Why you should care
Because there’s comfort in numbers.
I was pretty certain my 5-year-old daughter needed to meet legendary bluesman Johnny Winter. If you have a child with albinism and meet someone who is a fan of classic ’70s rock, this person will ask you if you have heard of Johnny Winter. I became aware of him shortly after my daughter was diagnosed with albinism.
I’d never heard of him before my daughter was born, but I quickly became a frequent reader of his Wikipedia page, which listed his albums and other credits, including a brief affair with Janis Joplin. I liked seeing that someone with my daughter’s condition had become a rock star, been friends with Muddy Waters and won Grammys. But the part of Winter’s biography that I found most compelling was this: He’d been a heroin addict. Because if there is one thing that screams “normal” when you’re talking about a ’70s-era rock-blues musician, it’s heroin addiction. In the early dark days of my daughter’s diagnosis, I took comfort in the knowledge that one could have albinism and still go on to do all the normal things a rock star might do in the course of rock stardom — even the self-destructive, terrible things.
Albinism is a condition that makes itself immediately known while simultaneously lurking in the corners. It’s the result of a faulty gene that doesn’t produce enough pigment, which results in pale skin, pale hair and impaired vision. My daughter’s hair color is the least of my worries, but it’s the thing that everyone comments on.
Albinism occurs in 1 out of 17,000 people. When you’ve got a condition that rare, wherever you go, you’re the 1.
Let’s say I’m standing on the sidewalk holding my daughter’s hand, waiting for the bus. Or maybe I’m in the grocery store with her and she’s helping me push the cart. Her hair spills out from under her hat, curls around her glasses, reaches down just past her shoulders. It’s the color of a fiber-optic wand, the kind you used to get at the circus. Or maybe more like the color of whipped butter mixed with sugar, the palest yellow, just before you add the milk and flour to make a cake. And here comes a woman, always a woman, smiling at us. I know what she’s going to say before she opens her mouth. There’s no stopping it, and if there’s a good way to respond, I haven’t figured it out yet.
“When I was her age,” says the woman, “I had hair just that color.” Sometimes it’s a son or a daughter who allegedly had hair this color. But it’s always said with assurance and warmth. Us blondies, the woman is always insinuating, we need to stick together.
I smile politely and say something vague and inoffensive like “Really?” or “Wow,” or, if I’m feeling generous, “It’s a great color.” But I’m thinking: “No you didn’t. Not like this.”
Nothing prepares you for receiving the news that your infant is legally blind, but the doctor who delivered the diagnosis clearly hadn’t bothered to go to class the day her medical school was covering how not to infuriate your patients. Nothing could be done, she said. My daughter 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,” the doctor said. “I just had an 8-year-old in here with terminal liver cancer.”
To my surprise, I grieved for this person I’d never met and whose music I’d never really listened to.
Many summers later, when my daughter was 5, we were on vacation in a small ski town in Vermont when I noticed that Johnny Winter was playing a concert down the road. It was only then that I realized I wanted my daughter to meet him. She would meet Winter, and they would be two people with the same condition in the same room. This desire was wildly irrational, but all the same I wanted it desperately. Here was someone legally blind, with long white-blond hair, who had excelled and thrived despite it all. And now he was in this tiny mountain town, where the statistical odds of having two people with albinism in town at the same time were astronomical. Albinism occurs in 1 out of 17,000 people. When you’ve got a condition that rare, wherever you go, you’re the 1. But here we were, in a town with a population of 4,300, and the number of people in the town with albinism was about to double. It was a sign that I needed to put them together in the same room.
I spent a few days working out exactly how I would engineer this absurd meeting. The concert, of course, would be a loud blues-rock concert at a bar. It would also be late at night. My daughter was 5. She didn’t know who Johnny Winter was and she didn’t care. Her bedtime was 7:30.
And then, two days before the concert, Johnny Winter was found dead in his hotel room in Switzerland. To my surprise, I grieved for this person I’d never met and whose music I’d never really listened to. He was 70, which is young to die, but not that young for a blues-musician-recovering-heroin-addict. But I couldn’t help feeling sad about this meeting that never was.
I mourned that my daughter would never meet him, as though there were something important he could have told her. Perhaps there was. Perhaps he could have told her the secret to success despite visual impairment. Maybe he knew the right thing to say to the women who comment on her hair color. Perhaps he would have told me that in the grand scheme of things, at least it’s not liver cancer. And perhaps I would have believed him.