ALS Through the Eyes of a Grandchild by Tommy Mallery
Posted by: ddourney Jul 01, 2014
I couldn't even begin to estimate the amount of times I have uttered the phrase, “my Grandfather passed away from ALS.” Whenever these words leave my mouth I am expectant of some kind of ordinary response like, “ I'm very sorry for your loss;” a response given without much thought and even less insight into the experience of watching someone you love and admire slowly deteriorate before your eyes. I myself have uttered that phrase passively, without thinking of the implications suggested. I can't fault anyone who has not observed the diseases wrath for not understanding the very slow, and agonizingly degenerative process that grips every single physical faculty of a loved one, and wrings it clean of vitality, all the while making its victim watch, lucidly, the dissipation of control. There are so seldom opportunities in life to have control. One such constant, though, is the control we retain over the physical functions of our body. My Grandfather, Charles Dourney, aka Hark (an affectionate name given him by Grandma), had always been an exemplary model of a man that gained a high level of control over his body. In his youth he was an athlete, more specifically, a minor league baseball player for the Brooklyn Dodgers – an achievement I was reminded of on numerous occasions, and one that I would keep in the oily palm of my glove while standing languished on the mound as the sun weighed heavily on the brim of my cap under which my brow knitted to elicit a commanding and dauntless presence to the dug in batter. The batter was never my real concern. All my concern was focused on relieving the severity in the face of the man behind the backstop. That man was my Grandpa. I could hear his voice rise above the roar and conviviality of hundreds of cheering spectators. His glare was sobering and corrective. His massive hands would curl around the steel fencing like a gorilla in captivity, and only move when a correction to my motion was needed to be conveyed through passionate animation. I knew with precision that I had done something right because his hands would relinquish their bestial grasp and his lips would retract inwards to capture and yet evoke a feeling of satisfaction. If I put down a batter and the crowd cheered it was of no great reward unless I saw with complete certainty the pleased countenance of the man behind the fence.
This was a man that could instill me with an impenetrable confidence by at the same time uncovering the boundless capabilities of my talents through my susceptibility to squandering them. It was his greatest fear to have me not live up to my full potential. In his mind I am ripe for great things that require physical prowess, a sharp intellect, and a tireless work habit. These attributes and more I could obtain from simply watching him. There was a presence about him that startled whatever slept within me. The way he carried himself was with great determination. The day before him was of no great concern, much like my indifference to the batter at the plate, there was some greater force demanding more of him. Whenever I was in his company, whether at family gatherings during the holidays, or for a birthday, he had this ability of awakening my ambitions by a simple tug of his pant leg whenever he was sitting down. It was a very subtle yet unnerving habit of his – mind you, unnerving to me and quite possibly not to anyone else but me – that seemed perceptibly innocent, only my reaction to it was always a visceral tragedy. I felt this habit of his was not a habit alone but a right gained by the bluest of valor. It was a symbolic gesture of resistance against any general form of solicitation. It was his manner of conveying his sovereignty. This small gesture was an act of brooding in response to the full exertion of his usual conduct. The posture he inevitably took on was one never to be mistaken for selfishness or lassitude, but a precedent for the unspeakable rewards of hard work. There was never a moment that I witnessed where he didn't utilize every mechanism of himself in order to overcome any minor challenge. Those challenges only being seen as minor by the ease of his surmounting them. He had a ferocity of will that was capable of naming every abstract weakness in a settled glare. When I looked at him I believed that weakness was a farce, manifested by those unwilling to invoke the fortitude necessary to accomplish a conceived task. He was many things: a teacher, a coach, an athlete, a father, a grandfather, a boss, a veteran, an entrepreneur; and yet none of these titles were able to define the true character of his spirit. It was my conjecture that he would prefer an identity that was examined only by the fruits of his labor. The beauty he was able to create in correcting a golf swing could be witnessed by swift velocity in club speed, high arcing range on the ball, invariably leading to precise accuracy in its placement – the sequential glory evident in the restructuring of one's bad habits is what I believe my Grandpa lived for.
I can remember with clarity when the disease first curled its grotesque fingers around the man that I saw as invincible. I had overheard my Mother talking to one of her sister's saying that my Grandfather had been having trouble eating; “he's been choking a lot,” my Mother said repeatedly, as if the voice on the other end of the phone was unwilling to reckon such disquieting information. When I would see my Grandfather, mainly at the gym, I could tell something was happening to him. Whatever it was, it remained a subtle constant, and each time I saw him its destiny was made sharper, clearer – it was revealing itself through the dissolution of my Grandfather's motility. Most times I encountered my Grandfather was at the gym. If he was able to get out of bed of his own volition then he made damn sure that a visit to the gym was made a priority on that august day. I began to consciously schedule my gym visits so that they would coordinate with the time that I knew he would be there. Something was drawing me to him. I felt compelled to see him as much as I could.
