Reasonable people, p.49
Reasonable People, page 49
That night as we made the posters, the subject of my father came up when Lowell, my older sister’s husband, uncharacteristically announced his displeasure with the man: specifically, the decision not to fly out for the wake. This led Jamie, Eileen’s brother’s wife, to ask me if I intended ever to speak to my father again—a difficult question, to say the least. A discussion of forgiveness ensued with all of the generous, well-adjusted people recommending the practice. The strange thing was that I felt the desire to forgive him, and even to ask for his forgiveness, but I needed him to do the same. This was a man who had not once said he was sorry for anything, to anybody, in his life. Not ever. The more I observed my brother’s boundless devotion to his son and considered my father’s cavalier self-absorption, the more furious and pessimistic I became. In the immense lecture hall of life, I realized that even death couldn’t offer any instruction. My father was like those students I’d had in Florida who sat in the back of the classroom and read the newspaper while the rest of us plunged into Melville, Twain, Chopin. Of course, I let those students check out, but only after much unprofitable cajoling and harassment.
* * *
—
Emily arrived early Sunday afternoon. I helped her move her luggage into the hotel room and played with DJ, who had behaved terrifically in the car. The wake was at 4:00; we didn’t have much time to get ready. I asked my Aunt Maureen to stay with DJ while I spoke to Emily about the wake. There was to be an open casket, and I seriously questioned the virtue of bringing a twelve-year-old Autist recovering from PTSD. He’d already told Emily, however, that he wanted to go, even when she explained to him that Charlie would be lying there in a casket. “we’re family,” DJ said, and I didn’t know how to rebut this argument. All I could think of was DJ, for years to come, perseverating on the image of Charlie’s lifeless body.
Eileen had asked all of Charlie’s cousins to write little notes of remembrance that she would hang on a tree the family intended to plant in Charlie’s honor. She’d have the tree in a pot at the funeral home. Emily and I had to rush to get DJ ready for the wake and to compose his note. I’ve already offered much evidence against the theory-of-mind hypothesis that dominates the current understanding of autism, but if DJ’s note doesn’t inspire the experts to be a little less sweeping and definitive in their pronouncements, I don’t know what will. Sometimes I think of DJ as abnormally gifted when it comes to emotion and social awareness—at least at their most urgent levels. He is, one might say, a savant of grief: not just his, but others’ as well. Consider what he wrote to James and Eileen. (Because we obviously surrendered his letter, I can’t reproduce its typographical idiosyncrasies.)
Dear Uncle James and Aunt Eileen,
Charlie is free. You yearn being with him. You love him. To be without him is sad. He was so cute. You pleased him when you smiled. I love you. Grief isn’t easy.
Love,
DJ
Once again, he overidentifies with Charlie, thinking of him as having escaped a world of hurt (cancer) and achieved independence from his parents, but at a terrible cost. Doing this gets him into trouble, as he’d come to realize a few days after the funeral, when he’d ask, “can best also be worst?”
“What do you mean?” we’d say.
“my freedom,” he’d reply. Though Charlie’s death would offer him a chance to reject independence outright, DJ wouldn’t take it, opting instead for a more ambivalent attitude. He’d want to know if he could express his ambivalence in a manner that would still allow him to move forward. This would necessitate a different relationship to, even conception of, language. Instead of all-encompassing words like “free” or “great” that could generate ambiguity by virtue of their renunciation of distinction, he needed to generate that ambiguity conventionally, with a host of much less capacious vessels. It’s important to understand that I’m not talking about expanding DJ’s vocabulary, because his vocabulary was actually quite expansive. I’m talking about getting him to eschew his talismanic approach, which seemed to be a function of perseveration. He’d find a word and through repeated use it would achieve extraordinary meaning. In response to seeing Charlie at the wake, for example, DJ would type to Emily, “you really look hurt. you might leaveme. very hard to dread great place i.m nervous because charlie freed but looks might wake.” The feelings and their formulations, in short, could become straitjackets. But he was also capable of fresh insight. Is there anything more piercing than the note’s colloquial summation: “grief isn’t easy”?
