by Ashley P. Taylor
They put me in the museum because I was “special.” I figured that meant beautiful. I probably had gorgeous red hair, a straw hat and a dress with a wide blue sash. Or maybe I looked like Marilyn Monroe—or maybe 12 Marilyn Monroes, all in different colors.
The tour guides always mentioned my “striking” eyes. Big and brown, with long lashes, I imagined. My long neck. The “languorous” tilt of my head. Then the tour would move on to the odd women: the chunky Picassos; the stick-figure Miros. I always felt sorry for them.
One day—I’ll never forget it— a little boy pointed at me and started laughing. “Look at her eyes,” he exclaimed, tugging his mom’s arm. “She’s unique, isn’t she?” the mother replied.
Gradually, I learned what I really look like. My eyes are different sizes and my pupils point different directions. My neck is too long, and I hold my head as if one side is heavier than the other. My face isn’t thin with high cheekbones; it’s round.
And the worst part is that these aren’t things you can hide with makeup or improve on with exercise. This is the whole reason I’m in the museum. The docent still goes on and on about the long neck of the Modigliani, her tilted head, her asymmetrical eyes. “Hey—” I want to shout, “Don’t you like my dress?”
Let’s just say it was the morning after a very hard night. Over coffee, I confided everything to my landlady and friend—well, we tried. She told me, then, that I was like a Modigliani, that that’s how she described me to people. Long necks, I thought, picturing a woman with an angular face and brown chignon, droopily seated, head inclined toward an elbow propped on a chair. I Googled the artist’s name and the long-necked women appeared one after the next. Her two eyes are never the same: one is tilted up or looking off to the side or scribbled-in, as if injured. Sometimes she cocks her head in a questioning way. Other times, she just looks tired, as if she is not bothering to hold herself straight, and her crooked eyes take on a raised-eyebrow effect.
Remarkable what a specific comparison it was. I have asymmetrical eyes, a head tilt, and a crooked smile. But it’s not just my appearance that’s unusual. It’s also the way I talk and the way I walk. Not even the way I think is normal: on an MRI, half of my brain looks different from the other half, and that is really where the difference lies.
At the beginning of that summer, I had to sit for an ID photo at my internship. The two uniformed ladies told me to lift one shoulder, tilt my head. This way? I said. No, the other way. Fix your hair, they said. How? Like you’re in a hurry. I ran my fingers through it, but they wanted me to pat it down. After all the coaching, even I agree that I just look weird in my photo. My smile is tentative, my face is round, and my left eye isn’t looking at the camera. I couldn’t change my portrait even if I wanted to. I’d just be an uncomfortable-looking girl grinning as if to ask, “Am I doing it right?” when she knows that she isn’t. I’d rather be the mysterious lady with the languorous head tilt and asymmetrical eyes.
I was dancing next to a row of drummers in Washington Square Park. A man with dreadlocks who was drinking liquor from a juice bottle touched fists with me and struck up a conversation. He was pretty drunk, he said. I smelled both liquor and beer, and I liked the liquor smell. He told me he was from the Dominican Republic. I told him I was from Maine, and he said, “Ah, Maine. So you are an intellectual. A Democrat. Are you Jewish?” He said he was about to go “Gaga” dancing, and I kept saying, “Have fun,” expecting him to leave. He just kept staring at me. “Let’s sit down,” he said. “I want to speak with you.” We sat down on a bench. He kept asking me to repeat things and laughing.
“I’ve had enough of you making fun of my voice,” I told him, pluckily.
“Excuse me?” he replied. Immediately, I felt guilty, rude, in the wrong, defensive. The man had an accent himself.
“I thought you were making fun of my voice,” I persisted. “You keep asking me to repeat things.”
“I like your voice. You sound like you’re from Texas,” he said, pronouncing it Tex-ahss.
“What do you do?” he asked me. I told him I was a journalist, a writer.
“Yeah,” he started, “but…” and I thought he would continue, “You can’t earn a living doing that.”
“What’re you doing with yourself?” he asked a second time. “You’re special-educated. I can tell.”
“No, I’m not,” I said. I wasn’t.
“It’s not bad,” he said. “You’re special. You see beyond me.”
I tried not to make a scene, not to cry too much, not to act as if I was being abused. I had chosen to talk with him, and he’d actually just complimented me. But a consolation prize was not what I wanted.
The Modigliani lady doesn’t know what she looks like. I know how I appear in the bathroom mirror; I can make my face look the way I expect. But every once in a while, I glimpse how I look to other people. “Your gait is more even when you wear cowboy boots,” my mother observed—the first I’d heard of my uneven gait. “I recognized you by the way you walk,” a ballet teacher commented when we met on the street. Behold the power of a glimpse.
In elementary school, I could recognize one girl by her calves. Rod-shaped and bronze-colored, they ended in white folded-over socks. This girl rolled on her ankles a little bit as she walked, which gave her a gangly appearance, but her tiny nose and flat features made her look simultaneously tough, obdurate. She always reminded me of a unicorn; something about that combination of toughness and fragility. I could spot her by her calves and thought how unnerving it was that such a small patch of a person, a part they don’t even think about, could identify them.
