by Clay Byars
* * *
After being “locked in” for what I later learned was two weeks and two days, I woke up. I was not literally asleep at the time. I had been moved out of the ICU and into a private room. It was in the afternoon, after the physical therapist who came to move my limbs around to prevent bedsores had gone. My sister was in the room, when with no warning I consciously lifted my right leg off the mattress. She ran to get my parents and a nurse. But then, she said, I couldn’t or wouldn’t do it again.
I don’t remember any of this. Soon enough, though, I was moving my leg all the time. I do remember at some point being sort of pleasantly surprised at these new movements. I still couldn’t speak, with or without the tracheotomy tube in my throat. Most everyone said it was a miracle, and that now it was only a matter of time before I would be normal again. I almost let myself believe them. It was Will who shocked me out of that. He came into the room at one point and watched me perform my leg trick. He feigned excitement at first, with that same determinedly happy face, then started fidgeting and checking his watch. “Good job,” he said quickly, and left, the same as before.
These abrupt reactions of his probably seem strange. He could feel that I was definitely not going to wake up and be fine, and I suspect it was as unbearable as when he’d first seen me. He may also have slipped into thinking along the same lines as me, that it wasn’t real. He was young. We were young, when this happened. We’d just turned twenty when I had the stroke. He didn’t know what to say, and I couldn’t speak. He left.
Somehow I was able to keep the fear at a distance, or far enough away to keep from losing hope. I didn’t care how I’d come by my conscious movement, only that this thing, my body, was back under my control. Focusing exclusively and with an obsessiveness known only to the bedridden on my leg—and, after a period of days, my right thumb, which came under my slight control—allowed me to stay optimistic. All of my thoughts flowed toward maintaining this control. I have this now. I will not let this go. My thumb and leg became a landscape, a whole world. I let the flow of words around the edges of the room pass into my consciousness. “Only a matter of time … totally normal…”
I don’t remember much from those first few weeks, but I remember an afternoon, noticing the light coming in through the window on one of the lower floors, and knowing that it wasn’t morning. The memory has no particular meaning. It’s one of the few clear snapshots I have from that time.
9
I’ve been driving to weekly voice lessons with Dewin for seven years now. I don’t know how many lessons that is, but at least three hundred. After every one, he gives me a CD with a recording of the session. So I now have hundreds of these CDs, and each holds unique aural evidence of the damage my voice sustained in the stroke. I say “each” but some of them, about twenty, are blank, meaning that the recording device hadn’t worked that day for whatever reason. Dewin is always having to buy new machines. He keeps a lookout for deals.
Listening to the CDs at home used to be disconcerting. Dewin assured me we were making progress, but often my voice would seem not to sound any different. In fact, these private listening sessions could be the most discouraging moments of my week. I found myself despising the sound of my own voice, suspecting Dewin’s kindness and optimistic tone. At times I thought (or feared) that the whole thing was a grotesque case of wishful thinking, both of us allowing my hopes to become inflated because it was less depressing than having none.
At a certain point, after a couple of years of this, there was a subtle change. I knew something was happening. I knew not because of what I could hear in my speech but by how others interacted with me. I wasn’t asked to repeat myself as often. One night a childhood friend invited me to a dinner party at her house, and I was surprised to find myself talking at moments with the whole table, having grown accustomed to locking in with the person closest to me, never quite sure if I was keeping them from other conversations.
My relationship with Dewin grew easier and more familiar. Gone were the days when in his attempts to get me to be “emotive” he would give me supposedly angry-sounding phrases such as “Dang it!” to sing, and I’d have to stifle my laughter while trying to sound enraged. Now we used expressions drawn from reality. My dog Daisy could be infuriatingly independent-minded. As Dewin pounded a run of notes on the piano, I would sing, “DAI-SY, GET in the FU-cking CAR!” As we got to know each other better, I realized that, like me, Dewin was confident being alone. He described going on trips by himself, and to movies by himself, not in a tone of complaint, but as good memories. I met his mother, a sweet, white-haired Southern lady who showed up at the end of our time one afternoon, in a nurse’s uniform. She was giving Dewin a ride somewhere. They embraced. He had a little dog that he’d sometimes allow to come in during our lessons, and the voice in which he addressed the dog was similar to how he talked to younger students, encouraging but disciplinary.
The session we had in the last week of September 2009 seemed at the time like another step in the slow progression, but listening back I hear that it marked a leap. A few weeks before, when we’d been chatting just prior to the lesson, Dewin had remarked that my voice was acquiring expressiveness, becoming less monotone. The lesson that day started with my holding the word sing over seven notes. The exercise started low and ended as high as I could go. With a remembered fluidity, I could feel my larynx “sitting down,” as Dewin would say. We had to stop after every few patterns to let me clear my throat of the mucus my vocal cords were shaking off.
