Monday, October 25, 2021
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At peace with my traumatic brain injury

🕐 15 min read

When I returned to California, I brought my diaries into the backyard every afternoon and read them through sequentially, with the hope of learning more about the years before my brain injury.

I remembered much of what I’d done professionally, and whatever additional information I needed could usually be found on my constantly vandalized Wikipedia page. Here was the story of an awkward, imperious child prodigy who made his own films and became famous much too early; a music explainer who won a Pulitzer Prize; a driven and obsessive loner whose fascinations led to collaborations with Glenn Gould, Philip Glass and Thomas Pynchon. In 2000, at age 45, I was diagnosed with Asperger’s syndrome. In retrospect, the only surprise is that it took so long.

But the diaries offered a more intimate view. Reading them was slow going, and I felt as though my nose was pressed up against the windowpane of my own life. The shaggy-dog accretion of material – phone numbers, long-ago concert dates, coded references to secret loves – all seemed to belong to somebody else.

My last clear memory was of a muggy, quiet Sunday morning in July, three months earlier, as I waited for a train in New London, Conn. It was 11:13 a.m., and the train was due to arrive two minutes later. I was contented, proud of my punctuality and expecting an easy ride to New York in the designated “quiet car,” with just enough time to finish whatever book I was carrying. There would be dinner in Midtown with a magical friend, followed by overnight family visits in Baltimore and Washington, and then a flight back to Los Angeles and the University of Southern California, at which point a sabbatical semester would be at an end.

And suddenly, there was nothingness – until I awoke in an ambulance, my pants down, while two medics went through my pockets, trying to find something that might identify the rumpled, bloodied 60-year-old man who had fallen over.

It was like being wakened five minutes into an induced sleep – “Go on, go on, let the house burn; I’ll be fine” – and I resisted any effort to bring me back. If this was a near-death experience, none of the popular descriptions applied: There were no celestial voices, no light and no tunnel, and no warmhearted, much-missed grandmother waiting for me in silvered first-day perm. I was simply gone, without will or memory; it was as though I’d never been, and I’d not been uncomfortable with the dissociation.

The world reassembled in pulsing pixels. Soon I remembered my name, my birth date, my children and other people who should probably be told that something had happened. And then, suddenly irritable, I thought of my dinner plans. “Well, I’ve certainly enjoyed this meeting and I’d love to stay and talk,” I said to the attendants with an absurd mustered dignity, “but I have to be in New York in four hours, and I really must fly.”

The medics looked at my purpled head and coal-black eye. “I don’t think you’ll make that dinner, Tim,” one said with a wry, apologetic smile. And then I tasted the blood in my mouth, and I remember nothing more until the next morning.

– – –

My injury had begun to announce itself a week or two earlier, in the guise of a stabbing headache and piercing sensitivity to light that I foolishly pegged as my first-ever migraine, a pain that simply had to be borne till it went away. I had returned to my hometown of Storrs, Conn., to attend a high school reunion for all who graduated between the late 1960s and early 1970s, classes that more or less coincided with the rise and fall of the counterculture. Now the lost, high little hippies were respectably advanced in life, for good and for ill; we were retirees, we were grandparents, too many of us were dead; some had left Storrs long ago and never looked back.

Still, more than 75 people showed up, and I had planned my summer around the occasion.

But as the night moved on, I grew increasingly pained, to the point where I could no longer make conversation. I returned to the hotel early and forced myself through the night with Valium and aspirin before catching a ride the next morning to New London and my appointment with the station floor.

Had I made it onto the train, I probably would have passed out in my seat, an old man dozing and not to be disturbed until New York, when I might or might not have awakened. Instead, I was rushed to Hartford Hospital and quickly diagnosed with an acute subdural hematoma, a gathering of blood in the tissues that surround the brain. It was unclear what had brought this on – probably some recent and already forgotten minor trauma that ruptured ancient veins. At first, the doctors thought this might stabilize and resolve itself with bed rest and rehabilitation. But instead, it intensified and thickened to the point where the resultant pressure was squeezing my brain, displacing the right hemisphere a full two centimeters across the midline. I was unconscious at this point, so calls were made and my brother gave permission for an emergency operation.

Brendan Killory, the surgeon who would save my life, had just finished with a stroke patient when he learned that his night’s work was not yet done. At my later request, he wrote about the occasion so that I might have some understanding of what had happened.

“I introduced myself to you just before the anesthesiologist put you to sleep,” he wrote. “You were minimally responsive, but I squeezed your hand and assured you I would take good care of you.

