In the Grand Scheme of Things

What one mother learned after she discovered her daughter had albinism.

Hana Schank | From ‘The Edge of Normal’ | June 2015 | 11 minutes (2,634 words)

 

The following is an excerpt from The Edge of Normal, Hana Schank’s story about what it’s like to raise a child with albinism, a genetic condition whose most striking characteristic is white blonde hair and pale skin. Many people with albinism are also legally blind. Writes Schank, “The story is not just one of life with an unusual special need, but also the story of how I’ve changed, and continue to change, as I help my daughter navigate the world.”

* * *

Two weeks after the pediatrician had introduced the word “albinism” to my vocabulary, my husband and I sat in the stuffy waiting room at the neurologist’s, gently rocking my daughter’s car seat. This was the man who would tell us what was going on with my perfect-imperfect daughter. There was still a chance the pediatrician was wrong. After all, everyone else agreed it was probably nothing. Or a brain tumor or cancer. Those were also things that could cause nystagmus or visual impairment. But it was probably nothing. Or albinism. Or nothing. It was probably nothing.

The day before had been my birthday, and as I’d lain in bed nursing Nora I made a birthday wish that she make eye contact with me. Look at me, look at me, look at me, I’d chanted in my head. She looked up, she looked around, her eyes did their weird back-and-forth movement. Look at me, look at me, look at me, I willed. I will take back all other birthday wishes, I will never wish for anything else again for the rest of my life if I can just have one second of eye contact. And then, she looked at me. Just for a second. I don’t know if I imagined it or willed it into being, but she looked straight at me, blood rushed to my head, and had I not already been lying down I might have passed out. So maybe it was nothing.

“Which one of you is the patient?” asked a gray-haired woman sitting next to me. We were the only people there with an infant. Everyone else who was unlucky enough to visit a neurologist seemed to have already lived a reasonable chunk of existence.

I pointed to my daughter, bundled up tightly in her car seat.

“I was hoping you weren’t going to say that,” said the woman.

“It’s probably nothing,” I told her, feeling the need to reassure her that life was just as we had always thought it to be. We lived in a world where infants did not need to visit neurologists and everyone could see.

The neurologist was a man in late middle age, trailed by a flea cloud of students. There were four or five of them, all eager to watch him examine my daughter. He dilated her eyes and then produced an instrument that looked like something an old-timey dentist might have used to apply leeches. This instrument was for looking into her eyes. It wasn’t the right size, he explained. He didn’t have one small enough for an infant, but it would do.

I held onto Nora tightly as the neurologist did his best to clamp her eye open and peer into it. She squirmed in my lap and screamed, arching her back just the way she’d done in the bilirubin box the day after her birth.

“Well,” he said, addressing his students more than me. “In a normal eye there is a foveal pit, and it appears there is one here.”

“What does that mean?” my husband asked.

“I would say this is just a very blonde individual. I don’t see any other causes for the nystagmus, so it should just go away on its own in a few weeks.”

“You mean it’s nothing?” I asked.

“I would characterize it that way, yes.”

There was a sudden shuffling at the back of the room. One of the students had found an eye instrument sized for an infant. The neurologist decided to take a second look. I held Nora on my lap again; this time she put up less of a fight.

“Actually,” he said, drawing himself up and looking at his students, “this is an individual with albinism.”

“Wait, what?” I said.

“I was able to get a good look this time. There’s no foveal pit.”

“Does that mean she’ll be legally blind?” I asked.

“Most likely, yes,” he said.

I let out a sob.

“Well, yes,” he said. “I guess there’s that.”

A few days later Steven, Nora, and I sat in another doctor’s office under an enormous stuffed Pooh bear that had been nailed to the wall. I gathered it was supposed to be fun and whimsical, but there was something menacing about this giant bear leering out at me. We were there on the neurologist’s recommendation, waiting to see a pediatric ophthalmologist who could confirm the diagnosis and recommend a course of treatment.

The ophthalmologist clicked into the room on high heels, dilated Nora’s eyes, and confirmed the diagnosis. There was no treatment, she said. Nothing could be done. Nora would be legally blind. She would never drive. She might need a guide dog or a white cane … or maybe not! Maybe she’d be on the mild end of things. There was really no way to know.

