A Life Beyond Reason

by Chris Gabbard

  “I don’t know what you mean.”

  “How long have you not said anything?”

  “I don’t know what you’re talking about.”

  “How long have you been hiding this ace up your sleeve?”

  “What are you saying?”

  “How long were you planning to keep this concealed?”

  “We haven’t concealed anything.”

  “How long have you known?”

  “I don’t know what you are thinking, but you’re wrong.”

  “I suppose it’s just serendipity,” I said. “For three years he’s arching himself into a knot, and you don’t know what the hell his problem is. You lead me to believe it’s not your problem to solve. You say, ‘Let the neurologist deal with it.’ But now Ilene and I want the pump removed, and all of a sudden you know what his problem is. It’s dystonia.”

  “It took time to diagnose.”

  “Three years? Give me a fucking break! You expect me to believe that? But wait! Are you just making this diagnosis up?”

  Her expression indicated that this was a ridiculous thing to say. “This is dystonia,” she said, trying to maintain her composure. “It’s a movement disorder in the same family as Parkinson’s disease.”

  “Yes, okay. What now?”

  In a low voice she said, “There’s a dystonia clinic operating at the medical school.”

  This information took a moment to register. And then I was thunderstruck.

  “What? You’re fucking kidding me, right? There’s a clinic within driving distance? A clinic nearby? But no one thought to tell us about it? There was August, arching for all to see, off and on for almost three years, displaying this condition before an army of medical professionals, living a life in hell, and it didn’t occur to you or anyone else to inform us that his condition was dystonia and that there’s a clinic nearby?”

  “No,” she said, “you have it all wrong.”

  “No. I don’t have it all wrong. What is there here to be wrong about! You haven’t done the best you could do for August.”

  “We’ve done the best we can do for August.”

  “Like fuck you have! Do you not see what you’ve done? Can’t you see? You’ve destroyed him. You’ve destroyed my son!”

  “Calm down! Get a grip on yourself. We’ve done—”

  “You’re the one who talked me into this.”

  “Wait! What? No! The pump was indicated based on the patient’s medical profile.”

  “This pump was your idea!”

  “I encouraged you to consider the pump because it was the better of two options.”

  “The pump has been a fucking disaster! I wish we’d never met you or that scrofulous shitbag, Dr. Joyce.”

  “The pump has nothing to do with what is happening now.”

  I stared at her in disbelief. She was insulting my intelligence.

  “As I’ve told you many times,” she said, “there is no way that the pump can be implicated.”

  “There is no way that the pump can be implicated,” I repeated in mockery. “And while I’m on it,” I said, slightly changing the subject, “the one lesson you should take away from this sorry episode is this: you should never again implant a Relaxanoid pump in a nonverbal child.”

  I’d struck a nerve. Dr. Sandemelir stepped back, as if stung by the charge, and then said in an icily adversarial tone, “His being nonverbal has nothing to do with any of this.”

  “He was a bad candidate from the start,” I said. “But you needed patients. And while you are at it, feed me that line again, you know, the one about ‘we’ve come a long way!’ About medicine’s great strides.”

  “But we have come a long way.”

  “That’s cold comfort,” I said. “How many people died yesterday to get us to where we are today. Medicine sits on top of a graveyard.”

  “We’re just human beings,” she replied vehemently. “What do you expect? Do you think we understand everything in advance? Do you think we are perfect? Do you think we arrive on the scene all-knowing?”

  “Give me a fucking break! Every one of you acts like you’re all-knowing!”

  “No. You give me a break! You and your wife came to us and said, ‘Please do something.’ And we are doing something with the knowledge we have. We don’t set out to hurt people. We don’t experiment on them. We try to help them. And, yes, people have died despite our best efforts. What we’ve learned from their deaths has brought us to where we are today. It’s a cumulative process. It’s the scientific method. It’s how we advance.”

  “I thought the history of medicine was over!”

  She looked at me surprised. “Whatever made you think that? It’s never over.”

