ALS, or Lou Gehrigs Disease: A Confrontation.

I’m in the middle of writing a poem when the phone rings. I read Joe’s number off the caller ID. It’s 9:30 A.M. I set aside my poem and push the button for speaker phone. It’s not that I don’t want to talk, but I know the shortest call will take at least a half hour and most likely more. I am not ordinarily a telephone person. If I had my druthers I’d take email any day, but Joe has no choice.

“Hi, Joe,” I say, carrying the phone into my erstwhile bedroom, now my art studio. “What’s up?” I push the button for speaker phone and set the handset on the table near my newest project, the two and a half foot tall papier-mâché goose that is my first commission. Picking up a brush, I paint while I wait for his reply. Changing gears is always good for my brain and now that I’ve made the change, I find I’m happy to talk.

A distant ka-chunk, ka-chunk, ka-chunk comes back, a pause, then Joe says, “Pam. Pam. Pam.”  It’s actually a computer voice named “Fred” (or something) and it is not so different from Hal in the movie 2001, or more to the point, Stephen Hawkings. But it’s one with which I have become terribly familiar. If I did not have a single mini-tape of Joe and I talking in 2003 about Sister Wendy’s art criticism and what we think about a painting by Rousseau, I would have nothing by which to recall his old voice. As it is, I dominate the tape. Closer to the machine and apparently hypomanic, time after time I interrupt Joe in my enthusiasm, even when he does say something. But I can hear him in the background and when I deign to let him, he speaks fluently and without impediment.

The tape was made three years before everything changed, before slurring in his voice turned out to be the first sign that he had amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s Disease.

———————————————————–

There’s a moment like a car-wreck, when your heart is crushed, no air-bag to cushion bad news. It happened like this:

My wrists bandaged from the day before, I was sitting on my hospital bed in the room without any furniture, only an aide guarding the doorway, when several people walked right in: my twin sister Lynnie, my psychiatrist, and the hospital social worker.  My first thought about them was, A whole committee? What are they doing here? My second thought was, Uh, oh, nothing good can come from this! The fact that Lynnie was there struck me as particularly ominous; she had more power over me than the other two combined. I feared there were to be dire consequences to my previous day’s act of desperation: was I to be sent to the State Hospital, assigned a conservator, forced to have more shock treatments? Each of those things had occurred before and I could not bear them a second time.

I sat forward, my arms crossed protectively against my chest. “Why is Lynnie here?”  I muttered to Dr O, whom I thought of as my only hope and protection, though that hope was fading fast. She didn’t seem to hear or understand. I frowned. The Committee stood, silent, around my bed, towering over me, or so it felt. I cowered. I waited for the blow of some hammer I didn’t want to fall. After several seconds, I couldn’t bear it. “What do you want?!” I finally snapped. “I’m not going to–”

“It’s Joe, Pam,” someone said with infinite gentleness.

“Joe?” You mean this was not about me but about my best friend? Suddenly I understood. Hadn’t I witnessed with concern as Joe’s voice became increasingly garbled over the past 6 months? He had several times choked on food. No one could seem to figure out what was wrong. He’d had test after test. I started looking things up on the internet. I had come across some constellations of symptoms that seemed to match, but the possibilities were simply too dire to contemplate…

“He has Lou Gehrig’s disease.” My heart plummeted; it was as bad as I’d feared. But why call it by what was practically a euphemism? Did they think I’d never heard of Amyotrophic Lateral Sclerosis, motor neuron disease, that I didn’t know what it was? I knew what was in store: with a mind remaining intact and progressive paralysis of every single skeletal muscle, ALS was inevitably fatal.

There’s a moment like a car-wreck. Your heart mangled and torn, no airbag can pillow the punch. No, it was not I after all, but my best friend, dying, the news like a gun-crack at silent dawn. A wail burst from me. I pounded the bed and I hit myself. “I knew it, I knew it.” And I had known, all along, but feared if I spoke the words the terrible truth would become true: somehow I knew it was I who had dealt him such deuces…

_________________________________________________________

Added in Aug 2009:

That night, after the Committee left me in the care of aides still sitting one to one with me, I went to sleep alone in the room cleared of everything but my bed and nightstand and only my journal to write in. I had eaten little dinner, and spoken to no one that evening, only sat numb and silent, or writing by myself in my room, saying nothing to a soul about Joe or myself, about how I felt about either of us… But I was thinking about us, about how Joe, the dear man who was my most loyal and generous and deoted friend, must have felt when he got the news, wondering how he was feeling now…And I wondered how he dealt with it…I could hardly bear the thought of seeing him now, now that he was dying. Things felt to me almost unbearable, unbearably changed.

