Authors: Clay Byars
I've discovered that my body can no longer take the copious amounts of coffee I used to think it couldn't function without. I don't know if that has to do with the stroke. Coffee does affect the central nervous system, so maybe. Tea is how I begin my days, chai, mixed with milkâmy stomach tolerates it. All of this is preparation for sitting at the desk to write. Or read. But when I'm working on a story, my whole day changes, seems to acquire more purpose, and time, along with the idea of myself, blissfully dissolves.
Occasionally I miss the intimacy of a girlfriendâwhen I was starting to walk again after the stroke and kept falling all the time, constantly black and blue, I used to tell people I was in an abusive relationship with the groundâbut I'm not usually lonely unless I'm around other people for too long. Most of the time I'm in a relationship with everything around meâwith the weather, with the woods, with my dogs, with my total environment, to which I pay attention in a way that would have seemed crazy to me before the strokeâand this sustains me. But when I'm in a group of people I tend to feel isolated and damaged and like there's something else I should be doing. Partly it comes down to fear of “putting myself out there,” sure. But partly it's that the only self I can put out there isn't meâis, in fact, hiding me, behind an idea that equates the body with the person.
I don't scoff at this. I fight down self-righteous feelings of martyrdom. I'm as attracted to physical beauty as anyone, and never had to put in excessive effort to at least be noticed before. But the physical is vital in part because it's one of the ways we become compelled to look deeper into one another, and when I'm around women now, I can feel them staying on the outside. My altered body and head-injury voice are just confusing to many people. Women who do take the time to engage seem to see me as a safe way to avoid loneliness. The combination of beauty, effortless confidence, and the willingness to look beyond seems to exist only in my imagination. And something else: the experience of being constantly judged by others has made me see others more incisively, or at least pay more attention to them, with the result that take-what-you-can-get-and-run dating holds no appeal for me. It's all or nothing, so essentially that means nothing. I don't make myself available, so I can't be rejected. If that means the absence of a sexual relationship, then so be it. As Frank Conroy says, “There is more than one way for the scales to fall from a man's eyes.”
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My blood pressure eventually stabilized, and I somehow managed to beat the odds. I, of course, had no idea I was supposed to have died, but all I could think about upon hearing the news was the difference it would have made had I known this. This thought scared me more than anything else. Although I hadn't known that the outlook was so grim, I knew something was up by the somber mood everyone suddenly began to display around me. Right after this change, my parents let a couple of their Catholic friends bring their priest in to see me. As soon as I saw the guy's clerical collar, I burst into tears. I knew my last rites would soon follow.
After the prediction of my death, Will and some of our Sewanee friends waited together over at Amanda's house. They went in shifts from there to the hospital, which my parents never left. Something he just barely remembers from that time, but which was told to me by a friend who was there and thought the incident surreal, was when an older acquaintance from childhood named Kenny King stopped by. When Will and I were in junior high and high school, my mother befriended some of the more wayward kids who passed through our house. Some of them weren't friends with my sister, Will, or meâjust friends of friendsâand one of them even lived with us for a little while. After hearing that an ex-boyfriend of my sister's said my mother was a bitch, another one of those guys broke his nose.
Kenny was three or four years older than us, and the times I'd met him, he'd gone out of his way to be nice. He'd developed a gambling problem rather early in life. After he got out of rehab, he sold cutlery door-to-door to pay off his debt. This was still when it was “amazing” to see scissors that could cut an aluminum can in half. My mother bought four sets of the stuff. He started off commiserating with Will over me. After Will didn't respond, he began to talk about the volunteer work he'd been doing for a place called the Crisis Center, which among other things has a suicide hotline. He said that the week before, some man had killed himself while still on the phone with him. The friend who told me this said he got so worked up by his own story that he started to laugh at its reality. Then he stopped and composed himself. She said it didn't matter, though, as Will's expression never changed.
Upon reassessing, the doctors now said that I would remain paralyzed from my eyes down. I was given a tracheotomy to make breathing easier and a feeding tube attached directly to my stomach. This was also when the months of sponge baths, having someone hold my penis for me while I urinated, and the wiping began. But I no longer cared what happened to me.
(What stands out most about this time isn't that I was unable to move or communicate, or that other people had to guess what I needed. But because I could still feel, the most confounding part was simply having an itch. I not only couldn't scratch that itch, I couldn't tell anyone where it was either. I sometimes will have an itch and not scratch it if I'm otherwise engaged, just to make sure I still can, but the difference between being able to do something and choosing not to and not being able to do it is like the difference between going to a scary movie and being scared for your safety. Eventually, as soon as I would open my eyes after sleeping, I shut them again. This illusory control transformed into a kind of meditative contentment.)
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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 legâand, after a period of days, my right thumb, which came under my slight controlâallowed 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.
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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.”
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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 stretcher with an oxygen tube in my throat.