  “Then history is a nightmare,” I said, dismayed beyond all reckoning. “I thought that all of the advances had already been made! I thought the pump’s experimental phase was over. I had no idea you were still beta testing. I never would have agreed! I didn’t sign him up for this! I don’t want my son to be cannon fodder for future victories. What if it was your child? Would you sacrifice your child on the altar of progress?”

  This got through to her. Her mood abruptly shifted, the expression on her face morphing from confrontation to apprehension. Having two young children of her own, she understood. The loss of our children—how could we ever bear that. For a moment the two of us stood silent and still, staring into the abyss.

  “It was selfish of me,” I continued more quietly, “but I wanted him to benefit from yesterday’s victories, not contribute to tomorrow’s. I didn’t volunteer him to help some future kid. What are tomorrow’s victories to him? Or to me? I just want my son back, the way he was before the pump.”

  A few minutes later Dr. Sandemelir left, and that was the last time I spoke with her. After she was gone, I called Ilene. I immediately and sheepishly admitted that I had yelled at the doctor. Then I told her that Dr. Sandemelir had diagnosed August’s arching as dystonia and had informed me that a dystonia clinic was operating eighty miles away.

  “Dystonia,” she repeated, not as a question. “Of course.” And then there was a long pause. “I should have thought of that myself. I don’t know why it didn’t occur to me.” And then there was another silence as the implication sank in further. “It’s not just dystonia, but severe dystonia.” Then she observed, angrily, “She waited until we wanted the pump to come out to tell us this?” Another break in the conversation followed, and then she said, “So what’s going to happen now?”

  “Here’s my idea. August is going to remain under Dr. Sandemelir’s care for the time being. We’ll gradually turn the pump down to taper him off Relaxanoid and avoid drug withdrawal. And then in a month or two, when he’s in better shape, we’ll schedule a surgery to remove the pump.”

  She contemplated the idea for a moment. “So your idea is we’ll go back to Botox injections and oral Relaxanoid?”

  “Yeah.”

  There were a few seconds of silence. “Okay. That sounds about right. That’s a good plan.”

  “And once August’s recovered from the surgery, I’ll drive him to this dystonia clinic to see if anyone there can help him.”

  “Sounds like a plan. So somehow we’ll get back to July 7, 2010?” she asked, hungry for encouragement.

  “Yeah, we’ll get back. Give or take a few hours. Don’t worry, we’ll be the lucky ones.”

  We gave each other our usual sign-off, “Love, love,” and hung up.

  That Monday evening Katrina arrived at six to watch August in his hospital room. I went for a jog. When I returned, I noticed that August was starting to develop a little runny nose. He had had many such sniffles before. Already that day, he had shown considerable improvement, and I assumed that things were on the mend. Having a lot of grading to catch up with, I prepared to go home.

  August was lying in the hospital bed wearing an orange T-shirt and a diaper. Arching as he was, he was now batting away again at his noisy Activity Atom and giggling. And the
n I heard it, the laugh of Medusa.

  Katrina said, “What’s so funny, Augie?”

  I felt relieved. It was a sign that he was feeling better.

  At 7:45 p.m. I left him in Katrina’s care. But before leaving the hospital, I made a point of speaking with his night nurse, Madison. She had just come on shift. Young, pale-skinned, fresh-faced, she was a newly minted product of the nursing program at UNF. I had spoken with her before, and I knew that she wanted to do a good job. This was her first full-time position. She had dreamed of one day becoming a nurse and working at a children’s hospital. Now that day had arrived.

  “Please keep a close eye on my little boy tonight.”

  “I certainly will, Mr. Gabbard,” she said, nodding enthusiastically. “I will check in on him frequently.”

  I left the building under moonlight: a waxing gibbous moon had passed the zenith. When I was pulling out of the parking lot I remembered that I hadn’t given August a kiss the way I usually did when leaving. I’ll give him an extra kiss tomorrow morning, I thought as I drove away. I planned to return to the hospital a little after six the next morning, Tuesday, to get him ready to go home.

