Iask Tommy, out of the blue, how his dad lost his finger—I know he’s told me before in the fifteen or so years we’ve been friends, but I can’t quite remember the story. I send him a text message and he doesn’t respond for a while. The wait makes me imagine the possible ways a boy can accidentally dismember himself. For some reason I dwell upon kitchen knives—a blender, maybe—though I’m not confident I’m on the right track. Turns out, he was six years old and fiddling with a bike chain when the kid on the bike started pedaling. I read this and think it sounds worse than I had pretended to remember. My eyes dart away from the phone, as if the image were on the screen.
I think of the hand, of the index finger that ends at the first knuckle. I try to imagine how a bike chain could have taken it off so cleanly, but eventually concede that it probably wasn’t so clean. I feel conflicted in saying that the thought of six-year-old fingers going through the gears somehow seems better—quicker, I guess—than those of the thick hands of our Little League coach. There may have been a low murmur through our group as he taught us to play t-ball. The coach is missing a finger. I remember one boy asking me, “Did you know…?” Of course I knew. Some kids just stared at it while he tried to correct their batting stance, swung when he said swing.
I made a point of not talking about the finger, indignant from the attention garnered by my own manual deformity: I was born with type B ulnar polydactyly, meaning that I was born with a nonfunctioning extra digit sprouting from the outside of the first knuckle of each of my little fingers. The “type B”-ness of the condition refers to the fact that the digits are structureless, free of bone or ligament, and were therefore easily tied off the day I was born, leaving me with a small residual nub on each of my pinky fingers. These nubs—small, insignificant reminders of an even more insignificant congenital anomaly—were the bane of my childhood existence.
I remember elementary school as something of a constant Q&A, though I struggle now to believe that I’m not just conjuring up all memorable incidents whenever my mind nears the subject. Every new school year, every time the teacher would rearrange the desk clusters, every new classmate or teammate, meant a new set of questions. Consequently, I may have developed something of a (albeit, false) sense of superiority as a kid; the prevalent rudeness of other children in relation to my outward difference was something I swore I would have never stooped to had our roles been reversed. In reality, my delusion of being more mature was likely brought on by the fact that I was often too shy to open my mouth at all, let alone point out someone else’s difference.
All pretensions aside (and what is pretension, really, but defense?), it was a challenge, year after year (it did not stop after elementary school), hearing, “What’s on your finger?”
Or, “What is that?”
Or, “Is that a wart?”
Or, “You need to get your warts taken off.”
Or, “Why do you still have warts?”
Or, “Let me see your warts.”
Sometimes, a girl in class would see my hand and just lose her shit, would say, “What is that? Don’t touch me with that!” I would not have. But what stood out to me was the genuine disgust at the thought of my touching her, the immediate disdain for my body, for what it did accidentally.
Sometimes, a kid would grab my hand, pull it toward his own face, and examine my pinky finger. I was never one to fight or argue with anyone over anything—conflict, or most any attention-drawing, tended to make me nervous—so I usually just sat with my arm extended and under scrutiny, until it was determined, “That’s a wart.”
“No,” I would say, “It’s not.”
“Then what is it?”
There were days when I would take the Q&A home with me. When I was unsure about how to tell people they were wrong when they said it looked just like a wart their brother had once, I would ask my mother to say what the doctor had said. She would tell me again: The doctor said it was an extra finger, popped it right off.
At this point in my life, I hardly notice the nubs any more. Sometimes I run my thumbs up and down the lengths of my fifth fingers, passing over the miniscule bumps that, in all fairness to the millennial youth of northern Virginia, look a lot like warts.
I’ve always enjoyed having a late-December birthday. Maybe it enhances the feeling of moving from year to year with the world. Maybe it’s the added freedom of knowing everyone is trying to enjoy their own holidays and that I’m not expected to entertain much, even as childhood birthday parties go. I’m on the twenty-seventh—a nice spot between Christmas and New Year’s.
I am discharged from the hospital on Christmas Eve, three days before turning fifteen. The wheelchair ride down to the front door is so smooth and comfortable that, in my sedated excitement, I forget how cold it is outside. My body is stiff—no less so than on the day of the operation—and I cannot bend at the core, cannot engage my shoulders, cannot turn, tilt, or crane my neck. I rise from the chair, step toward the car, and suddenly we are alone. My parents help me into the passenger seat of the once-beloved minivan, requiring a slight bow of the head, which I swear almost rips me in half. My dad drives home as smoothly as possible, but there’s nothing he can do about certain parts of the road. We get home, they help me up to my room, and I promptly pass out, only to wake again long enough to take my Percocet, waking again on Christmas morning.