Dewin told me about his work in the past with a young boy who had a diagnosis of aproxia, a mental disorder that among other things creates choppy and inconsistent flow of speech. He was attempting to strengthen the boy’s underdeveloped speaking skills. “I would ask for him to chop the H and stall the vocal cords against the contained air that the abrupt H creates.” He said it was like a quarterback saying, “Hut!” or James Brown saying, “He’p me!” The boy’s parents brought his speech therapist with them to one lesson, and afterward she told them that basically Dewin didn’t know what he was talking about. She said the way to make an H was to imitate fogging a mirror. Dewin was pleased when my own experience corroborated his theory. We tried Ha-Ha-Ha-Ha-Ha just by itself, without the piano. I’d never been able to voluntarily do this before. My muscles hadn’t been strong enough.
A Russian woman, a massage therapist whom I’d met in passing at Dewin’s, came in right after we started this exercise, and my self-consciousness kicked in. It wasn’t as strong as if she’d been a stranger, but making noise in front of anyone relatively new was still embarrassing. I’d actually been studying Russian on Rosetta Stone since we’d last seen each other. I wanted to greet her in Russian the next time, as I walked out. I thought it would surprise her, and I’d come to enjoy surprising people that way. They met me and assumed I was a village idiot, basically. I liked to keep them guessing.
Dewin handed that day’s CD to me, and I started for the door. The woman and I smiled at each other in acknowledgment, but just as I began to speak, Dewin said something to her. I should have just continued on my way, but then Dewin registered that I’d also been about to speak. He stopped and said, “Sorry. You were going to say something?” My face got hot. I couldn’t think of anything else in the moment. I tensed up and weakly said to the woman, “Dö-brey dyen” (Good day).
She laughed and said, “Oh, yeah.”
10
Telling the story now, it sounds overly hasty, but they moved me out of the hospital and into therapy almost as soon as I started moving my thumb. The people at the hospital said there was nothing else they could do, and the therapists would be best now at seeing how far this recovered motion could be extended, how many parts of my body could be brought back online. My father contacted the rehab clinic, the same place where I had gone as an outpatient after the wreck. This time, though, I would not be going to the main campus but to a separate facility at another hospital, and I’d be arriving on a st
retcher with an oxygen tube in my throat.
The ride across downtown was my first exposure to the world outside the hospital since my stroke. I was truly outside only for the seconds it took to transfer my gurney into the ambulance, but I remember the sudden feeling of the sun on my face, and I remember the change in pressure of the summer air. It should have been an uplifting moment, but for me an uneasy hopelessness shrouded the whole event. There was a sense of something eternal about it. Something about being exposed to the enormity of the outside shocked me from the microscopic focus I’d maintained in the hospital—back in leg-and-thumb world—and into the actual situation I faced. I was fucking paralyzed. The ambulance felt like a hearse.
My therapists—as well as a woman dressed in street clothes, who I assumed was an administrator—met me in my new room when I was rolled in. They were lined up at the foot of the bed like a group of waiters about to sing “Happy Birthday.” I don’t remember anything about this initial meeting, except that the woman I’d assumed was an administrator turned out to be a speech pathologist. My father had contacted her after I didn’t die. She wasn’t one of the regular staff.
Before my new movements had kicked in, my father had already arranged for me to be equipped with a talking computer, the kind Stephen Hawking uses. It was to have an eye sensor I could communicate with. But now that I could use my right thumb, the sensor was no longer necessary. A clicker would be used instead.
The speech pathologist came back the next day with a briefcase. She held up a poster-sized piece of audibly wobbling plastic. It contained four rows of bold black letters and two rows of numbers and other symbols. She said that until my computer arrived this would have to do.
“Let’s give it a try,” she said, pulling up a chair to sit the chart on. “You up for it, dear?”
Since I’d only been able to answer yes and no, my mental condition remained somewhat of a mystery to everyone except me, and Will. I blinked yes over and over. Not that I know Morse code, but at the hospital they’d given me a simple system to work with: one blink yes, two blinks no.
Now I had the alphabet at my command. It had never seemed so ancient and sacred. I actually felt grateful toward it, as a system, for allowing me to get thoughts out of my head. At last I could demonstrate my mental alertness.
The speech pathologist held up a pointer to the poster, and explained that I could guide the tip of it around with my blinks. She would watch me. As long as I didn’t blink, she would drag the pointer down and across the letters. When I blinked, she’d stop.
“Spell out anything you want,” she said. “This is to let your mom and dad see how this works.”
I paused. It was strange to think about what my first word would be. Babies don’t get to do it, don’t have to do it. For some reason, I thought of an experience I’d had when I was eighteen, on the camping-and-hiking trip where I’d first met Eleanor. We were about to climb six thousand feet over a distance of ten miles. None of us had yet become used to the sixty-plus-pound packs we were carrying. Dread and skepticism showed on everyone’s face. Right before we set out, a girl from Connecticut had said, “You know what Nietzsche said, ‘That which does not kill me makes me stronger.’” I’d heard the saying before without knowing where it came from.
The woman scanned down the lines with her finger until I blinked, then she moved across the line until I blinked again. She would call out each letter to confirm it.
“N?” Blink.
“I?” Blink.
“E?” Blink.
“T?” Blink.
“Z??” Blink.
“S???” Blink.
She stopped and looked up at my parents. “Very good,” she said with patently false enthusiasm. “So you all see how this is supposed to work?” I don’t know what she really thought. That I was just randomly selecting letters?
