A Story About Alopecia

We kept reassuring him that it might grow back. What we didn’t say was that his condition could escalate into a more severe form.

For as long as I could remember, my son, Nick, had been missing a spot of hair about the size of a quarter on the back of his head. I assumed it was some kind of birthmark and never really paid much attention to it. When he was 4, a second spot appeared, so 1 asked our pediatrician about it during a regular checkup. The doctor told me that Nick probably had alopecia areata, something I’d never heard of before. She also said not to worry, because many kids with the condition lose small patches of hair that later grow back for good.

asaaA few months later, not only had his two bald spots not filled in, but a new one had appeared. My pediatrician referred me to a local dermatologist, who confirmed that Nick had alopecia areata, an autoimmune disease that affects four million Americans and causes loss of hair not only on the scalp but also on other parts of the body. It was possible, she explained, that Nick would lose all of his hair, or no more at ail. Alopecia areata, she said, was utterly unpredictable. It came and went, as if on a whim. No one understood it–or was able to fully cure it.

This may have been old news to the dermatologist, but it was shocking to me. So was her seeming indifference: I landing me cream to rub on Nick’s head every night, she said it might help but emphasized “there were no guarantees.”

On the way home, looking at Nick in the rearview mirror, I saw a cheerful, outgoing boy. Would he still be that way, I wondered, if his dark, lustrous curls fell out? I envisioned him as a bald kindergartner and worried how he would fit in. By the time I turned in to our driveway, tears welling in my eyes, I’d moved ahead 14 years to his senior prom: Would he have trouble getting a date? Could I protect him at all from being hurt?

My husband, Frank, who lost his hair in his twenties, couldn’t believe how upset I was.

“It’s only hair,” he kept saying as I told him the news that night.

“Yes, but everyone else his age has some,” I repeated. Frank, the oldest of 11 children, and one of the least vain people I know, honestly didn’t understand what I was worried about. Losing hair in adulthood, I told him, is different from losing hair at age 4. Nick’s self-image was still forming, and, this, I argued, could hurt it.

As it turned out, the cream did its job–for a time. Nick’s patches filled in, and he started kindergarten with nearly a full head of hair. But three years later, when Nick was in the second grade, another small bald spot appeared on the side of his head. This time the cream had no effect. Two new dermatologists gave me two new creams. But the spots just kept on coming.

At first they stayed hidden tinder Nick’s still-heavy layers of hair–unless a really strong wind came tip. To keep the gusts from revealing his baldness, Nick, who had never been interested in wearing a wig, begged me to take him shopping for a hat. Though I told him he had nothing to hide, neither of us really believed it; soon we were at the mall looking for his “disguise.” It took hours, but Nick’s final choice was a blue snap-down cap with a neon-green Nike logo in front. He got special permission to wear the hat in school every day, but it wasn’t a magic cure. Instead, it caused new anxieties: Nick could hardly concentrate on his soccer game for fear the cap would fall off. Whenever our doorbell rang at home, he’d fly off to find it before letting anyone open the door.

His hair was now falling out in clumps. Every time I looked at his pillow in the morning, I wanted to weep. I couldn’t deny that my little boy was losing his hair. Hat or no hat, it became a struggle to get Nick out of the car when I dropped him off at school each morning. He resisted; he cried. When I pulled away, I would cry, too, knowing that he’d spend the next six hours trying to keep his hat on his head.

“It might grow back,” we kept reassuring him. This was true. But it was also true that the condition might escalate into a more severe form of the disease that would take every hair from his head and body, leaving his scalp unprotected from the sun and elements, his eyes and nose without filters for dust and bacteria. Naturally, we didn’t mention that prospect. We wanted to accentuate the positive; but to a distressed 7-year-old, “might grow back” didn’t do it.

One of many tough moments that year occurred during a day of bike riding I’d planned with a family who lived near us on California’s Monterey coast. With his safety helmet on, Nick was free to enjoy the outdoors as he used to. It was wonderful to watch him racing along the Pacific. But the joy was short-lived. When Nick took off his helmet at the end of the day, it was filled up with his hair. I could tell by the look on his face that he was as startled as the rest of us. I ached for him, but could do little.

About a week later, Nick’s sobs woke me up at three in the morning. I went into the bathroom and found him looking in the mirror.

“I don’t look like myself anymore!” he cried.

I held him in my arms and tried to soothe him. “But you are yourself,” I told him. “You’re still Nick Ratto.”

“No, my new name’s Ugly Ratto! I’m not Nick anymore.”