As the frequency of exclamations and questions about my hands became less noticeable to me, it was at least partly because people’s shock and curiosity were being channeled elsewhere. Though my aspirations in baseball were short-lived—I never really bloomed without the tee—I had developed some sense of legitimacy in that I had developed a talent for racing long distances both in swimming and running. The constant interval training—pool or track—was soothing, safe, and gave me a sense of unwavering strength and endurance. But being pool-side, mostly unclothed, for several hours a day left me vulnerable to new scrutiny, a new frequently asked question.
I was at a swim meet, standing behind the block, my race approaching, when another swimmer, who must have seen me stretching, came up and said, “Hey,” looking around, as if we were talking about something highly secretive. “What’s wrong with your back?”
It was not the first or last time this happened, but it struck me as noteworthy because he was a complete stranger. He was not a friend asking if something traumatic had happened to me once; he was not even a teammate. He was just a random kid who saw something weird and asked about it.
I responded irritably to the intrusion with, “Nothing.”
Not taking the hint, the kid followed up with, “Then why’s your spine all crooked?”
For a long time, I didn’t know what people meant (because I could not see my own back), but if I were ever bending, stretching, or slouching in a way that left my back even slightly vulnerable, I would get the question. My always eloquent, if irritably orchestrated answer—“Nothing”—tended to leave people with the same disturbed expressions they had when they asked. It was markedly different from the finger questions—with the back there was horror, concern, pity; people looked at me as if I needed help, as if I were dying.
I asked my friend Joey one day what he meant when he remarked on it. He traced his index finger along my spine, and I felt a wide curve between my shoulder blades.
It was made clear when I was fourteen: I had developed relatively severe scoliosis. I usually describe it that way when I have to explain it—the word “relatively” implying that I might have been just a stone’s- throw from normal, functional, not health-affecting—but in truth, it was just plain, flat-out severe. So much so that, at the time of diagnosis, I was already past the window of physical therapy and bracing, and right on the sill of corrective surgery. It’s called a spinal fusion: they would go in and open the length of my back like a zipper; push, pull, and otherwise straighten my question-mark spine; hook titanium rods to the vertebrae to ensure that nothing will move while the bone graft solidifies; and then sew me up and send me home, effectively paralyzed for Christmas morning.
The first weeks immediately following surgery consisted of compact, static interactions at home. I would wake, almost always in dull, ubiquitous pain, take Percocet, pass out again briefly, try to eat what little I could stomach, watch TV: repeat. There were weeks of this, but my ability to sit up, converse, and function independently increased fairly quickly.
I remember little about the actual stay in the hospital. I remember saying little, thinking little, pressing my morphine button on occasion. My mother describes me as being “stoic” to the point that it was “heartbreaking.” She told me that one of the nurses had commented, “People are usually a lot more vocal about their pain than this.” At fourteen, I was so attached to the idea of myself as an athlete that I went into the entire ordeal with the mindset that it was something I would get through, and then start training again as soon as possible, which according to my surgeon, would be in about six to twelve months. I didn’t feel the need to be taken care of because, to me, this wastraining: an exercise in pain tolerance. Social workers came and went, offering collections of movies, the opportunity to play with therapy puppies. I wasn’t interested. I was there for bed rest and then I’d be on my way to recovery.
At some point during the stay, my friends came to visit. I remember seeing Peter first. I must have said “Hi,” as Tommy, Jake, Joey, and his sister Christine filed in behind him, but I can’t remember anything I might have said or that they might have asked. In all likelihood, I said nothing and they did their best to entertain me. My girlfriend Jessica visited me, adding an awkward spin to our already awkward relationship: we were both fourteen, had never dated anyone, and were constantly nervous being alone together. When everyone else was gone, she kissed me for the first time, although I might have been peeing.
It’s February, two months after my surgery, when my father tells us he has colon cancer. We’re at the kitchen table, where everything in my house happens, and he says, “Whatever you do, do not Wikipedia colon cancer, because I did and”—he’s far away for a moment—“I found a lot of really scary things that aren’t going to happen.” He adds, to my sister and me, “But the good news is you two get to start having regular colonoscopies when you’re thirty-five!” Over the next few months of chemo and surgeries, I reciprocated his little quip with what was essentially the same semicolon joke over and over; he worked in publishing, gave me my writing genes.
I had just returned to school at this point, after weeks of homebound instruction. Tutors had been coming and going with lesson plans forwarded from my teachers—me always leaning on pillows, Dad always reading somewhere in the house. One of them, a young guy who made fun of me when I kept pronouncing Oedipus wrong (“Oepidus”), told me, “Most of the kids they send me to have been kicked out for, like, gang violence, so this”—he tapped the kitchen table and looked around—“this is nice.”
