Way back when.....................(redux)

 I know this is probably cheating, but I wanted to re-post this writing to see if there were any significant changes in my attitude over the months- by your view. When this was written I had very few symptoms, and now- well, you know the answer. Many probably haven't read this. Anyway, I present the past.

I was diagnosed with ALS March 15, 2011. The next day, I took a painful EMG stab test (more on that later) over a 7 hour period and gained ( not in a positive way) confirmation of my diagnosis. On March 17, I put to paper my initial thoughts. Following is the text reproduced from a Word document as it originally appeared:


This Is A Story of Descent


3-17-11 The first signs likely went by as aches and pains related to the job. A sore arm, an occasional cramp, frequently a kinked back. If I reflect, I might conclude that a first alarm, albeit minor, was having difficulty retrieving my wallet from my pocket.
I’m sure this story has been told before. Often. Likely better written. I don’t know if I’ll even make it to the end of the page. Could be I’ll feel rushed, get distracted or just plain fail to get back to it. I know if I stop for a while and return, I’ll lose the continuity of my thoughts and emotions and the reader will think someone other than myself had continued. I can assure you, only I can tell my story however poorly it proceeds.
I’ll begin with an irony. Keep in mind that irony can be funny, it can be frustrating, and it can be sad- it most certainly is ironic. About a week before “the bomb” was gently administered, I was perusing on line, searching out ailments most closely related to my symptoms which, at the time felt injury or wear and tear related. I told Amy (a prominent figure in this adventure of discovery) I had found a match to my distress. I showed her. I read the symptoms to her. She asked what I had. I said ALS. She said “you don’t have ALS”. We both laughed. How ironic. The joke’s on me. Like the song.
I will be jumping around here. Back in time, forward. A segue here or there. I have no interest in wasting time I don’t have worrying about continuity.
Let’s jump back. 33 years. A brief stay. As a young carpenter I developed numbness in my left (hammering) hand. I went to a hand guy who diagnosed me with Carpal Tunnel Syndrome. In those days the procedure for correction was to cleave the palm of your hand and take six months off work. Yeah. Sure. No way. So I lived with it all these years. Turns out I don’t have CTS. Unless I cured myself (back to that later), I never had it. Always get a second opinion. Anyway, the ensuing years have landed me on my head a few times, on my back, on my ass…… I’ve cut myself, sawn myself and even stabbed myself. I’ve clocked my head with a hammer, a screwdriver handle, the end of an extension cord, smashed my finger, my thumb, dropped plywood on my big toe and cartwheeled off a roof a few times, into a basement a couple of times. No broken bones, no fatalities. I even managed to build a few houses.
3-21-11 I don’t think I’m going to follow through with this diatribe with any real diligence. I’m afraid it will develop into a discourse on self-pity. As of now, the central effect of the disease is in my left arm, but I can feel it infiltrating my body like heavy syrup, slowly filling my limbs with degeneration. Though I’m acutely aware of my condition, there is no denying its development. Part of me is in denial, but as this thing progresses, the denial will fade and the realization will take on a life of its own- a monstrous life- and I can guess that my sadness for those around me will be replaced by the sadness and then fear, panic then terror, for myself and my condition.
Part of me wants to uproot and go away from all that I have. I think about letting my bills hit the trash can unpaid, drop my current jobs, dump the house, sell the cars, grab what money is left and live the high life while I can, but I have Amy, and I have responsibilities regardless of my condition, and I can’t leave her to wallow in all the complicated mess I’d be leaving. I don’t know how forgiving my creditors will be. I don’t know what the insurance will cover. I don’t know how long this disease will allow me to live. I don’t know how long I will be able to write my name (with either left or right hand); I don’t know how long I will be able to walk, to talk, to breathe.


If you're reading this, you made it through the rantings of a guy who faced an unknown future. A guy who googled ALS, who accepted the bleak prognoses of a dozen Western Medicine (read it as pharmaceutical driven) sites. A guy who had been given all the tools to agonize over his apparent quick exit from this world. Keep in mind it is now 4 months later, and rest assured, I am still one bad ass hombre even with a weak left arm and shaky legs. Forthcoming find what has transpired since that nuke was dropped on my head back in March. Prepare to be educated on ALS, on denial (and how to use it), on who to listen to, on who to blow off, on who to TELL off, on what to believe, on God, on energy..............
I feel I'm in a unique position to give a perspective not often found. Read on, and thanks.