While still in the ICN at Loma Prieta, August had been enrolled in a BAMRI (birth asphyxia MRI) study. As a baby born with a brain injury, he had undergone an MRI, and the team associated with the study conducted follow-up examinations. This team would eventually be instrumental in developing the CritiCool control unit, a device that reduces brain swelling in asphyxiated infants via a cooling cap. These would come online roughly ten years after August’s birth and become standard protocol. In other words, August was born a decade too early to take advantage of this breakthrough.
At the six-month mark, the first week of September, the BAMRI people showed up at our apartment and had no sooner begun their tests with August than they began packing up their tools. They didn’t say why, but I knew. August had the brain waves of a Stone Age boy. Socrates’s dictum “The unexamined life is not worth living” came to mind. For the first time in my life I asked myself if this supposedly universal truth was really true. There was no way in the foreseeable future that August would be able to examine his life. Did this mean that his life wasn’t worth living?
About the time that the BAMRI people visited, a new question arose. Should we medicate, or should we not? The doping effects of the antiseizure drug had to be weighed against the risks he ran if he didn’t take it. August had so little going for him that we didn’t also want to deprive him of the joy he took in living. But we also didn’t want him to die from a seizure or suffer further brain damage. We made a decision. After a number of months, we slowly weaned him off of the medications, and by the last week of September he was drug-free.
For those outside of our household, August’s vocalizations were mere noise. At one end of his sound spectrum was the category Ilene and I labeled Les Misérables. I learned to detect the varying qualities of his crying by pitch and duration. At the other end was the utterance that brought to mind Hélène Cixous’s 1975 article “Laugh of the Medusa.” This piece of poststructuralist feminist theory took on new meaning for me. Either August could remain trapped by a language that did not allow him to express himself or he could use his body as a way to communicate. To claim an identity truly his own meant vocalizing in a mode beyond the confines of the Western rhetorical tradition. And that’s what the laugh of the Medusa was: his voice.
He also made a sound we called “the cry of the blithe pterodactyl.” This was the call of a prehistoric bird soaring high in the azure sky, ascending to heights well beyond comparison with any mundane skylark of Percy Shelley’s imagination. A full-throated and high-pitched shrieking suggestive of Bacchanalian ecstasy, it exhibited a sheer vitality that assured us that August was living in the warm precincts of a cheerful day. The loud, grating cry was the guffaw of anti-reason, of living contentedly in the moment, of enjoying life for what it was rather than always busying oneself with an improvement project. Hearing it, I would think, “Hail to thee, blithe Spirit!”
In October Ilene resumed working at Loma Prieta in the physical therapy department. After she went back, the doctors and administrative staff avoided her. The tension was palpable, she reported. Everyone knew what had taken place, and it seemed no one felt comfortable. At this same time August went to day care. The Child Care Center at Presidio Heights (a pseudonym) was a large, well-run facility, and it was directly associated with Loma Prieta. The staff seemed loving, nurturing, and knowledgeable. “August is a delightful spirit,” said Ada, the lead provider and a young Russian émigré.
By this point I had finished my doctoral work and was teaching composition courses as a postdoc at Stanford. Almost every day I commuted thirty-plus miles one direction, so Ilene usually transported August to day care in the morning. In the late afternoon, she and I took turns picking him up. Every afternoon one of us would carry a portable car seat into the day-care center and then transport him out to the car in it. Often we would find him lying on the floor prone in the center of a U-shaped Boppy pillow (the kind sometimes used for nursing) and contentedly playing with a toy. When either Ilene or I approached and spoke to him, he almost always would acknowledge our voices by raising his head and giving us a big smile.
Over time we noticed that some of the parents of the other children at Presidio Heights were not comfortable with August being there. He was toddler age, but already he was perceived as different—as bearing stigma—because he couldn’t toddle. These parents didn’t want their children to be exposed to someone like him. I am reminded of a line from the cartoonist John Callahan: “Sorry. We can’t have anyone this grotesque in here.” No more than a young child, August already was ostracized. In these parents’ eyes our little boy was the miniature equivalent of the Elephant Man.