For the most part, I found the tutors entertaining, but sometimes their visits didn’t mesh with my unpredictable sleeping habits or general restlessness. Either due to the drugs, the pain, or the jarring adjustment in activity level, I had become a mild insomniac. To combat this, I committed myself to watching a lot of movies, which quickly evolved into an overzealous commitment to developing an encyclopedic knowledge of films, filmographies, and visual styles—because that was something to be good at, something that could be artistic and conversational in a pseudo-intellectual way. It also made me a pretentious dick.
To compensate for my unspent energy, I started walking—the only thing I was allowed to do—and I did so compulsively. I would take my Percocet, pass out briefly, wake up, go for a walk, watch a movie, repeat; all day, every day. There were five-mile days, there were ten-mile days, there was an eighteen-mile day—the comfort of distance, time, and numbers gave me a purpose, made me feel I was progressing outside of my painstakingly gradual recovery.
My return to school was anticlimactic. My disability was hidden by my clothes, betrayed only by the fact that I was supposed to be treated specially—to leave class early, have a friend carry my shit—which I stubbornly refused, leaving me vulnerable to people patting me on the back or bumping into me, all of which was extremely painful. At some point, to appease a skeptical gym teacher I’d disappointed by being unable to walk the mile at a sufficiently brisk pace, I had to write a lengthy research report about bowling.
People I’ve since forgotten might’ve said to me around this time, “Wow. You’re pretty fucked up. You had those weird finger things and now your back had to get fixed.” Although I had had this thought independently, it struck me as I laughed it off in agreement that it might not be the type of thing someone else had the right to declare.
During this time, I was also enrolled in the confirmation class at our church, which I struggled to take seriously. All high school freshmen in the congregation had to go through it, but I seemed to be the stubborn one in the group—maybe my early dose of real-world-ness had made me a premature skeptic. Nevertheless, while my mother tolerated and humored my low-voiced asides, my father seemed to take the process fairly seriously, or at least to maintain that it had value. He lived with a patient, unforceful faith that never truly rubbed off on the rest of the family.
With both males in our household indefinitely indisposed and my sister away at college, my mother had a lot to deal with, especially in a year that happened to bring a decent amount of snow. On a Saturday morning after an overnight snowfall, I was watching the video of The Miracle Mile, feeling particularly restless as Bannister passed Landy on the homestretch, when my mother called me to come outside. There, I found my friends and their families shoveling our driveway and sidewalk. This should have been the most comforting and validating gesture we could have received, but I felt helpless, broken, emasculated. I said, “Hi,” to my friends, happy to see them—but their presence enforced to me their superior genes, their functioning families, my faulty construction, our inherent handicap.
In the spring that I am seventeen, I have wrapped myself in the comforter from my bedroom and am lying on the floor in my mother’s room, trying to listen to the sound of her brushing her teeth instead of to how empty the rest of the house is. I am on her floor because I have not started the anti-depressants yet and I cannot be alone or I will start crying. In school, I have started taking “bathroom breaks” during Physics because the thought of the vastness and emptiness of the universe makes me shake.
Less than a year after the surgery, I am back in the pool full-time. I place seventeenth in the region in the 500 freestyle; then, at practice, during a timed sprint, something breaks. I cannot finish; I get myself to the wall and get out. My mother and I go back to the surgeon, I describe the pain, describe what happened. “You should be fine.” X-ray: “Fine.” I’m given some stretches and physical therapy exercises to help with the pain. We go back. He sends us for X-rays and MRIs. He reads them: nothing. The next year of my life is chronic back pain punctuated by scan after scan. Every kind of scan. I keep swimming as much as I can, but it’s hard to stay motivated. There is a lump next to my right shoulder blade, which everyone asks about (again), for which I have no answer. I have to do stretches and exercises every day to relax the muscles in my back, or the day will feel much longer.
We go to another surgeon for a second opinion and he shows us how the rods have unhooked from my spine, how the curvature is back, almost the same as before. My mother and I do not look at him. She is able to get out a couple questions that may have already been answered, but need to be asked again. I stare at the X-ray; I don’t usually get angry about things unless I realize how much of my life I’ve lost to them. This poor guy, I think of him now—surgeons have terrible people skills—the guy who’s giving us the news, who’s telling us we need to do the procedure again, has no idea what to say. We are furious, heartbroken. His day is ruined.
Now we’re thinking, of course our surgeon said it was fine. Of course he didn’t see that the rods had come off. Of course there was no mistake. When we ask other surgeons if this is a lawsuit, they essentially say that there are better, safer ways to do the procedure, especially for high activity patients, but everybody will do it slightly differently, so, no. I wonder, again and again, was it his fault? Or mine? Was I too eager to start training again? Did I rush back into my old life too soon?