  Katrina remained with August until after he had fallen asleep. That was at 10 p.m.

  At a little past midnight, Ilene and I had just fallen asleep when her cell phone rang. She answered, and someone on the other end told her that August was having trouble breathing. We decided that I should go back to the hospital and that she would remain behind with Clio, who was asleep and too young to be left alone in the house.

  As I approached them this time, the glass doors of the hospital did not shoot back a reflection: light emanated from within. I took the elevator. On the sixth floor of the Tower, a broad well-lit corridor appeared when the door opened and, beyond it, a set of white double doors. Someone on the other side, at the nurses’ station, would have to press a buzzer to allow me in.

  In the sight of him was no bode of dawn. I knew instantly that we were never going to wind up the lucky ones. Madison was distraught. The floodwaters had risen too high, and no wise old sorcerer was coming to make them recede.

  I called Ilene. Our neighbor across the driveway, Suzanne Honeycutt, came over to stay with Clio, who remained asleep. Ilene soon arrived, and we assembled in the same room where hours earlier I had said to Dr. Sandemelir, “He’s going to take this pump with him to the grave.”

  The Kangaroo had been turned off. August was unconscious. The sniffles had turned into pneumonia. It had come on quickly, the way these things sometimes do with children. In his contorted posture, he hadn’t been able to clear his fluids. His breathing now was exceedingly labored. This was the death rattle I had heard when Dad lay dying nineteen years earlier. I knew now why John Keats had written the line “a living death was in each gush of sounds.” He had nursed his brother Tom when he was dying of tuberculosis. This was what death sounded like.

  Although we could have, Ilene and I didn’t request that August be placed on a ventilator. The attending physician, Dr. Choudhury, a young woman from India, didn’t try to change our minds. She asked if we wanted him to be given morphine. We did. Morphine impedes respiration. August’s breath came slower and slower.

  “I switched to pediatrics,” Dr. Choudhury said, tears welling in her eyes, “to avoid scenes like this.”

  It was strange to be with our son and not hear the Kangaroo, so accustomed to its sound had we become. We couldn’t tell how much consciousness remained, so Ilene and I took turns whispering in his ear. When it was my turn, I sang the “Good Morning Song.” You never understand the difference between life and death so clearly as when you are watching someone die. Death is a maelstrom that sucks us in. August was going in before me.

  “My darling boy,” I whispered in his ear, “my moon and stars.”

  In his ending was his beginning. At nearly the same hour of the early morning that he had been born fourteen years earlier, he died in our arms. We laid him on the bed, and Dr. Choudhury lifted his left arm from the linen and held it at the wrist. A large-faced analog clock was mounted on the wall behind her. She glanced over her shoulder to note the official time, announcing in a neutral tone, “2:20 a.m.”

  And that was that. Afterward, there wasn’t much more to say about August except that he had been the boy who’d made one little room an everywhere.

  X

  THE MORNING AUGUST DIED, ILENE AND I BROKE the news to Clio. It was still the early morning. She was eleven, two weeks short of turning twelve. She was in her bed, and when she understood what we’d said, she bolted up and ran wailing through the house to his bedroom. There she threw herself down on his empty bed and howled. And there she remained a long time. The saddest part of someone you love dying is knowing that he will never come back to hear you say you love him. In the years following she took her brother’s death stoically. Too stoically, perhaps. Almost four years afterward, when she was nearly sixteen, she was walking in the neighborhood and saw a car’s tire run over a butterfly. She burst into tears and immediately called her mother to tell her what had happened.