* * *
—
None of us was prepared to see Charlie in the antique stroller. Instead of a casket, James and Eileen had decided to put him in a familiar object. Whereas on the one hand it was comforting to see him in the stroller, on the other it was almost more shocking—what DJ called “unfourseen great hurt.” The room in which the wake took place was long and narrow; you entered toward the back and first saw James and Eileen receiving mourners. Only after you greeted them did you see Charlie. The sight repeatedly elicited gasps and sobs from the many people who filed through.
Charlie looked like a porcelain doll; there was a bit too much makeup on his cheeks. Whenever there was a slight lull, James would walk to the front and give his son a kiss on the forehead, causing everyone near him to cry. When Emily and DJ appeared about a half an hour into the four-hour observance, I joined them in line and moved through again very quickly; we didn’t stop at the kneeler that was set up in front of the stroller, though DJ seemed to want to. His eyes were as big as half-dollars as he passed his cousin. Eileen had made a point of thanking DJ for his note, and James had given him a big hug. Family members congregated in the chairs toward the back and waited for the service, which was to begin at 7:00. We knew that DJ couldn’t possibly wait until then, so Emily and I took turns going for long walks with him. At one point, I think my uncle and my cousin went for a drink—the tension and sadness were excruciating.
James and Eileen had asked me to read my poem at the service, but when I’d agreed, I hadn’t known that I’d be reading it with Charlie next to me in the stroller. I honestly thought I might pass out while reading it, and if I didn’t pass out, I’d most certainly break down. I’d never before given a reading like this. Chuck had shared the poem with them, and Eileen had said she wanted people to know how difficult the experience of Charlie’s illness and dying had been. She was glad that I hadn’t sugarcoated it. I was glad that they had liked the poem, but terribly anxious about reading it.
By the time seven o’clock came around, there were more than a hundred people in the room. Chuck began the service, and each of the siblings then rose, sometimes accompanied by their spouse, and said something about Charlie. My older sister and her husband presented a video they had made. The video set pictures of Charlie to music, including the song that had been playing as he died. This positively wrecked everybody; there wasn’t a person left standing on the sidewalk of despondency after this beautiful vehicle moved through. Paul, Charlie’s godfather, gave a moving reflection, as did Eileen’s siblings and in-laws, Marie and John, Patty and Joe, and David and Lisa. I remember Lisa’s reflection especially. An English professor like me, she used a famous passage in Freud about the young child’s anxiety in the face of his mother’s absence to talk about the problem of death. A game like peek-a-boo teaches the child how to master his anxiety, even to derive pleasure from the act of rediscovering his mother’s attention. Lisa suggested that we might all now play peek-a-boo with Charlie in our memories, keeping him alive and present that way. What she said made me think of DJ’s struggles with absence and his refusal, in a sense, even to cover his eyes, so desperately did he want to make sure that Emily was there. All I remember about reading my poem, besides the pounding in my chest, was privately congratulating myself seven-eighths of the way through: I hadn’t broken down. But when I got to the last line—“Good-bye, Charlie, good-bye”—I just sobbed and sobbed.
A couple of days later, I’d ask DJ what he thought of my poem. “it really got. me,” he’d type. “breaking my heart.”
“That’s what poetry can do,” I’d tell him. “It can break your heart and somehow, at the same time, put it back together.”
“do god try to jutm hit us,” he’d ask. “does he not relize how breaks our heartsto lose.” His metaphor would stun me. God was like his birth mother or Kyle. God sent you to foster care. God beat you mercilessly. After a slight pause, DJ would add, “the trees.”
“What do you mean?”
“you know dad. they have no leaves.”
Still later, he’d write his own poem about Charlie. In it he’d adopt a very different theological perspective. I’d marvel at how well he’d have assimilated the deterministic consolation of a certain kind of faith. Who knows if he really believed this or if he simply wanted to practice consoling himself and others?