“In the grand scheme of things it’s not so bad,” she said. “I just had an eight-year-old in here with terminal liver cancer.”

* * *

In the grand scheme of things became a popular phrase right after Nora’s diagnosis. That and it could be so much worse. When I told my neighbor about Nora’s diagnosis, she replied with a story about a friend whose kid had an abnormally large head and violent tendencies. A relative forwarded me an email about someone whose kid had just been diagnosed with Angelman syndrome, a disorder only slightly more rare than albinism, that causes severe intellectual and physical disability. A grandmother at my son’s swim class told me about her newest grandchild, who was born deaf.

“They have two kids who are just fine,” she said. “And now this. How does a thing like that happen?”

At first I hated these stories. Of course it could be so much worse, I’d think. But that’s not the point. Your kid is fine. Your kid will drive a car. Your kid will learn to walk and talk and read on the right schedule. Your kid will have the usual range of concerns that now, frankly, appear increasingly mundane and stupid. My kid, well, who knows what she’ll do. And I hated the actions implied by the telling of these stories. I knew that the same people who told me how much worse it could be were going to hang up the phone and immediately go and squeeze their child tight, so grateful for this child whom perhaps 10 minutes earlier they might have been screaming at for spilling Cheerios all over the floor. I hated that my story of loss made them appreciate what they had.

But after a while I realized that everyone was right. It could have been so much worse. And once I accepted this, I wanted to find out just how much worse. I wanted to read as much as I possibly could about specifically what other more horrible thing could have happened to my child. So I binged on stories of the dead and the dying, the disfigured, the disabled. There was no fundraising link on Facebook that I wouldn’t click, no disease that I wouldn’t investigate. I’d disappear down special-needs rabbit holes for hours at a time. Because here was a whole side of life that up until a few months earlier I had never seen before. I’d known, of course, that there were people who weren’t perfect, but they had lived at the fringes of my vision, barely existent in a landscape populated by the able-bodied and able-minded. And now, suddenly, the entire focus of my world had been inverted. I no longer saw “normal” people as the focal point, with blurry disabled people at the edges. The whole world, I now understood, was made up of disabilities. Some people just wore their disability a little more obviously than others.

I thought about my own disabilities, or lack of abilities—characteristics and personality quirks that wouldn’t get me qualified for Early Intervention services but which had affected my life nonetheless. I was wincingly, horribly shy, for starters. In high school my swim coach had asked everyone who wanted to learn to dive competitively to raise their hand. I desperately wanted to learn—I’d been doing backflips into the pool since I was six years old—but I looked around the pool deck and saw only a few hands raised and, too shy to raise my hand, I never joined the diving team. As I’d gotten older my shyness had limited my career options. Sales, account management, community organizing and investigative journalism were all out. So was anything involving calling strangers on the phone, talking to people I didn’t know well, or being friendly to those I’d just met. Over the years I’d learned how to compensate and, to some degree, how to hide my shyness. But it was still there, a constant companion at dinner parties, conferences, and large business meetings.

And while my shyness wasn’t the same as being legally blind, thinking about my shortcomings made me feel some kinship with my daughter. Because there were moments when I looked at my un-seeing baby who had skin unlike mine, hair unlike mine, and eyes that didn’t meet my gaze and felt like someone had beamed an infant alien into my house.

The whole albinism thing didn’t help.

“You don’t mean she has albino-ism, do you?” my cousin asked over the phone. She’d heard about the diagnosis of my less-than-perfect baby and had called to get the story.

She spat the word “albino-ism” out as though it tasted disgusting.

I flinched at the word “albino,” which sounded harsh and offensive. In my short time on the albinism chat boards I’d discovered the correct way to refer to albinos was to talk about “people with albinism” or “PWAs.”

“You wouldn’t refer to a child who has asthma as ‘the asthmatic,’ ” one woman on the message boards explained. “So don’t call a kid with albinism an albino.”

Those without albinism were referred to as “pigmentos,” a term that also bothered me with its avoidance of the word “normal” and its connotation that one must be either a pigmento or an albino, as though my daughter didn’t belong to me but rather to them.

“Well, yes,” I said to my cousin. “Nora has albinism.” Then I explained the implications: hats, sunglasses, low vision, eyes that wiggled.

“You know,” said my cousin, “they say that everything happens for a reason.”