“I studied your brain scans to plan an optimal placement for a small craniotomy – a piece of skull that is removed and then reattached to gain access to the brain – to best access the hemorrhage. After you were asleep and a breathing tube had been secured in your throat, I placed your head in a horseshoe-shaped padded cradle and sketched a 6 cm curved incision on your scalp with a purple skin marker. I trimmed your hair around the planned incision and then scrubbed your head with multiple rounds of antiseptic solutions. I injected numbing medicine into your scalp and draped your head in sterile cloths so that only the thin strip of skin around the surgical sight was visible. The operating room team then paused for a ‘time out’ to confirm your identity and the details of the planned surgery.

“The operation commenced as I incised your scalp and used a power drill to remove a circular piece of your skull. I used a fine scalpel to open your dura, the outermost brain lining, and encountered the hemorrhage, which was predominantly in the form of a solid blood clot. It was under significant pressure and ‘delivered itself’ out of the opening I had created with some gentle prompting using irrigation fluid and suction. I placed a small surgical drain over your brain to remove any fluid that might accumulate around the hours after surgery and reattached your skull with small titanium plates and screws. After I sutured together your scalp, I called your brother to let him know that the surgery had progressed smoothly and that I was cautiously optimistic that you would make a good recovery.”

– – –

I spent the next few days in the hospital, fuddled and becalmed, thinking mostly about the orange popsicles from the vending machine outside my room, food of the gods that I begged from visitors. A lifetime’s modesty was quickly lost, as I was poked, prodded and otherwise explored by earnest young people with bedpans.

I received a call from somebody I love and hadn’t seen in months. She wanted to fly out immediately, but I dissuaded her, insisting that Hartford was, well, a bit of a drag just now. Instead, I came up with the idea that we meet four days later in Nova Scotia, where life was invariably cool and uncrowded and I would surely be healthy again. I was exhilarated after we hung up, and I started to raise myself from my bed – at which point an alarm went off, nurses arrived and I fell back into gray confusion.

August will be remembered as The Month of Watching Television, first in Hartford Hospital and then at a rehabilitation center back in Storrs. A presidential race had begun and was already getting strange. I caught up with the early seasons of “Breaking Bad,” although I had to watch episodes two or three times to comprehend them.

I was amused by the fact that there were advertisements for a drug called Xarelto as well as from a firm offering legal counsel to those who had already taken Xarelto.

I was especially grateful for Facebook, which allowed me to communicate at whatever level my capacity permitted. Personal letters were out of the question and phone calls exhausted me within two or three grunts: On Facebook I could type a couple of sentences for general distribution.

The first post, sent out two days after my fall, along with a photograph of my smashed but smiling face, was not very edifying, but it was all I could do:

“No idea what happened. Waiting for the 11:15 Sunday train to New York from New London and woke up in an ambulance.”

By the time I was awake long enough to sign in again, a couple of days later, there were dozens of alarmed replies, and I tried to be specific.

“As some of you will know, I suffered a traumatic brain injury on July 26. I’m sorry for my tardiness in sharing details – it seemed the better idea to wait until I had a steady evaluation and at least some prognosis about what my future might be. I’m happy to say that I’m doing very well indeed, and a complete recovery is anticipated. It’s been a shocking couple of weeks and I’m still somewhat unsteady on my feet – but emergency brain surgery will have that effect, I suppose . . . “

A rudimentary but easily negotiated system of communication was established: I could simply push the “Like” button to acknowledge notes I received – a way of thanking friends for their care, of reciprocating their affection without wearing myself out. Crafting paragraphs of update took more time and energy than long articles had once demanded.

“Yesterday I walked to the front door of Mansfield Rehab, joined a friend in her car, drove to Tolland for a fine pizza lunch, then returned and walked back to my bedroom,” I posted on Aug. 21. “This would have been suicide as recently as Tuesday, and impossible to have conceived of last week.”

– – –

Only as I grew stronger did I realize how badly damaged I’d been. In the morning, it took me an hour or more to understand that I was actually expected to get up, and then at least another hour to dress myself. I could no longer sit in crowded restaurants, follow a multiparty conversation or stay up even a few minutes longer than body and brain willingly permitted. I reached for words that were not quite there, and some of them never arrived. I could still give ad hoc lectures on my pet subjects and write down most of the phone numbers I had dialed more than twice, but I had forgotten the life stories of friends, the names of their children, the funerals of their parents. When it could be accessed, my brain functioned like a capacious hard drive, but my “software” was tangled beyond belief.