AFTER PUTTING HIM BACK TO BED THAT night, I lay awake wondering how much my own insecurities might have contributed to Nick’s fears. At that time in my life, I was incredibly busy managing a full-time job as an executive-search recruiter and being a mom to Nick and his two older sisters, Jenna and Shelby. Yet, whenever I put on a few pounds, I felt like “Ugly Ratto” too. What kind of message had I sent to him (or, for that matter, to my daughters) about not accepting your own imperfections?

What’s more, I literally could not say “alopecia” aloud without crying. And even though the National Alopecia Areata Foundation is right here in San Rafael, CA, I hadn’t been to a single support-group meeting. I’d mark the dates on my calendar, then find a last-minute excuse not to go: Nick needs help with his homework. I had a rough day. Don’t like driving at night. Too much laundry. I knew my attitude needed to change.

But Nick’s changed first–on its own–just before second grade ended. “l want to get it over with,” he announced at dinner one night. “Let’s just tell everyone,” he said, “so they don’t keep asking why I wear a hat.”

His sister Shelby, who was in eighth grade and student body president at the same Catholic school as Nick offered to help him talk to their classmates. She also volunteered to have her friend Jon, a popular, athletic eighth grader, accompany them. Nick was thrilled: Jon was his hero. And right then, Shelby was mine.

Joined by the school counselor, Nick, Shelby, and Jon spent a day giving presentations to every class in the school. Shelby would begin by explaining what alopecia areata is. After her talk, kids raised their hands to ask Nick questions. (“Can we catch it?” “Could your hair grow back different? Curly? Green?”) Shelby reported that by the end of the day, Nick was clearly enjoying calling on his classmates one at a time and giving them answers. Dispensing information gave him back some control.

Still, “outing” himself at school wasn’t the same as facing the world at large. I was reminded of this the following summer, when we went to Hawaii for a family vacation. On the flight over, I reprimanded Nick for standing on his seat to get a better view of the movie screen.

“Let that poor boy do whatever he likes!” a woman sitting next to me whispered. Suddenly I saw Nick as this stranger did: a cancer-stricken 7-year-old who’d lost his hair to chemotherapy treatments. I ignored her and made him sit down immediately. But Nick continued getting stares all through our vacation; little kids would point and ask, “What’s wrong with that boy?” It was upsetting to us all, but most painful to Nick. And it made us all too aware that he’d be vulnerable every time he went somewhere new.

At home, we tried to make things as comfortable as possible for him. For instance, when Nick joined a new soccer team, his father went with him to the first practice to explain to the parents, team, and coaches why he didn’t have hair. Once their curiosity was satisfied, the boys went back to focusing on playing the game, something Nick excelled at.

Through all this, I never gave up hope that his hair would ultimately grow back. And it did, partially, several times. Nick’s head would be bald one week and sporting little blond hairs the next. When this baby hair then became coarse and dark, our whole family prayed it was all growing back for good. And when it fell out a few weeks later, we were crushed. The summer before fourth grade, my son went to basketball camp with his eyebrows half gone. By the time school started, they were back in full.

By the time Nick entered fifth grade in the fall of 1998, all of us had stopped reacting to each change with such strong emotion. By then, I had also come to terms with the fact that we could benefit from outside counseling. I found out that a National Alopecia Areata Foundation meeting was going to be in San Francisco that November. I wanted to go, and so did Nick and his sisters. With no idea what to expect, the four of us made the hour’s drive to the city.

It was strange to face a hotel conference room full of people without hair. But I soon realized that these were happy, accomplished adults. I met a woman who had started her own wig business, a man who was president of a software company, and dozens of people with a healthy sense of humor about their condition. Nick’s future started to scare me less.

Nick himself was in his element. A CNN reporter who was covering the meeting asked him what he told people who wanted to know why his hair was gone. “I got in a fight with a lawn-mower,” he replied, earning a big laugh from those standing nearby.

At the last session of the day, when people shared their personal success stories, Shelby, now 17, and Jenna, now 15, both fierce mother bears when it comes to Nick, literally burst into tears. “I’m just so relieved!” Jenna told everyone in the room. Turning to Nick, she added: “I don’t have to worry about you anymore!”

We all still worry about Nick, but no more than we do about each other. Well, not much more. Nick himself was concerned about starting sixth grade in a new, much larger school this past fall. But as he walked out the door on his first day, he said, “You know what? I’m not going to wear this,” and flung his hat right off of his head.

I used to pray for that day to come. Now that it has, I’m obsessed with getting him to use sunscreen where his hat used to be. I keep some in the glove compartment of the car in case he forgets, but so far, so good–in more ways than one.

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