Creative License

I never heard a thing. I never had a chance. I planted my boot in the soggy ground and drove forward with an energy new to me, pushing to escape, but through my hope coursed a river of despair as the razor rice, thrown by an enemy to a wedding, ripped through my sleeves, my trousers, not stopping at flesh, not stopping at bone. My flak jacket, though shredded, held back the onslaught, my head, bowed low with my thrust to escape, was spared the fatal rain. There was no pain, only intrusion. Arms, legs quivering, my balance compromised, my once seemingly limitless energy seeping from my limbs as the blood flowed from a million tattered wounds. Though I couldn't see it, I pictured my green fatigues gone crimson, gone to rags, gone to scraps and remnants of their former selves. I knew in that instant, the fraction of a second from realization to reality that my life was changed forever. I went down, boneless, to the wet ground, to darkness.

They told me it had been weeks. To me, time had no relevance. I looked out on a hospital room, sterile and unimportant. I remembered everything, nothing. I felt everything, nothing. I sensed that things were bad but I couldn't place the problem. I couldn't turn my head. I felt pain, dull, throbbing aches at my shoulders and at my hips. I'm in a chair, I guess. Someone behind me, talking to the back of my head. I caught few words, more a tone than a statement, more a sympathetic gesture. Something about preparing myself, about how lucky I was, about the others, the not so lucky ones. Then he wheeled me toward a wall. I could see a large mirror, dirty yet serviceable, mounted near a hallway. Some guy was checking out his hair, quickly backing away when he saw us. I never laid eyes on that guy again.
I don't know what I expected, but I got more (and less) than I bargained for. It wasn't me, and then again it was. Same face, same..............................face. All the rest was gone.
That damned flak jacket. It did it's job. Too bad.
All in an instant. All in an instant.

Sometimes I feel like this guy. Sometimes I envy him. ALS plays out as a timeless disease. Any trauma renders its victim instantly. One day you have the use of your limbs, the next day you don't. ALS draws from its victims minutely for days, weeks, months, hopefully (crazy thought) for years. A little takeaway every day. Time enough to assess your situation, adjust to your limitations and wait for the next adjustment, and the next, and the next...........
As impossibly difficult as this is for me, I do believe it's worse for my family and friends. I am sure that the worry, the fear and the sadness in them will be compounded by the progress of the disease as the level of care giving increases. I may get better, but measures must be taken to accommodate the worst case scenario. Medicare is not exactly a well oiled machine. Planning ahead is essential, and depressing. Once I schedule to receive a power chair, I can expect to wait up to 30 weeks for delivery. Everything takes forever. I don't have forever.
Besides the obvious symptoms, my core strength is weakening, like an eaten apple perched on a trash can lid in mid summer. I need to slow down and be careful when I walk. Soon, I may slow to a stop, and when that happens I sit my ass down. Forever. I will push that thought as far away as I can, but it still lingers, no matter where it lies. I must be especially careful on stairs. Concrete steps scare me the most. I sometimes travel down stairs backwards, so as to fall "up" rather than to the bottom. I've installed literally hundreds of handrails, never really considering the importance of such, but now, I rely on them to help support my increasing girth, and I hope all those railings I put up survive their purpose.
ALS is an insidious disease. It travels through the body with stealth and breaks it down cell by cell. I search continuously for correction. Within, without. So far, nobody has an answer. Maybe everybody has. Maybe ALS will make a mistake and bite its own ass. One can only hope.