Out of rehab but unable to travel, I went to stay with my friends Wendy, Dudley and their children at Holiday Hill Recreation Center, three miles from the house where I grew up. Holiday Hill is a day camp where generations of Storrs children have spent summers since 1960. It was there that I had learned long ago to swim, to run around a soccer field, to ride a horse and shoot an arrow – and now I was back with the specific intention of getting better, permitted to sleep most of the day and then to join the dinner table if I was up to it.

At the end of September, I was cleared to return to California. In a moment of mad delusion and against all advice, I decided to fly home by myself. Confused and wasted by the check-in process, I forgot why I was in the airport and sat disarrayed, head buzzing and empty, for more than two hours. In the bathroom, I heard my name announced as that of somebody about to miss his plane, and I fled into the crowd, clothing still askew. By the time I got back to my gate, the door was closed, the counter was deserted and I started banging on the fortified metal, howling wordlessly.

Finally allowed onboard, I was the clumsy, resented last-minute arrival, the overloaded man maneuvering carry-on and computer down the aisle, misjudging distances, banging knees and stepping on the shawls of tidily in-place people who had never forgotten their planes.

I had been convinced that the return to my house would envelop me and make me whole once more. In fact, the mix of comfortable familiarity and my own freshly acquired strangeness made me feel more dissociated than ever. There was too much “stuff,” and I could never find anything that I wanted; trips up and down stairs were plotted like military operations, while coordination of my various remote controls – television, cable, DVD, CD – seemed a sadistic, satanic test of memory. I taught myself to be fearfully conscious of every action whenever I crossed a street or caught a bus. Cockiness might be fatal now: I thought of Garry Trudeau’s Doonesbury character B.D. and wondered hypothetically whether I should travel in a football helmet.

One day I got lost on the way to the grocery store and then, already flustered, forgot to grab a basket and wandered the aisles clutching food to my chest before I made a mess with the register scanners, and then lights, alarms and the voice of a robot went off – “PLEASE WAIT WHERE YOU ARE! SOMEONE WILL ASSIST YOU SHORTLY!” – and I couldn’t speak for terror.

I thought of my mother, in the days when her Alzheimer’s was still undiagnosed, and the way she announced, without preface or explanation, that, no, she didn’t want to prepare a Thanksgiving feast in 1994, although the whole family was coming to town and these dinners had been her pride for 40 years. Most grown children revert when they’re visiting home (until that home is suddenly – amazingly – gone for good), but only now do I understand the doubt and defeat she must have felt.

One of my best methods of self-defense became the simple admission that I didn’t understand. Unexpected travel routes, allusive jokes, sudden interruptions and emotional outbursts upended me, and sometimes I needed to ask questions or even protest. More often, patience and an enigmatic smile carried me through until I was back on familiar ground. I started making very few advance appointments; better to gauge the day’s energy level before committing to anything. How terribly boring it is to be sick, to be thinking always about bedtime!

According to the doctors, my body and brain (the two were always lamentably separate for me) will probably continue to heal for a couple of years. After that, I’ll just have to live in whatever is left. At this point, I am capable of pursuing two, sometimes three projects every day, no more, and I try to get them all done in the morning, as I start to slide by late afternoon and it can be hard to keep a thought in my head by evening. On bad days, I feel like the computer HAL shutting down in “2001: A Space Odyssey” and wonder when I’ll break into “Daisy.”

Music still astounds and renews me, although it demands more solitary concentration than ever and I can no longer “swim” in it, as I did from earliest childhood. But I’ve found a new therapy: Part of each day is spent listening to complicated pieces that I know fairly well but not too well – large amounts of Bach, Beethoven’s “Diabelli” Variations and late quartets, symphonies by Mahler and Bruckner, “Die Meistersinger” – and I concentrate deeply, often with my eyes shut. Well-known, technically “simple” works bring pleasure but don’t seem to be furrowing the same neural paths that I sense from more extended challenges.

For most of the past year, I’ve likened myself to a car that was permitted exactly so much gasoline a day. When that was used up, I stopped in my tracks. But now there are days, weeks and even months when life seems sweeter than ever, when the people I love are near, and I will throw a favorite toy to my eager little terrier until she sleeps serenely under my desk. In January, I returned to teach my first class at USC, frightened, exhilarated and grateful beyond measure. My students were kindly and interested, and I could feel my powers surge as they cheered me on, an exchange of gifts. I’m content with what may come next, whatever it is – and I’ve learned that you can do quite a lot in a few hours with a couple of gallons of gas.

– – –

Page, formerly the chief classical music critic for The Washington Post, is a professor at the University of Southern California’s Thornton School of Music and the Annenberg School for Communication and Journalism. A longer version of this article was first published by ampersandla.com.

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