Snap judgments can be useful. On the stairs down to the subway at 8th Street one night I remember passing a guy in a big t-shirt and cargo shorts with a vague grin on his face. Without looking at him all the way, I sensed that he was drunk and was about to ask me if I wanted to go have a drink. And he did say something, and when I kept walking, he continued, “Come on, have some fun.” It seems wrong to judge people on so little, but my instincts were correct.
Another scene, another day. A coffee shop: A hefty man is sighing and shifting impatiently in my peripheral vision, laptop before him on the counter. He puts his flip phone to his face, and, in very proper language, says he is having trouble applying for a job. He is trying to be reasonable, but there is something inherently off about him. He is about to pop, and any hiring manager would see it right away.
On the surface, I feel sorry for the job seeker, but mostly I think about myself. I fear that out of the corners of their eyes, people can tell that there’s something odd about me. Maybe they don’t even look at me all the way because they don’t want to stare. But they don’t need to look at me all the way to tell that there’s something amiss. I don’t want people using their instincts on me.
“Something’s amiss.” “My difference.” I can describe other people’s disabilities. It’s clear when someone has Down syndrome. But I can’t or don’t or won’t describe my own difference in a sentence or phrase, nor can I find acceptable synonyms for it. Deviance, oddity, abnormality—all impart some judgment that I don’t want to make. My greatest fear is that when people look at me, they think that I have a mental problem, like the man in the coffee shop. And what if I do? The difference is in my brain, and I know it.
“Special educated?” No. But maybe I should have been. My former landlady, the same one who told me I looked like a Modigliani, said that my voice reminded her of Temple Grandin. Temple Grandin, Ph.D., is known for her high-functioning autism and for developing more humane ways to treat livestock. Claire Danes played Temple Grandin in a TV movie, which I have not watched.
What I hate about my voice sounding like Temple Grandin’s is that it is fundamental. I’ve heard it described as nasal and, sometimes, as too loud. My first day at a new high school, a very nice teacher took me aside and told me, in front of a row of red lockers, that the school had speech therapy classes. Every once in a while, my mom shushes me at a restaurant. If my voice represents autism, there it is for everyone to hear.
These worries reached a dramatic climax one evening when the landlady and I had a misunderstanding that left us both feeling wounded. She threw a broom down the stairs to the room I was renting and shouted, “You should tell people you’re autistic so that they don’t get hurt.”
You might say, “Wait—threw a broom? Who is this landlady? Don’t listen to her,” and that would have been, I see now, good advice. However, she told me what the night at the park had primed me to hear.
The landlady brought up the subject of autism again over dinner, this time kindly. She said that when I first moved into the apartment we shared, she felt something was “off” in our interactions.
“It’s not something you can control,” she said. “It’s clear—”
“When I open my mouth,” I began.
“No; it’s not your voice,” she answered. Here, I wanted my voice to take the blame. I hate to think that something else is what people are noticing. Whatever it is remains beyond the scope of my words. It’s whatever little kids see when they stop laughing and grow quiet around me. Whatever that is.
I can tell you what I do know about my differences. I was born with a tumor that presumably blocked the flow of fluid in my brain, causing my head to swell and putting great pressure on my new neurons. I had hydrocephalus, or “water on the brain.” In order to drain the fluid, surgeons installed a shunt, a tube with a one-way valve that opens under pressure running from my brain to my belly. I’ll always be dependent on a shunt. When it works, I lead a fairly normal life. When the shunt gets clogged, however, I need brain surgery. These “shunt failures” are my medical emergencies, but the tumor, on the right side of my brainstem, is the underlying condition. It’s the reason I don’t just say, “I have hydrocephalus.” The tumor is the source of my asymmetries and balance problems. It was so large by the time I was born that doctors thought it would keep growing and kill me. The tumor hasn’t grown at all. When my health is good, I almost forget that I have a medical condition, aside from the jolts: “You’re special-educated. I can tell.”
The earliest must have been when a specialist doctor referred to “my brain tumor.” I didn’t know I had a brain tumor, but I did know that my grandmother had died of one. Freckles were tumors, too, the doctor explained, and I decided to believe that my brain tumor was somehow okay after all. I had a lot of specialists, but that didn’t raise any red flags for me. It made sense to me that my mom would take me to a doctor for every part of my body.
Only looking back on my childhood did I see how I was different from the other kids, that I had some disabilities. The thing is, I actually thought that I stood out for being smarter and more talented than the others. When my first-grade teacher asked me if I wanted to take the ramp or the stairs, I saw the ramp as a sort of first-class option: Why not upgrade? It was more fun to run down the ramp without worrying about tripping. At some point I did realize that teachers had certain assumptions about me and my good behavior, but I didn’t think beyond teacher’s pet. Now I have a niggling feeling that the attention I received had something to do with being a student who wasn’t supposed to run around the merry-go-round on days when there was a substitute kindergarten teacher or who might be expected to struggle.