  In the months following August’s death, I was pierced with regret each time I remembered something that I had intended to do for him but had never gotten around to doing. A thousand little pangs. I walked through San Marco Square, past the fountain and bronze lions and Starbucks, gazing upon the luxurious shops as though they were the storefronts of a Potemkin village. I drove in a daze by Craig Creek and through the streets of my well-heeled suburban neighborhood, oblivious of the stately homes with their harmonious landscaping. I saw the swanky houses on Alhambra Drive with Jaguars and Jeeps and Land Rovers parked in their driveways and with their fussy front yards, an exhibition of the prosperous arrogance of a world in which death had no place. But now I knew that dwelling behind these façades was the inevitability of death. Death no longer was an abstraction. For me it had become the only truth.

  Some of our friends mistakenly assumed that August’s death brought great relief for Ilene and me. It is true that attending to a boy who couldn’t do anything for himself had made the days hectic. Such caregiving required round-the-clock attention and meticulous tending and planning. But, despite the difficulty, every day Ilene and I had sallied forth with a sense of purpose. We never questioned what was important because we knew. Over time, the caregiving, a deceptively rewarding practice, had become deeply entrenched in our psyches and allowed bonds more intimate and intense to develop than those between most parents and their typically developing children. To care for a child dependent in every way, day after day for many years, is to build up an emotional communion beyond the average person’s comprehension. In every possible activity, we had to serve as our son’s eyes, hands, and feet. Caregiving was taxing, time-consuming, and exhausting; a laborious, never-ending responsibility; an undertaking that was emotionally, physically, and financially draining. Yet it was also a tremendous event, a peak experience, the defining time of our lives. And now we grieved for its loss as well as for the loss of our child.

  The death of a son or daughter is the second club you never ask to join. My little child, Ilene would think, you never did come home. August was a poem in a collection that had gone back to the library. His possessions remained untouched in the little elfin grot at the back of the house, the small room with a white door, the walls of windmill wings blue, and his electric hospital bed in its southwest corner. In the first months after his death I used to curl up in that bed and lie there among his sheets and pillows and abandoned toys, his ghostly hand stroking my hair. I felt as though the spirit of the world had died. The days of being an ironic dad were over. There was no way to be ironic about this. Irony was broken. I had found in life the one thing that was true, and now he was gone. The best joke I could muster was that, like many good men before him, August died in the Tower. But there was nothing ironic about this statement, and the most I could manage to accompany it was a grim smile.

  When I wasn’t overcome
with grief, I was filled with vengeful fury. I wasn’t as unsettled as the people you sometimes see on an urban street, muttering, gesturing, rehashing past wrongs, but these visibly disturbed people suddenly made sense to me. All of the angry people in the world now made sense. They made sense because I had become one of them. Every time I drove by Bensalem-Salomon, I wanted to burn it to the ground. I wanted to burn down the house of medicine. Our story was sad and tragic, but it wasn’t unique. Credible sources estimate that tens of thousands of Americans, if not hundreds of thousands, die every year from medical mistakes. Medical error is reportedly the third leading cause of death in the United States. So there was good reason to be angry. Songs from the band Linkin Park filled my iTunes playlist for listening when I went running. In one, the late Chester Bennington belts out the lyrics to “Burn It Down.” Hearing it, my heart would pump a little harder. I would run a little faster.

  Ilene and I eventually decided that the moment had arrived to sort through August’s things. We would donate some of them to charity, keep others, and discard the rest. We sold the electric hospital bed. The family continued to call this August’s room even though I had moved into it, transferring my home office from the front of the house: the computer, desk, bookcase, and a filing cabinet. The bookcase was placed in the corner of the room where the electric bed had been. I didn’t paint the walls or baseboards or door when I moved in, so I was surrounded by windmill-wings blue.

  When I sat at my computer, the room’s east-facing window was behind my left shoulder. Out that way I could see the neighbors’ grassy yard filled with gigantic oaks. Clumps of Spanish moss hung from the foliage like ghosts a recent hurricane had flung into them. Through gaps in the moss and branches appeared broken bits of sky. Beneath them were shrapnel-gray shards of the Duck Pond. As before, at a certain time of the morning during a certain time of the year before spring, a ray of sunlight would shoot through this window and land on the wall to my right. It would be the color of Laughing Orange.