These parents wanted to shield their children from “life’s harsh realities”—meaning our son—assuming that he would frighten their kids. But the only harsh reality was the fact that he frightened the adults, not the kids. He became for these parents, as poet and memoirist Lucy Grealy says, “like some Dickensian ghost, imagining that [his] presence served as an uneasy reminder of what might be.” The children, though, weren’t put off at all by August. In fact, at Presidio Heights two little girls his age, Rachel and Isabel, regularly fought over which of them would have the privilege of taking care of him. For them he was a big living doll, but Rachel’s mother didn’t like this and so asked the staff to keep her daughter away from our son. That left Isabel. Over the span of many months, the staff members took about two dozen photos of her playing with him. In one she is putting her arms around him and giving him a full body hug, pressing her heart fully and tightly against his. She has large, sad eyes, like one of the big-eyed waifs in a Margaret Keane painting.
August’s light-and-sound-emitting toys, the kind meant for children up to one year in age, proved as engaging for him as video games are for teenagers. One of the smaller expenses associated with his care was the cost of double-A batteries, which his vigorous play wore down at a breathtaking pace. When we secured him onto his Tumble Forms wedge on the floor and placed one of these toys in front of him, he used his left hand to flail at it with abandon.
The Tumble Forms wedge was a positioning device that consisted of a firm cushion covered in thick, dark-sky-blue plastic. In side view it resembled a gigantic doorstop. After laying August down prone on it we would strap him into place with two broad cloth-backed Velcro straps, each permanently attached to a side. The straps made sure that he wouldn’t fall off the wedge to one side or the other or slide down the slope. His head would protrude over the top edge, and his arms would dangle over the top too. If we placed a toy on the floor directly beneath his head he could reach down and play with it even though he couldn’t see it (on account of his poor vision). Sometimes while strapped onto his wedge August would squeal with delight and jostle his legs vigorously up and down for minutes on end. He was like a swim-lesson child holding the edge of a pool and learning to kick.
One late afternoon at Presidio Heights Ilene came as usual to pick August up and transport him back to the apartment. When she knelt down beside him and said his name she found he wasn’t responsive. His eyelids were fluttering, with the iridescence of a dragonfly’s wings. She hurriedly packed him into the portable car seat, ran out with him, and hauled ass through the two and a half miles of rush hour traffic to the emergency room at Loma Prieta. The ER immediately admitted him, but the nurses had difficulty inserting an IV. Finally one of them got a “stick” into his leg, a physician administered a powerful anticonvulsant, and the seizure abated. From beginning to end, August must have been seizing for at least an hour. He was checked in and spent the night, and the next morning he underwent a CT scan. Later that day, after viewing the results, one of the physicians commented to Ilene about what he saw. August’s brain “looks like Swiss cheese,” he said, “it’s so full of dead patches.”
Ilene and I subsequently feared that this big seizure might be a harbinger of more to come. It had been a few months since we had weaned August off of phenobarbital. Another repercussion of the seizure wa
s that the administrators and staff at Presidio Heights didn’t want him to return, fearing that he would have a seizure and suffer further harm, for which the facility would be liable. Their concern was genuine and understandable, so Ilene and I put August back on antiseizure medication, administering it ourselves in the morning and evening. This didn’t change their minds, though. Even with the possibility of seizure reduced nearly to zero, they refused to reconsider. With the exception of Ada, the lead provider, the staff members who previously had been so warm began emphasizing how fussy August had been, how difficult to soothe when upset. They also began insisting that they weren’t nurses and so were not equipped to take care of him. When we received a final determination letter, we had to consider what to do. If the day-care facility associated with a major hospital wouldn’t take him, no place would.
“We’re terrified something might happen,” said the chief administrator.
And that was it. This was fear speaking, not reason: fear of the unknown. Once the condition for which August was being excluded had been addressed, the fear should have diminished, but it didn’t.
Ilene and I had no choice but to file a lawsuit. By this point we had already entered the dark, pugilistic world of litigation. Months earlier we had interviewed Allan Lerch, a brash pit bull of an attorney who had a deep, booming voice. This meeting was for the purpose of retaining an attorney to sue Loma Prieta Medical Center for malpractice. We signed a document with the verbal understanding that he would ask our permission before making any big moves. But within days he launched a scorched-earth, take-no-prisoners attack. Without first asking for our consent, having an outside medical expert review August’s birth records, or undertaking anything of a discovery process, he filed a lawsuit for an astronomical award—millions of dollars in damages. So squeamish were we about suing that we fired him. Doing so turned out to be a huge mistake; his bare-knuckle approach was just what we needed, but we didn’t know that at the time.