CHARLIE
He was such a beautiful boy.
from the time he was born everyone knew he was an angel.
He could fikll a room full of joy.
He just followed the path given to god.
The funeral was grandiose. It took place in an enormous church, even bigger than the one in which the pre-surgery mass had taken place. Hundreds of people attended. Chuck gave a stirring eulogy in which he reminded everyone of how Charlie’s illness had stitched together a vast community of well-wishers. Through e-mail and prayer people literally all over the world had pulled for Charlie. Charlie, he contended, was now in heaven and could be called upon for comfort and courage. James and Eileen then gave their eulogies; both of them remained astonishingly composed. James told a funny story about the day Eileen was released from the hospital after giving birth. They were in the car with Charlie, and James asked, “What should we do now?” To which Eileen replied, “I think we should call the pediatrician and set up an appointment.” So, Eileen called, and the woman on the phone said that she had an opening in twenty minutes. Could they come right now? They drove to the pediatrician’s office, checked in, and proceeded directly to an examination room. When the doctor appeared, he asked them how Charlie had been doing since leaving the hospital. James and Eileen looked confused, confessing that he had just left the hospital. “Then why are you here?” the doctor inquired. At which point, Eileen began to cry, exclaiming, “I’m not sure I’ll be a good mother.” All of their new-parent nervousness erupted in a torrent of worry and tears. “The fact that you have come,” the doctor said, “tells me that you will be good parents.” Looking out at the congregation, James remarked, “And I assure you he was right: we were good parents, very good parents. Daddy will always love you, Charlie,” he concluded, his voice breaking.
Eileen then humorously revealed to the congregants that Charlie had been with them at their wedding: inside her stomach! Right there in the middle of a Catholic Mass, she’d confessed to having engaged in premarital sex. I love that about Eileen: she is unfailingly honest and unconcerned with what others might think. Her reason for telling us this tidbit? To underscore the point that Charlie would always be with them—from beginning to end.
As Eileen delivered her eulogy, I moved to the back of the church. I wanted to see how DJ was doing. When I got there I noticed that he and Emily were gone. DJ must have become nervous and asked to go for a walk. I found my cousin, though, who was having a panic attack. He was in the midst of a break-up with his girlfriend, and the funeral had clobbered him. His father had died of a heart attack when he was ten; like DJ, he knew something about loss. Listening to James and Eileen sing a hymn to transcendent love, I felt as if my heart were a stone that had skipped across a pond and was now deciding if it should obey the laws of gravity and sink to the bottom.
* * *
—
After the funeral, my mother hosted a reception at the home of a Ripp family friend. Twice, my father and I walked right by each other: ghosts in different dimensions. By the time of the burial the following day, we were all exhausted. If leaving Charlie at the funeral home had been difficult, leaving him at the cemetery was unspeakably painful, his little white casket like a patch of snow on a field otherwise melted. Before returning to Iowa, I went to lunch at the Ripps’, but I didn’t stay long. I wanted to get back. Emily and DJ had left the day before because DJ had school on Tuesday.
What to say about the spectacle of lost promise, the yawning chasm of what might have been? Driving home, I tried to fancy Charlie as a grown man and, conversely, DJ trapped in an institution with nobody to help him develop. If, as Ernst Bloch insists, oppressive social relations can be analogized as a kind of death, if both phenomena resemble the “wealthy cat that lets the mouse run free before it devours it,” then maybe the only reasonable response to the things we cannot change, such as brain tumors, is to change the things we can, such as unequal opportunity. Doesn’t our mortality, the very ticking of the clock, demand it? How many kids, how many adults, have we failed?