My mother jumped in. “Nee-chee?”
I blinked, as proud of her as I knew she was of herself.
As I spelled out the quote, which began to seem longer than I’d remembered at about the fourth word, they started guessing each word before I finished, which sped things up, but also diminished the effect somewhat. After I finished, everyone just stood there. I realized I hadn’t thought it through. I burst into tears, not so much because I was sad but because it would put a stop to the awkward silence I’d created. But I could see on people’s faces that the quote had impacted them, and I knew they’d be telling others what I’d said. For some reason this made me cry even harder.
When things began to settle down, the pathologist spoke up. “The computer works this same way, except independently. There’s a cursor that moves down the lines, then across the letters. There’s also a feature that lets you enter up to ten different phrases it will repeat by a single click. So be thinking of things you’ll be repeating. We can load them on when the computer gets here.”
Still smiling, she looked at her watch. Then she walked over and picked up her briefcase from the windowsill. “I’m supposed to be at Health South in five minutes,” she said to my parents. “I’ll come back in five to seven days when the computer comes in. Until then, you have my number if you need me.”
She tapped my foot on the way out. “Remember this,” she said quietly.
11
Candy was a tall dark-brown woman who’d worked for one of my previous doctor’s patients. The doctor gave my parents her name. She appeared on the scene sometime in those first weeks at rehab. I don’t remember much about her first day, except that when she approached the bed and looked down at me, she asked, “What’s going on?” as if I could answer. I figured she was another in a line of temporary sitters I’d watched pass, and that may have been the case had I not told my parents I didn’t dislike her.
Candy wasn’t a licensed nurse, but she knew more than a lot of the RNs I’ve dealt with. You could tell she’d been at it for a while. She was a generation older than me and had been a sitter since before she was eighteen. She was open to trying new things and new ways of doing things, but she also treated everything and everyone with familiarity, as if nothing was that new or that big a deal. Her face was always poised for laughter, with a kind of expectant grin, as if she were waiting for a punch line. On her second day she came in to music playing. I’d been given the first Jerry Garcia and David Grisman CD for my birthday a few months before, and had spelled out for my mother my desire to listen to it. “The Thrill Is Gone” echoed down the hall. Candy came in and said, “Hey, man, did you know that’s a B. B. King song?”
I blinked twice.
“When I used to stay up in Alaska, we listened to that stuff all night sometimes.”
Just hearing Alaska—where I’d met Eleanor—made images of her and my time there flood into my head, of hiking over fields of boulders that looked like they’d been arranged by giants, and having to call out “Hey, bear!” as we rounded bends on the caribou trails, of walking out into bright sunlight at midnight and inhaling crisp air. The whole memory seemed the perfect opposite of my circumstances.
Candy nodded, as if she could tell that her mentioning of the place had affected me. “Yeah, Anchorage,” she said. “Your mom showed me your pictures.”
She was quiet. The music played.
“Your boys there ain’t bad,” she said. “Not like B.B., though.”
“I’m free, baby,” she sang, “free from your spell.” I rolled my eyes in amusement.
“I’m sure I’ve got that record somewhere at home if you want me to bring it next time I come.”
Two days later she was back again.
“Hey, man, I finally found it in my attic,” Candy said, strolling into my hospital room—as if nothing else had occupied her thoughts while she’d been away—holding up the record. She set her purse down and came over to my bed to show me. The weathered sleeve had a royal blue background with a picture of B. B. King in a white suit. He was sitting on a wooden stool and laughing, guitar in his lap. Candy turned the record over to let me see
the song titles. She mumbled the words as she read along.
“There we go,” she said. She pointed to “The Thrill Is Gone,” like she’d been briefly worried that she might have been mistaken. “And that first song, ‘Caldonia,’ is where my car’s name comes from … That’s what we call her.”
She was smiling. There wasn’t really anything we could do with the record—she knew my portable stereo didn’t have a turntable to play it on. But that passing moment, of connecting the two versions of the song, had given us both pleasure. In that moment we became more than an invalid and his paid keeper. There was something refreshing—I’m almost tempted to say unique—about Candy’s attitude. She embraced what I was going through in the spirit of a game, one she had a stake in. There wasn’t any pressure over whether I would improve, because not to do so was out of the question. She was patient but insistent. If she’d seen me do an exercise once, she never let me fail to do it the next time.
My therapy then consisted of trying to lift my leg off the mattress, stick my tongue out to my teeth, wiggle my toes, and so on. Candy watched what the therapists did, then she and I would continue the exercises after they’d left. Like her, I didn’t think about what I was doing in terms of possibility or impossibility, just as a stepping stone. My greatest motivator was the fear of staying the way I was. That was not going to happen. As before, in the previous hospital, my attention would become fixated on tracking the most infinitesimal differences in my range of motion. I was aware of the slightest angle change. Weeks went by in the tunnel of these micromovements.
Usually, when we weren’t doing the exercises, I could keep my spirits up, or at least level, in part because I was developing an ability to slip outside myself. Something had changed, right after the stroke. My brain had done what they say brains do: it had evolved.