My Mother had adopted the responsibility of his care and was determined to find and treat whatever diagnosis was growing nearer to the surface of our lives. She traveled from one specialized physician to another, advocating his symptoms, conferring with doctors, questioning their conclusions, all with my Grandfather – whom seemed impartial, almost indifferent to the discourse over his life – in tow, objective to the chaos of opinions, and willing to undergo whatever procedure or tests that were deigned necessary.
Our encounters at the gym became more frequent and our conversations less comprehensible. The only way to describe his speech pattern at this point is to say it was mushy. It was comparable to the speech of someone who had recently suffered a stroke – only he had never suffered a stroke. The muscles in his face were not capable of synchronizing with the thoughts in his mind. At first I could decipher what he was saying simply by his mannerisms which I was able to attach and summon from our past conversations. His animations remained as passionate as the days when I was on the mound and he growled with primal intensity behind the backstop. It seemed almost natural to communicate with him in this manner. It was rare that he had to say anything to me, or to anyone for that matter. His glare was enough to redirect ones behavioral trajectory. Another constant that I witnessed alongside of his humble malady was a heartily joyful disposition. I never left him without being graced by his smile. Even though his verbal message was unreceived, I believe a greater message was being received in abundance, and that, is what gave him the courage to smile as the ship he sailed through a multitude of adventures sank perpetually into the harshest of seas.
My uncles arranged a night one day a week that we would play pool together at a local lounge. It began with just the three of us and soon we integrated my Grandfather to give us all some time together. At the time it was the highly anticipated night of the week for me. I always looked forward to hanging out with three men that I had always admired growing up. I had stood non-existent in the corner of my Grandfather's basement while my uncles waged an emotional war under the clicking pool balls and amidst the swooshing of slashing cues in reaction to a missed opportunity of advantage. I stood watching with a fixed gaze of wonderment. The atmosphere was volatile in that basement, and just being there one felt endangered by the abolition of courtesy. They fought for every shot. No matter what the score or the time of night they lost themselves within the game; only to be startlingly awoken by my Grandfather's presence. I then watched as my Grandfather propelled every ball down it's fateful pocket like garbage down a chute, his wide frame hulking around the edge of the table in a noble fashion. And then once the table was cleaned of its remaining scraps he would disappear like a phantom, leaving the spectators to ruminate on their paltry conquests. I felt as though now I was included in the action, in the struggle for billiard superiority. However, only one man still reigned supreme even though the peasants felt themselves worthy of the crown. I now watched my Grandfather lean delicately, yet masterfully over the table and strike the cue ball with an artisans skill as drool poured from his mouth sluicing the tables edge. As my uncle ran to his side with a napkin to absorb the residual dangling from his lips, I observed with more interest the struck ball glide into its intended pocket. I clapped and assured him that it was a shot meant for perfection, only to effect a suggestive smirk from his now dry lips.
The disease was becoming more acute at this point and was taking from him what it needed to blossom into the sordid chasm that is the apex of all disease. He had to sit down multiple times throughout the night and rarely attempted to speak other than to communicate a desperate need of some sort. I stopped seeing him at the gym after the doctors discontinued his driving privileges. The only times I could see him were when I went to his home and visited with him. He had rejected the idea of a feeding tube, and began rapidly shedding mass, disguising himself from the brute man of physical dominance that I had always recognized as my Grandpa. My Aunts and Uncles enveloped him, took turns caring for him and tending to his every wish - each one bitterly simpler than the last as my Grandpa was never one to ask for anything, but to work for it was the only way. Nothing good came without blood, sweat, and tears. He cherished the agonies of labor over the criminality of expectation.
My Mother called me and said that the hospice nurse advised them it would not be much longer; he had a life expectancy of a day or two at most. I immediately made my way over to his house and found him there reclined in his favorite chair, his body wilted and his poise fading; my uncle stood behind him with his hands neatly parting my Grandpas hair in order to console, quite possibly himself, and to aid in maintaining my Grandpa's flawless dignity. My aunt Mary, my Grandpas sister, sat beside him on the couch clutching his hand and smiling almost as big as he was. I confessed to myself that this was the last time I would see him. I don't even remember what I said. I just hugged him and thanked him. I was grateful to have had a man like him in my life.
And so I must return to a remark I made at the very beginning of this piece. I stated that the response to my Grandpas passing away from ALS was always so thoughtless and no one really knows of the implications involved within the diagnosis. And that I myself have spoken about the disease with forgetfulness as to the dire succession of pain and suffering that is integral. I forget because of my Grandpa. Most would believe that being so close that I could have figuratively touched it, would give me some higher insight, some invaluable perspective as to the diseases unknown capabilities; but it happened to be the opposite. I am passive when speaking about it because my Grandpa was passive in fighting it. He never allowed it to infiltrate his happiness, the only place where a disease can truly injure ones life. I am forgetful of its wrath only in the serenity of his acceptance of it. I will, however, never forget its name, or its face, and when I see that face in others – Fathers, Grandfathers, teachers, athletes, veterans, bosses, entrepreneurs – I know as of this moment the only analgesic for it's devastation is a smile, which my Grandpa would be reproached to accept if only knowledge and hard work was required of its end.