Months later, to get August reinstated at Presidio Heights, we hired attorney Cynthia Godsoe of the Child Care Law Center in San Francisco solely for the purpose of getting our son back into Presidio Heights. With her help we invoked the Americans with Disabilities Act (ADA), a wide-ranging civil rights law prohibiting discrimination based on disability. The ADA mandates that if “reasonable accommodation” can be made, then it must be made. The law established no ombudsmen or enforcement mechanism, however, beyond the lawsuits individuals bring against businesses and institutions refusing to comply. Some people perceive such lawsuits under the auspices of the ADA as get-rich-quick schemes meant to hurt small businesses. For us, though, this was hardly the case.
Godsoe made a few phone calls and filed some paperwork, and long before the case went to trial a compromise was worked out. August would be reinstated, and, under the Medi-Cal waiver, Presidio Heights would be supplied with two special chairs for him to sit in, and he would receive funding for a dedicated aide. As a consequence, August enjoyed full inclusion, and a Presidio Heights staff member, Veronica, a woman in her early twenties, was reassigned to become his full-time aide. If the ADA had not been in place, and had we not threatened to sue, this compromise would not have come about, and our lives would have been very different.
The ancient Greek poet Sappho wrote, “There is no place for grief in a house that serves the Muse.” One day Ilene pointed at August and said, “Look, he’s cracking up.”
It was late on a weekday afternoon in February 2000. August was almost a year old, and just that day Ilene and I had set up house in our new place, a second-story flat on Fourteenth Avenue between Clement and California Streets in the Inner Richmond. It was a move of just seven blocks, but our new home, while older, was much bigger—nearly fourteen hundred square feet compared to six hundred. Our landlords, Hazel and Cathy Fong, had helped by giving us a significant discount on the rent for this other property they owned.
I was breaking down the cardboard boxes we’d used to move our things, kicking them open with my feet. It was a noisy job, and August was positioned on the living room floor nearby, strapped atop his Tumble Forms wedge. Something about the sound of collapsing boxes must have greatly amused him. He was in the throes of the biggest, most immoderate laugh imaginable: his head was up and thrown back, his mouth a big O. He was laughing so hard I was afraid he might hurt himself. In the years to come we found that he liked the sounds of dogs barking, door hinges squeaking, and, on Christmas mornings, the sound of the wrapping paper crinkling. He particularly loved the sound of jingling bells.
It was while living in this flat that I came to appreciate how much August loved his Mulholland stander. He spent a great deal of time in it. The stander was a piece of assistive equipment allowing a person with no muscle control to be positioned in an upright, weight-bearing posture. Whenever he was strapped into it, he looked as though he was standing up straight, and being vertical was good for his digestive system. The bottoms of his feet settled on a metal horizontal platform three inches above the floor. On the device’s underside were wheels, so I could move him around while he was standing. When I rolled him through the flat, he beamed and sometimes squawked.
Imagine setting a small stone statue on a low platform with wheels. Or picture some visiting dignitary on parade—think of the Popemobile motoring slowly up a crowd-lined street with the pontiff standing and waving. This was August as I propelled him through the apartment. The difference was that, instead of waving as a pope would do, August would throw his head around, emitting toddler shrieks of glee and gesticulating drunkenly with his left arm. Humble as these journeys may have been, for him they were Mr. Toad’s Wild Ride.
We toured our long stretch of two-bedroom flat as if we were sightseers. We slowly advanced up the carpeted hallway, around the dining room table, in and out of the kitchen with its ancient cracking linoleum, and then onto the living room’s aging wood floor. Like foreign travelers we drank in the panorama beyond the big picture window, the evergreens across the way, and, through foliage, the traffic of Park Presidio Boulevard heading toward and from the Golden Gate Bridge two miles to the north. Before this magnificent view we would linger, me peering out, reflecting; he giggling, eagerly waiting to resume our holiday. Still in the honeymoon phase of fatherhood, besotted with my little boy, exploring this separate reality, I would rouse myself to resume rolling him forward. Our Mr. Toad’s Wild Ride again underway, we were like two tourists on a big day out, eager to engage in whatever adventure came our way.