We go to Johns Hopkins for the surgery this time. We are waiting in the examination room to meet the doctor we want for the surgery. We play it cool when the guy who comes in is a dwarf. My mother asks if he is our doctor.
He is. He shakes our hands, standing shorter than we are, sitting. He smiles a real smile, talks like a person and not a doctor, doesn’t rush to get to other patients. We like him. He explains that he doesn’t want to hook the rods to the spine because reoperation has a greater chance of failure. Instead, he wants to drill them into my spine, where they will not move, ever. We’re okay with this, we’re sold: This is the guy.
We read an article about him later, about how, despite being rejected from dozens of medical schools because of his height, he was top of his class and has an exceptional track record. He was rejected, it says, because the admissions interviewers felt he couldn’t be as helpful to patients because of his disability. Having met him, we know that it is precisely his “disability” that makes him more human, more trustworthy than any other doctor we’ve met.
Finding the right doctor is the only thing that makes us feel confident about doing the whole thing again. Before this, lying on my mother’s floor, the thought of my body’s recoil and relapse—of the rods inside me coming apart—makes me sick. I imagine that they are hot and searing my flesh. My need for medication or surgical intervention or both confirms that I am riddled with error—that I do not work.
My mother is reading in bed, the light still on. I get off the floor, curl at the foot of the bed like a lame animal. She looks up from her book. I do not look back. She offers me a pillow and I take it, fall asleep.
In November, Jessica and I (no longer together) meet up with Tommy, having just gotten back for our first Thanksgiving break from college. In the car, Tommy and I tease Jessica about something or other. The reunion is fun, familiar. As we pull up to a stop sign, Tommy breaks a silence with, “I have an announcement.”
And I, jokingly, say, “You’re gay?”
There’s a long moment in which Tommy says yes, surprised and somewhat hesitant at first, but more and more declaratively as I keep repeating, No, really, no, seriously, struggling to wrap my head around what I’ve just done, Jessica shaking her head all the while (she knew), before Tommy punctuates it with, “Yes, I am actually gay.” There’s a silence, which I try to break by fumbling for an apology, but Tommy understands.
“It’s really fine,” he says. “That’s honestly the best reaction I’ve gotten so far.”
We are still at the stop sign, laughing nervously, almost hysterically.
As my foot comes off the brake, I try to think back to any times I might have said “gay” or “fag,” try to erase them. We ask him questions about the past, about the future, about his boyfriend. Tommy says he always knew.
I ask who he’s told, if his parents are among them. He says he told them just before meeting us. He says his dad is going to need some time, that eventually he went upstairs alone, leaving mother and son to catch up.
I try to say something positive, then feel stupid.
When I asked Tommy, while writing this essay, what he remembered about visiting me in the hospital, his answer was generous: “I remember how bad I felt that you had to sacrifice all that—it was really remarkable how well you were able to hold yourself together with all of that going on.”
It wasn’t quite what I was asking, but I read his answer and thanked him. I didn’t say that I hadn’t always held myself together. I didn’t say that maybe I did some of it to myself. I didn’t say that I could have made it easier for myself if I had been more receptive to people who wanted to help, if I hadn’t been so focused on getting through it alone. I didn’t say that, actually, living with a secret for eighteen years was holding it together remarkably well, especially when he knew that telling it could be even harder.
Ithink of our t-ball coach walking up the stairs in silence, sitting on the side of his bed, his hands resting within one another, nine-and-a-half quiet fingers counting the ways in which our biology betrays us.
I think of my aunt, possibly the unhappiest person I have ever known, who suffered with polio, a club foot and scoliosis, and spent a year of her life on constant bed rest—this was the fifties and the methods of the still-infantile practice of scoliosis correction were far from effective. I wonder if I am like her. I wonder how the rods and I will age together.
I think of my father, who told me once how he was pushed to the ground and broke his wrist; how he went home and told his parents, who said, “You’re fine”; how he went to bed and woke up and told them again that it hurt and they said, “You’re fine”; how he sat through school until someone noticed that his wrist was red and purple and swollen, and how it was finally fixed.
I think of my father and what we inherit, about what carries on. I think about circumstance, and whether it affects life or life affects it, or if they’re the same. I would like for him to tell me how he managed to believe in God, but I think I’ll make do sharing his grasp of language and composition. Everything that goes wrong, every what-if, every bit of time wasted in limbo looking for a new obsession to hang my proverbial hat on is a little more bearable knowing it can be organized, written, and shared. I think that, as humans, we don’t typically get to know the things we really want to know about life, but it is my hope that knowledge will present itself to us just in time.
A month before he died, my father wrote an entry in his CaringBridge Journal—a blog for people on health-related journeys—that closed with: I don’t recommend cancer as a learning tool, but I do feel that in some respects I was blind and now I see.