible, fucking awful disease. Please.


  1. Thanks for this post, Richard! We will keep our heads up; no one knows what the future holds, not even those of us with ALS. We had a lovely time with you--so glad we got to meet. Hope you're enjoying the foggy day.

  2. The feelings, the frustration, feriousity and even the fear come through this writing, Richard. The futility of this fuckin disease, as it robs,steals, and eventually kills.
    My heart breaks for your family and friends that have to live through this agony. ALS should go to the pit of hell where it belongs!

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  4. Thank you for being so honest...and so open with us! My ALS is progressing, and I'm saddened by the losses I'm handling now and the bigger losses I'm facing in my near future. But, at least my sons are grown. For that I give thanks!