Every morning she stripped down for me to sunscreen her tiny body before horse camp. After a morning of kissing smelly horse bellies and perching atop ornery old nags in her new cowboy boots that barely reach the stirrups, I noticed a new faded patch creeping down toward her buttocks. Her skin was eating the pigment like a cannibal, leaving an empty void; the clutch in my chest yearned to fill it in.
“Do you know what vitiligo is?” her pediatrician had asked me earlier that week.
“No.” The room spun around me.
“It’s what Michael Jackson had. The reason he resorted to bleaching his skin and all the other crazy plastic surgery techniques he tried to even out his coloring.” As she talked, the doctor’s head jerked one-hundred eighty degrees away from eight-year old Emma and toward me, failing to see Emma’s already giant blue eyes growing into oceans.
“Of course, none of the treatments are really any good, and there’s no cure, nothing you can really do about it.” The peditrician shrugged. “But, I’ll get you the referral for the dermatologist at Lucille Packard, and she can tell you about the latest research.”
My hands didn’t know where to go: around Emma’s ears to block out the doctor’s crude words; around Emma’s tiny body to comfort whatever she’d already absorbed; or around the doctor’s mechanical voicebox that had sent lightning bolts of pain to my daughter’s wincing face. So I froze.
“Is it bad?” Emma asked when the doctor finally left the room, my daughter’s eyes like waves ready to crest over the edges.
“No, baby, it isn’t bad.” I walked over to hold her.
On the way home in our dusty Honda minivan where children’s books filled every available surface, I heard again from the backseat, “Mama, is it bad?”
“No, honey, it isn’t bad. I promise. Daddy and I will take care of you and take you to whatever doctor you need to or get you medicine to make sure you are ok.” I ’m not lying to her, am I? I mean, even if this doesn’t have a cure, it’s not like cancer or some other potentially fatal disease. The highway I drove home every day opened up below me as the chasm of information I didn’t know about this condition engulfed me.
“Ok.” The meek voice from the backseat sounded like someone else’s daughter, not the one who’d shared her desires round the clock since we brought her home from the hospital.
Then after some time I heard, “Mama, what is bleaching your skin?” I took a breath after this question, much more typical of the daughter I knew who’d asked for a microscope for her eighth birthday next month, and who wanted to be an actress and a scientist when she grows up.
“Did you hear the doctor talking about Michael Jackson?” I tried to catch a glimpse of her face in my rear-view mirror. “It’s a kind of plastic surgery that he tried to even out the coloring of his skin.”
“I’ll never have plastic surgery.” She crossed her arms in front of her chest, yet her voice still wavered.
“You don’t have to,” I told her. Usually I relished conversations in the car, but this one gnashed at my guts. If only I could’ve seen the thoughts flying across her face. The long silences in between rendered me helpless.
“So, if this is just on my stomach it doesn’t really matter very much, does it?”
“No . . . ” I was sure my voice conveyed the hidden wish that I could make it all just as simple as that. Of course, it wasn’t not really just on her stomach. It was in large jagged-edged spots all over both sides of her torso, as if an intruder were sneaking into her bedroom each night and scraping off uneven sections of her skin with a scalpel. And I couldn’t barricade the door to stop them from coming and taking it. And what I thought was a regularly healing scraped knee might be permanently whitewashed skin. But, I needed to help her believe none of it mattered. Meanwhile, I was already secretly waving it away from her face with an imaginary wand.
Another few miles later she said, “When the doctor started talking about Michael Jackson, I got scared because I know Michael Jackson died.” The elevator floor dropped out of my guts and my face stung raw from a slap. One of those stupid-parent moves where I’d been so self-righteously angry at the doctor for saying all these inappropriate things around my child, I didn’t stop to ask or listen to what she had heard or feared. So, this was what the tears were about. She thought she was going to die.
“Oh honey.” I tried to catch her eye. “Michael Jackson’s death was complicated, but it had to do with drugs and absolutely nothing to do with vitiligo. I promise.”
“Mama, STOP! You scare me when you do that.”
In my grand gesticulations to reassure her, I had taken both hands off the wheel.
This child has always craved positive touch, like hugs, massage and her baby silk pink blanket, re-stitched with a new cotton backing three times by her Grandma. She learned to speak at eleven months to express her demands, and “Mama-hold-you” was one of her first and often repeated phrases. I started her in preschool the fall after she turned two, so I could reclaim my body and hopefully, she would claim her own. Each day for months, the teachers would pull away her clawing fingers entangled around my flesh while she screamed. There was a deep ache in me that knows she always wants more of me than I can give.