In Bloch’s anecdote, the miner, after being sent back to the mines, murders the millionaire. By Bloch’s logic, however, even the rich man deserves our empathy as he faces death. At seventy, my father, the epitome of wealth, arrogance, selfishness, and emotional unavailability, reaches out for more: more houses, more business ventures, more trips to Scotland to play golf. Now, I’m certainly no miner—I’m as privileged as they come—but I’ve fantasized about “shooting this god down”; I’ve even delighted in my father’s desperation as he runs out of time. Such anger obscures, of course, a profound sadness over the squandering of potential: his and mine, ours together, the world’s at large. At every moment, it could all have been different. As the drivers jockeyed for position on a crowded I-80, each of us lost in our private interiors, I proposed to the air a revolution in feeling, an awakening to the plight of others—both at home and down the street.
A few days later, I asked DJ what he thought of my father. He’d mentioned seeing him at the funeral. “sick,” he typed, “he very much nothing to say.” Was he trying to please me? Had he heard me talking to a friend? Then, in a role reversal of gargantuan proportions, he added, “be. not. hurt by losing. him. we love you very much.”
CHAPTER 15
Reasonable People
The fall was full of disaster. One hurricane after another battered the coasts of Florida, causing tremendous damage to places we knew intimately. If it wasn’t an act of God, as insurance agents like to say, then it was the death of someone close to us. First, Charlie died; then ten days later, Emily’s Aunt Sue died. Not too long after this, the actor and disability activist Christopher Reeve died. His father, Franklin, had been my undergraduate advisor at Wesleyan University, and we’d become very good friends in the twenty years since I graduated. In fact, Franklin had found us our rental at Mount Snow, very near his farm, so that we all might spend time together. Christopher had been an inspiration to so many people with disabilities, and it seemed unconscionable that the fates might cut short the good he was doing. When the son of the man who helped build the trampoline house died, I felt as if we were trapped in a Jobian conspiracy or end-of-days scenario.
Jack’s son, Will, had been having trouble at his group home, and so his parents had put him in a psych ward, hoping that a short stay would allow the doctors to adjust his medications and tame his violent acting out. They’d felt pressure, as the parents of people with cognitive disabilities often do, to intervene dramatically, for fear of losing a treasured placement. While Will was in the psych ward, a doctor injected him with a second antipsychotic drug, though Will had already calmed down considerably with the first. In doing so, he brought on what’s called neuroleptic malignant syndrome, killing him. A twenty-six-year old Autist, with a job and friends and passionate interests, surrendered his life to a medical establishment and, I dare say, a culture that doesn’t understand—that doesn’t want to understand—people with autism. Emily was certain that Will’s acting out had been in part a communication problem; something was bothering him, and you needed to find out what it was.
The incident made me think of the awful decisions parents have to make about medicating their children; we live in a positively pill-happy country, embracing a mechanistic view of the brain in which well-being (or its more cynical counterpart, zombied stupor) is only one, two, three, four, five pharmacological interventions away. How to balance respect for scientific advances with a healthy skepticism about this narrow view of human operation, not to mention the economic forces that support it? Emily and I have staked our very lives on a holistic approach, one that honors DJ’s full humanity and, at the same time, addresses the problem of seizures, hemiplegic migraines, and trauma-induced rage attacks.
DJ’s still on the Topomax and the Risperdal. Will’s death nearly paralyzed me with stress about the risks of taking these medications. Thank God we had, still have, a terrific psychiatrist, Dr. Babson, who listened to our worries and helped us to craft a strategy for minimizing the risks. As Will’s case demonstrates, not every person with a cognitive disability has such thoughtful, compassionate care, and even with it problems can occur. The latter point aside, what happened to Will too easily resonated with a larger history of neglect, injury, and exclusion. The pending lawsuit may still reveal an ordinary instance of malpractice, but I’d like to know how much less careful doctors are when prescribing drugs to those with cognitive disabilities? At the funeral, Emily noticed many with such disabilities in attendance, people she’d never seen before in the town of Grinnell. To a person, they sobbed throughout the service, especially when the minister played Will’s favorite music.