“They do,” I said.

Everything happens for a reason was my least favorite aphorism. It wasn’t that I didn’t want a reason. On the contrary, I’d started making a list of reasons, secret reasons I’d been harboring that made no sense but I worried them over and over again like a loose tooth. I understood that people said everything happens for a reason to make you feel better. You are struggling now, but perhaps you will be rewarded later. You have had this immensely shitty hand dealt to you, but there will be good in it. But the expression had the opposite effect on me. My list of reasons did not include: I needed to learn more about the visually impaired, or, perhaps this will lead to me becoming heavily involved in disabilities rights advocacy. Instead, my list of reasons included all the ways I might have brought this upon myself by being a bad human being.

Reason number 1: I had been too prideful about having blonde hair as a child. I’d been a pale towheaded kid born into a family of dark-haired, olive-skinned Mediterranean-looking people, and it had made me feel special and different.

Reason number 5: my grandmother had cursed me. My daughter was named after her, and I couldn’t help but feel she’d possibly had something to do with this from beyond the grave. She’d been loving and generous but also vain. For my entire life she’d dyed her hair old-Florida-lady blonde. So perhaps I was being cursed for her sins. Perhaps all of that vanity and interest in blonde hair had somehow altered my genes to create a baby so blonde she couldn’t see.

Reason number 23: I was being punished for marrying the wrong person. Or the right person. I hadn’t totally worked this one out, but the statistical likelihood of finding someone else who not only carries a gene for albinism but carries one for the same type of albinism, falling in love and marrying that person, and having a child with albinism was incalculable. There had been other boyfriends and other loves. I thought about what life would have been like if I’d married one of them. Not that I wanted to be married to any of them, but I thought about the trade-off. I could have married one of them and had an unsatisfying marriage but produced a kid who could see. Would that have been better?

When people weren’t telling me that everything happens for a reason, they were saying we’re not given more than we can handle. The first time I heard this I felt a little shock run through my body as part of me called out, see, you’re special! It came in the form of an email from an old friend, who followed it up by saying that she knew this was something I could handle. And so I turned the aphorism over in my mind and clung to it for a few days. I liked the idea that there was someone watching out for what I could handle, weighing whom to give the visually impaired kid to, and deciding that I was strong enough to take on the challenge. This was no longer something unfortunate that had happened to me. No, I’d been selected.

But in the end I couldn’t buy it. I wasn’t special and I wasn’t being punished. I was just experiencing a part of life. And once I realized that, I began to see them.

First was the teenager at the pick-your-own farm not far from our house. People came to the sprawling farm on the weekends and paid money to pick their own fruits and vegetables. Families would drive up from the city and the surrounding area and make a day of it, picking grapes and peaches and eggplants and tomatoes, taking a single bite of fruit and languidly dropping it on the ground as if the food here was free because it grew on trees. Then they’d spread out their picnic blankets and eat sandwiches before sending the kids off to play in a little miniature village complete with a little wooden jail, church, and school. And one day that spring, as we sped down the dirt entrance road past picnickers eating sandwiches and freshly picked fruit, I saw it: a flash of long white-blonde hair. My head swiveled to get a better look, and I saw the hair had come from a group of people in saris. It was a windy day, and the hair flew up suddenly, caught by a gust of wind, as a hand reached out to bring it under control.

“Did you see that?” I gasped. “That kid had albinism.” I wanted Steven to stop the car, but he kept on driving.

“Stop pointing,” he said. “They don’t know we’ve got one too.”

After that I saw them everywhere. A kid with sunglasses, pink skin, and hair that was a little too blond walking down the street past the diner where we were eating omelets. A gorgeous pale-skinned black woman with hair the color of a Sun-In bottle, crossing the street in Manhattan. And two white-haired Asian kids with white canes at the museum. Where had they been before?

The irony wasn’t lost on me that it had taken a daughter who couldn’t see to give me sight.

* * *

DSC_6578Hana Schank is a writer and website usability consultant. She’s a frequent contributor to the New York Times, and her essays and articles have appeared in the Washington Post, Aeon, BBC Travel, Salon, Glamour, The Atlantic’s website and elsewhere. She is the author of the memoir A More Perfect Union, which was a Barnes and Noble Discover Great New Writers selection, and the Kindle Single The Edge of Normal.