At the same time, I felt lonely beyond speaking of it to anyone. Despite all the commotion my temper tantrums caused there, and they did, I was alone most of the time trying in vain to control the self they believed i willfully chose not to…In fact I (Oh, I have been through this a million times, and it still rankles, but no more.  It doesn’t matter what they thought. They were wrong and if they didn’t know it or care, why should I?) Anyhow, I felt sad suddenly, not just for Joe, but for all of us, Joe, me, and Cy and Lynn as well, who were elderly and Lynn was very frail after having caught pneumonia in Israel sometime earlier (was it just that January in fact?). I cried a little, quietly in bed, until I finally went to sleep. But I slept shakily despite the Xyrem and kept waking, thinking I heard the aides talking about me…which likely they would not be doing, since what would they give a damn about me for? The book, that trusty old book the Four Agreements has finally pounded that into my head: They had their own lives, their own problems… my losing my best friend to ALS, or at least his body being given over to that terrible illness, was surely not their issue, or their sorrow, so why would they care about me or talk about me? (You see, I know that now, but try to convince me of that then and Id have sworn to you you were crazy, of COURSE everyone was thinking about and talking about me! It was clear as the sound of the traffic on the highway! — which come to think of it, might not have been audible either, though I thought it was, all the time..)

Finally, I guess no one wanted to talk to me, everyone being afraid of me, so they enlisted the Jewish Chaplain to come and counsel me, figuring if they could hear me cry, if she could “get me to cry” they would know I was all right…and that they would not worry about me. I know that because — oh, what the hell does it matter? She was very nice, the chaplain,  and very ecumenical, and I was gad to hear it as I would not have been happy with any religious rant…

When Joe did visit the next day, he looked great, smiling and almost joyful. It was weird. But he said that he felt fine, and he viewed the illness as a great adventure, even the propest of dying didn’t faze him. Besides he said, he was on the ten year plan…He figured if he could last three years, outliving expectations, then live five, he’d be good for the unheard of ten, maybe fifteen, or even twenty, who knows….And I believed him, just listening to him tell me his plans.

You know, I think his very optimism has carried him far.  See how is he is now, but he hasn’t gotten pneumonia a second time, quite despite the ICU’s predictions of constant recurrences and his making an early decision to die…No, he had one infection with C. dificilis, but after that, which was cured, despite its reputation for hanging on and on, he seems to have been quite well, and very well taken care of. NO bed sores for one, which to my mind indicates excellent care of someone who hasn’t left his bed or his supine position for more than two years…Which brings me to the case in point: he has made it three years! He was diagnosed in August of 2006, after havaing been ill since at least January. And it is now Aug 2009. So that makes it Three years he has survived this crummy disease. I asked him how his movement was and he was able to make some shaking movements so he has some muscle fibers yet…All is NOT as “gone” as I’d thought! He even has a twitch or two in his fingers…So he could use switches for all sorts of things, if he would let the staff know he had the use of those muscles. But he doesn’t, for some reason. When tested, he lies completely still and doesn’t let on that a single fiber remains active. Its as though he doesn’t want to move a muscle fiber any more, doesn’t want to live, physically, only wants to live in his mind…Forgive me for saying this, but it felt that way from the moment he was hospitalized. He simply abdicated moving once he got pneumonia, he stopped fighting and surrendered completely.

Why do I say that? Well, he never again tried to walk or move his arms or do anything that he could do before he got ill, and I think he probably could have done them or been rehab’d to doing them, had he simply wanted to. But I think being sent to the Hospital where he would be on a vent and trache for the rest of his life gave him permission to take on the role of paralyzed patient early, and he saw no other way…Perhaps he didn’t know that there would be other freedoms, like the step down unit and going outside with a portable ventilator, if he had tried harder to use the muscles he still had (after all, even with pneumonia he had been walking and driving and doing everything a non-sick person does, though with increasing weakness and difficulty. He had not yet begun to use a cane and had only just caved to getting orthotics made for his ankles…). I know he was terrified of being wheeled into the dayroom and left there to do nothing all day but be captie audience for soap operas and cartoons, but he wasn’t even trying to let anyone know he had muscles for them to train, or rehabilitate….so no wonder no PT therapists came for him!

Oh well, it was his choice, unconscious or not. It is all water under the bridge now, I guess. I just feel bad that he won’t even now let anyone know that he has this remaining ability to, say, shrug that could be useful…I have to beg him to blink his eyes to say yes, when we are using the alphabet board, but it seems to me that there would be other easier ways to communicate with us without the ERICA, if he would admit to the SLP (Speech-Language Pathologist) that he had muscles they could use to arrange something, hook him up to something.

Enough of this for now. I have a headache and this ain’t helping nothing.

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