My husband and I learned from a support website that many with vitiligo report a spread in the condition after a period of intense stress or illness. Immediately, I thought of the last big fight that she witnessed, the worst ever, just a few weeks before the barrenness of her skin’s topography began to radiate from her hips toward her heart. Our lethal ping-pong match of name-calling, like shards of flying glass across the counter, her whistle-blowing screech to “stop-it!” My guilt for failing to stop when I first saw her come around the corner. We had never fought in front of her before. But, like a fire fueled with a blast of lighter fluid, my anger exploded in the moment—proved larger than my love—and consumed my protective core for her.
After the visit to the specialist about vitiligo, she told her father, “I don’t know why everyone is making such a big deal out of this. I’m tired of talking about it.” She had to listen to the whole spiel with the intern, who repeated it for the the specialist, and then heard me recount the visit to my nervous husband on the phone in the parking lot because he couldn’t wait any longer. I tried very hard not to talk about it any more than necessary.
You can’t win, of course. After the first doctor visit with the pediatrician, I told everyone not to ask unless she brought it up. And then, of course, she promptly told her Grandma that she has “what Michael Jackson has,” as if it’s some kind of celebrity disease. To an eight year-old, I suppose that’s the best way to describe it. But, I worried about the response if she told the kids at horse camp this story.
“Oooh. Michael Jackson’s weeeeird! You have what he had? Are you gonna die?”
I couldn’t even imagine the full extent of what might exude from the mouths of babes—the intentional and unintentional harm they can do.
Yet not merely emotional trauma, but the site of a physical injury can trigger the loss of pigment, the specialist told us. Instantly, I envisioned a rubber room—like the boy in the bubble—where she could no longer scrape up her skin with every bump and fall, not the life I want for her, of course. In fact, her first episode occurred over a year ago when something on her stomach that looked like a bug-bite healed, but stayed white. I noticed, then promptly ignored it.
Late that spring, small, lighter patches of skin around her waistline looked as if layers had peeled after recovering from a sunburn. But she hadn’t yet seen the sun that year. And then it began to spread like a hungry fire eating its way around her torso. Somewhere in the midst of this natural disaster I woke up and realized it was time to see the doctor. For a while, this guilt chewed on me, a slow burn from the inside, gnawing a hole. But then I got stranded on the island of the next worry, and from that distance could see the logic that I couldn’t have stopped the progression of the condition by having it diagnosed earlier; for the most part, it has a “mind” of its own.
I stared at her every day that summer as she tanned, and the de-pigmentation became more noticeable. Every patch of unevenness in her skin tone began to look like a loss I’d never be able to make up for.
Part of me saw each one of her “spots,” as we call them, as a hole I failed to patch with a kiss for the boo-boo and the right kind of princess bandaid. It started when I didn’t take her to the doctor right away and mushroomed when I found out the condition may spread with stress. Our relationship often dissolves into a power struggle. Were her spots a badge of my shoddy motherhood? Growing with every mistake—including my failure to consistently enlist her cooperation in applying all of the steroid treatments. No lack of reason behind these theories diminished their power in my chest or the deep seeds of rot that hollowed me out.
I always tucked her in bed at night, bumping my head on the top bunk where she stored all the beloved stuffed animals because of her allergies. “I love you.”
“I love you more.” She chimed her refrain with wide, challenging eyes.
“I don’t think so.” I rubbed my nose against hers.
“There’s more of you to love.” She smiled.
“But there’s more of me to love with.” I winked at her.
“I still love you more.”
“I don’t think so.” I leaned down to kiss her, and she tangled her arms around me as I pressed my lips against her softest of cheeks.
She squeezed my neck as I tried to sit up. “Can’t you stay here with me?” She whined, batting her eyelashes a bit.
“No, I’ve got to tuck in your sister.” My neck and back screamed at me from the angle she tugged.
“I still love you more,” she said, as she let me pry away from her grip.
“I don’t think so. Good night.” I kissed her one last time and hoped it was enough.
* * *
Vitiligo (vit-ill-EYE-go) affects an estimated 100 million plus individuals all over the world. While vitiligo is not contagious, painful, nor life threatening, it destroys lives through discrimination, misunderstanding, ostracism, social isolation and emotional and mental health issues. The condition can be particularly obvious, thus more detrimental, for darker-skinned people. There is no cure. The Vitigo Research Foundation (VRF) seeks to establish a National Vitigio Day on June 25, with the United Nations to promote education and global awareness of vitiligo. www.25June.org
Emma, now twelve years old, lives with vitiligo by actively building a positive self-image, learning stress management techniques, and hoping for a cure. Her older sister is conducting a fundraiser for vitiligo on June 25 in cooperation with VRF and Cherrise’s Hair Salon here. Emma’s father will compete in an Ironman on June 29 to support VRF. www.vrfoundation.org. All the support our family and the community offers to Emma, as well as her own beauty and resilience, continues to fill my own void with love.