I know TMI! But if you do read more than a Tweet, here is an essay I wrote about a young man I cared for with MD. This took place in 1980, before we had Advance Directives for Medical Treatment or Do Not Resusitate orders.
Mark's Coming of Age
by Shale Stone
July 1990
New Orleans, 1980
It was just last month that I first met Mark. We only spent the day together but it feels like we knew each other longer. Maybe it was the intensity of one-to-one that day I stayed with him.
I was working for a respite care agency, staying in peoples' homes and caring for their handicapped dependents while they got away for a while. And so it was that I met Mark, 19 years old and wasting away with muscular dystrophy. His only mobility was the electric wheelchair to which he was confined and which he could still operate with the remaining motion of one hand. Otherwise, he had to be lifted in and out of the chair, the bed, and onto the toilet. He had to be bathed and fed by others. His mother usually provided this personal care and on the day that I stayed with him, feeding was the only task required. On the only occasion that I had to place his penis in a urinal, I gathered that he was quite self-conscious of having others, or at least strangers, attend to these personal needs. Although Mark lived with his condition of personal dependence on a daily basis, he was still a self-conscious teenager.
We talked a lot that day. He told me of the progression of his disease, how it started at age 7 and how crutches gave way to a wheelchair by age 13. On the wall was a photo of Mark at about that age, looking quite the average, smiling, exuberant 13-year-old, except for the almost unnoticed handles of a wheelchair at the edge of the picture. The tragedy of it struck me for a moment, knowing the life of an active boy had been missed, but Mark was alive, here in his chair so I didn't dwell on what could have been.
As we talked of current events, and critiqued the popular movies, our different perspectives came into view. As a middle-aged man, I enjoy these few opportunities to talk with adolescents, to hear their fresh insights and discoveries, as well as their misconceptions and errors of logic. From a more steady position of maturity and experience you can observe the turmoil of thoughts being influenced by new input and fluctuations in hormones.
With Mark, there was not only our difference in age that gave us differing perspectives, but also our difference of mobility. He was a recipient of electronic age miracles and had the usual adolescent toys of video cassette recorder, personal computer and video games. We shared an appreciation of modern technology, but it was of particular interest to him as his very mobility and quality of life depended on it. This fascination with modern and future technology would naturally make him enjoy science fiction of the "Star Wars" variety, which we discussed and even trashed on scientific grounds, such as battle sounds in space. But, we both agreed it was a fun movie.
Mark was a young man with vulnerabilities of the heart. The young woman who had captured his fancy lived in another city and they only saw each other once a year at a summer camp for the physically disabled.
Mark was very preoccupied with thoughts of this girl, as it was nearing the time for summer camp. I can't recall her affliction but she was more mobile than him. Their relationship was an innocent adolescent one. He told me they had kissed. I suspected they had felt more. He was concerned that she would find another boyfriend, one with more movement, or that she wouldn't be there this summer. His were the normal over-inflated anticipations of an adolescent mind, oblivious to reality in the pursuit of love.
That was last month. Mark never made it to camp. I was called on this overnight job because he was seriously ill and his mother needed some rest. It was an unusual emergency assignment. Normally, when I stayed at peoples' homes it was for the primary care giver to get away. This time the mother would be at home in her bedroom while I stayed the night with Mark.
Mark had been bedridden for several days and was much thinner than when I saw him last month. His mother asked if he remembered me, and he feebly said yes, showing little attachment to his surroundings. He hadn't been eating or drinking and I was shown the water and the soda, which I was to try to get him to drink. His mother attempted cheerfulness, but the gravity of the situation was evident, as well as its toll on her. She went to her room and I sat by Mark's bed.
He was not the young man of a month past. Youth is measured physically by health and vitality, and not to be found in this emaciated nonfunctioning body. It is also measured by naiveté and innocence. Mark had experienced too much pain in his 19 years and somehow I felt he was now aware of his mortality, which is not the usual adolescent awareness.
We didn't converse that night. Mark was uncomfortable, continuously asking to be moved. When I changed his position it would be just a few minutes before he would complain again. I offered him liquids several times and he refused to drink, with a conscious determination.
I sometimes feel guilty for being so irritated throughout the night with Mark's constant demands to be moved. I had not slept that day and was not prepared to stay up all night. Was this what his mother had been living with for more than a week? Finally the demands came less frequently and Mark went to sleep. I must have had a couple of hours of sleep on the pallet on the floor next to his bed before being awakened at 4:30 a.m.
Mark was mumbling incoherently and I asked through the darkness, "Mark, are you alright?"
He simply said, "Are you kidding?"
I was immediately aware of both the inanity of my question and the biting sarcasm in his. Nineteen years old and dying from muscular dystrophy, and I ask if he's alright.
I turned on the light and saw that Mark was sweating profusely. The bed was already soaked. He was dehydrated and in shock, and most probably dying. I woke up his mother. She went to his side, held his hand and stroked his head, reassuring him and perhaps herself that this was the right course.
I asked if she wanted me to call Fire/Rescue. Almost imperceptively, as if it were a thought not spoken, she said, "I don't want them to resuscitate him." I understood.
I understood why Mark was still at home with his deteriorating condition. I understood his refusal to eat and drink, and although I was not a part of the private affairs of this family, I understood that Mark and his mother had anticipated this moment.
I sat on the bed by Mark and held his hand while his mother went to call his father. Mark was still vocalizing weakly, incoherently, and then he stopped. With one spasm of the chest it was over. Mark lay still on the bed, eyes open, pupils dilated.
Death has been relegated to professionals for so long in our society that it is rare to encounter it quietly in the comforting surroundings of home. We've even come to require an authority to pronounce someone dead, but it was my understanding that dilated pupils meant that brain function had ceased. Mark's dead stare was disquieting, so I stroked his eyelids gently with my fingers, as seen in countless dramas on the screen. It's not that easy. They refused to stay closed, betraying the illusion that a lifeless body is peacefully asleep.
I went to Mark's mother and told her that he had died. We went back to his bed. Were we sure? It's a guessing game with modern technology. At what point is it impossible for someone playing God with a machine to resurrect a person who's already gone through the ordeal of passing on. We waited five minutes, then I called the police to report a death after lingering illness. I described the signs of death and they agreed that only the Coroner would be sent. Mark's father arrived, so I left this family for a few minutes alone before the authorities came.
Guilt is a pervasive emotion that slips around the edges of rational thought. I know that the events of this story progressed to the only reasonable conclusion, but now and then I realize that we sometimes make decisions that involve the life or death of another. I feel the decisions here were right and ultimately were made by Mark's mother with my support.
She was a mother who made a tough decision, and I hope she knows she decided correctly whenever a feeling of guilt slips through. I'm just thankful that she was there, for I could not have made that decision on my own, and would have been required to call 911 as soon as I saw Mark in shock. (This was before "Do Not Resuscitate" orders were a legal option). They probably would have made it in time to disrupt the natural order of things and there is no telling how long Mark's feeble, wasted body would have suffered the indignities of assault before his degenerative disease finally, mercifully silenced his heart.
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