When August had just turned two, an electricity crisis was unfolding. Rolling blackouts were darkening California on account of the shenanigans of the now-defunct Houston energy firm Enron. It was a little past noon one day, and the power had just gone out, so I couldn’t work at my computer. In our Fourteenth Avenue flat I would often park August in his Mulholland in the dining room next to my computer. The device came equipped with a belly-level play surface twenty inches wide and fourteen inches deep, and while standing he would play with toys. The tray consisted of thick, clear plastic like Plexiglas, around three sides of which was a half-inch high lip protruding upward to keep toys from falling off. As a game, I would load the tray with about fifteen plastic and metal balls slightly bigger than golf balls, and around the stander on the floor I would position six or seven large metal bowls to catch the balls when they fell off the tray. The balls would make a big sound when they landed in the bowls.
August’s left hand, the semi-usable one, would feel about on the surface of the tray before him, probing to capture a ball. When he would finally pick one up, he’d bring it to his mouth and sample it with his tongue and lips. This was his way of experiencing the world.
Often he would have trouble grasping the balls, and as his hand hunted for one it would send them rolling over the tray, making a noise. The noisier they were, the more engaged he would become, so the faster he’d move his hand around, trying to capture one. Soon they were scattering like billiard balls. One finally would shoo
t over the tray’s lip and into one of the bowls below. A zinger! The sound of the ball hitting metal and circling around the bowl would startle us both. He would stand completely still, seemingly stunned by what he had done.
After a brief pause he would resume playing again, enthusiastically rolling the balls around on the tray. Another eventually would go over the side, followed by a high-pitched reverberation.
“Goal!” I would yell, and he would laugh.
This had become our sport, our way to play ball together. It wasn’t that he knew what the word goal meant, he just liked the percussive chime of the ball hitting the bowl and me shouting the word. Then he would be back at it, furiously rolling the balls. After a few seconds another would go over the tray’s lip, followed by another metallic clang.
“Goal!” I would cry again, and at this he would laugh very hard. I would begin to laugh too because he was so amused, and then he would laugh even more. I loved watching the way delirious joy overcame him, the manner in which he would throw his head far back, the way his body convulsed, his eyes half closed and his mouth agape.
After firing the scorched-earth attorney Allan Lerch, Ilene and I selected another lawyer, Kevin Domecus, for our malpractice suit against Loma Prieta. He was young and relatively soft-spoken, and he initially seemed eager to take our case. After spending over a year in the first phase of the discovery process, reviewing the birth records in consultation with an outside medical expert, he decided to withdraw. He didn’t tell us why, but by this point we had begun to do research and had discovered that California is a “capped state.”
We were learning about how litigation works. If we were going to take legal action, whether to obtain monetary damages or just information, we were going to run into the brick wall of the Medical Injury Compensation Reform Act, or MICRA, which had been signed into law in 1975 by Jerry Brown the first time he was governor. It was the doctors’ lobby and the insurance companies that pushed for passage of this legislation. Presented as a measure to limit frivolous lawsuits, MICRA had imposed a cap on pain-and-suffering damage awards, one that may have been reasonable back in the 1970s. This was one of the first laws of its kind, and many states now impose similar caps. However, the California legislature had never adjusted the cap for inflation, and so over time it had become a draconian limitation. Lawyers taking birth injury cases do so on a contingency basis, meaning they don’t require litigants to pay a retainer in advance. Rather, they accept a fixed percentage of the recovery (the amount of money the defendant pays to the litigant) should the suit be successful. In other words, lawyers’ fees come out of the assets the court awards. In doing so, however, attorneys are taking a risk, because litigating a birth injury case can cost them hundreds of thousands of dollars. As a consequence of MICRA, which severely limited what they could be paid out of the recovery, lawyers in 2001 were walking away from such cases even if they had a reasonably good chance of winning them. “Reasonably good” was not good enough: the profit margin had become too thin, and an attorney had to be almost certain of victory to take on such a case.
A Life Beyond Reason Page 5