Every shunt failure is a jolt, an unwanted reminder that the normal life I take for granted and even complain about is actually remarkable luck. Many people with hydrocephalus live with more chronic difficulties than I do: headaches, cognitive problems. When I was born, doctors advised my parents to put me in an institution and enjoy me while they could. Even now, doctors will look at me when I’m having a shunt failure, am barely alive as far as I’m concerned, and say, “Wow; she’s doing great.” To them, my emergency symptoms seem within the range of normal for someone with my condition. Someone like me.
When I’m recovering, I start to wonder if it’s true, if this is my normal life after all. Propped up in bed, I touch the bumpy, stitched-up incision, the “hole in my head,” as I call it, finger the soft arc-shaped bald spot from earlier surgeries and feel completely vulnerable. On my feet are rubber-treaded hospital socks that I have volunteered to wear around the house. I feel as fragile as anyone ever expected me to be.
This is the disenchantment of the Modigliani who assumes that people are admiring her beauty, classic beauty, then learns that they are staring at her and wondering what’s wrong.
Then the stitches come out, the hair grows back, I throw away the booties, and I go back to the other normal.
I know how I look to my mom; it is the way most children look to their mothers: just right. To realize that “just right” includes my lazy eye, my uneven gait, my unusual speech, to realize that she loves me despite my problems, not because she doesn’t see them, is the ultimate jolt. It’s like missing a step, one elevated by the height of my mom’s esteem. Even more sobering is how much my differences have affected her life.
One day in the seventh or eighth grade when my mom was driving me to go make an audition tape, I mentioned that I was having headaches.
“Had you forgotten about them?” I asked.
“All I think about is your health,” she answered, angry and suddenly needing to focus in order to keep driving. In an instant, I realized my obliviousness.
In the town where I grew up, there is a children’s fair after the Fourth of July parade every year to raise money for an organization called Special Children’s Friends. My mother helped to found the organization, and her friends, who doted on me, were all involved. Typically, I didn’t think this had anything to do with me. As an adult, I decided to play the fiddle at the fair one year to raise tips for the cause, and at the end of the day, as we were all packing up, one of my parents’ friends mentioned to me that I was really “the poster child” for the organization. I realized that it was true, so true that it had gone without saying.
Every once in a while, Mom, who is not a nagger, fusses at me to try to fit in. It usually involves shopping for the clothes that “kids are wearing these days.” Before my internship started, the one for which I made that awful ID photo, my mother wanted to buy me shoes that would help me fit into the professional world. I felt great pressure to say I liked whatever she did. At one point, in front of a pile of shoes, she told me to pick three pairs, and I did, though I wasn’t crazy about one of them. I felt desperate to choose the shoes that would show that I had good taste, just like the next girl. But I wasn’t musing on how the shoes would look with some new handbag; I was just trying to prove my normalcy and get out of that store.
We were circling around something. The reason it’s so important for me to have the right costume and to blow dry my hair when I get out of the shower, unlike so many bedraggled beauties, is that I’m at a disadvantage in the fitting-in department. I worry that if I protest too much, she will play that card. My mother never plays that card. She may not even think of it as a card, but it is one.
My landlady played it the night she threw the broom.
Everyone has buttons to be pushed and cards to be played. Thus appeals to universality try to resolve the problems of feeling different and feeling blind. Everyone is unique, so individual differences are just one more way in which we are alike. No one likes listening to her voice on the answering machine. Yet in the end, the concept of universal hardship doesn’t make the individual experience any softer. I feel like I have an X on my back, and the idea that everyone is somehow marked is little consolation.
This is not a story of acceptance. I may be slightly less oblivious now than I was before that night in Washington Square Park. I realize that I’m the round-faced lady with funny eyes, not ivory woman on the divan. But mostly, I just see how blind I am, sometimes willfully so.
Earlier, I said that I couldn’t succinctly describe my difference: I have a benign brain tumor and am hydrocephalic. It’s not that complicated. It is an ugly word, though, hydrocephalic—makes me think of an octopus with one eye or a giant squid, a cephalopod, a monstrous creature. ‘Having hydrocephalus’ sounds better to me. I don’t want to go on Hydrocephalus Association walks; I don’t want to identify as a Special Child now grown up. It’s not that I can’t fit into those categories: I don’t want to. I’d rather have my own list of 10 things that set me apart so that I can omit “intellectual disability” from it.
The Modigliani lady really likes being in the museum. She wants to believe that she is special and that bound up in her difference is a certain je ne sais quoi, a certain beauty.
“Stop criticizing my favorite person,” my gentle mom would say. When I think about her smiling face on Skype asking me if I’ve done anything fun today and if I slept well, I feel guilty for being caustic and for picking at my warts instead of enjoying the life she wants “more than anything” for me to be able to enjoy.
How many kinds of blindness are there? Can I somehow be missing something, still: what my one-and-only mother sees in me? Through the filter of love, she sees not what I’m smug about, not what I strive for, not my nose to the grindstone or even my laziness. It’s probably something that I hardly notice, hardly realize and don’t control. I hope so.