Alopecia: A Love Story

Which would be better, I think to myself, lupus, a fungal infection or something called alopecia? It is January of my senior year in high school and I am leaning my chair back from the long table at which some of my friends and I have been spending our free period doing homework. The bell has just rung and a procession of young men in blazers, ties and khakis is filing past the little study nook in which we sit. I am surveying this passing crowd and they are observing me back. The younger boys give me sideways glances. The youngest simply stare. It’s hard to blame them, I think, as I reach up to smooth down the matted mess of half-lost hair that only slightly covers the top of my head.

I picture myself posing for a family portrait, back in the fall of this same year. I am crouching out behind my old middle school in the airy meadows at the back of the campus. It is here that my family and I come—not every year but most years—to get family portraits done. There is a breeze that lifts the late-October leaves, already an array of colors from the quick cooling of the imminent New England winter. The family is arranged carefully. My father stands behind us, his grey-black hair trimmed short and combed from right-to-left. He rarely accomplishes a smile in pictures but on this day, we’ve caught him in an especially determined mood, his cheek muscles more willing than usual. My mother is to my left, her arm thrown around my shoulders. Her face is beaming and her short, boyish haircut which she dyes dark brown every month, is slightly ruffled in the wind. My sister flanks me on my right. Her curly hair has been tamed today and she smiles, her hands clutching the family dog, Cocoa, a Cockapoo whose fur has grown lighter with age, fading from a dark chocolate color to a yellowing cream, so that her name no longer describes her.

And there I am, front and center, smiling too. My blazer, grey shirt and blue tie are orderly and sharp. My features match my clothing. The facial hair, which has slowly been growing in, has been freshly shaved. Above, my hair is long, dark, brushed back. It’s thick and full and dangles a short way down my neck and its ends sport the slightest hint of curls. I am happy in this picture. I feel handsome.

But with the arrival of winter, my hair abandons me. The process begins slowly. In the shower, after shampooing, I find more hair than normal has collected in the drain. At first, I think little of it: hair dies and the shower is its appropriate resting place. Yet, with each new shampoo, more and more collects until finally, one on fateful shower, the drain clogs. I look down at the tangle there and run my hands through my hair. They come away dark with dead strands. I have no explanation for this and, after informing my mother, we embark on a research project, sitting side-by-side in the kitchen, searching through the intimidatingly huge Merck Manual of Family Medicine. After some reading, we narrow it down to three options: Lupus, an inflammatory disease that runs in my family; a fungal infection in my scalp; or alopecia areata, which I have, at this point, no idea how to spell. Doctor’s appointments follow, first to my pediatrician.
By the time I make the visit, my hair is noticeably thinned. The sides are ragged and look as if I’ve been clawed by a startled cat. The back is worse with large patches missing, large swathes having committed their bodies to the shower drain. It’s clear something is wrong and my doctor, brushing my scalp and extracting a clutch of dark hair, mutters something under his breath. I sit uncomfortably as he inspects my skin for the scalely growths that typify lupus. Finding none he gives me his verdict: definitely an infection or alopecia. See a dermatologist.

The feeling in the waiting room at the skin doctor’s office is different than that for primary care. The walls are the same bland maroon and white. The chairs have the same scratchy, cloth feel. Even the magazines are the same. But there are no simple check-ups here. In this waiting room, everyone has a problem that needs addressing, some treatment that needs doing.

My mother sits next to me but we don’t talk. My hair has deteriorated further: maybe 40-percent gone. What is left hangs limply in place and I try not to touch anything neck up for fear that more is already dead and just waiting for an excuse to fall. A nurse calls my name. I stand and pass gingerly through a large glass door. I’m ushered down the corridor and enter a room with bright, stale lights that glow frighteningly white against the also-white walls. Before me stands the examination chair, uninviting, intimidating. I sit down.

After a light knock, my new dermatologist enters. “Brian?” She asks as she opens the door. She is a rather young woman with carbon black hair that hangs to her shoulders. She has small facial features. Her hands are incredibly petite and soft and I wonder, as we shake hello, if soft hand skin is a prerequisite for all dermatologists. As she inspects me, she asks about my life. Family? Brothers and sisters? How’s the college search going? Plans for the future?

“Oh,” she says as she runs her hand through my scalp, not expecting to free as many hairs as she does. “Yes. Alopecia.”

She is gentle with the explanation: an autoimmune disease that causes my body to attack and kill the roots of my hair. Evidently, it’s common though I have never met anyone else with the condition. Relatively common. She explains that, rather than alopecia areata, which is technically hair-loss in one single patch body, I have alopecia totalis, or alopecia affecting the entire scalp. Unlike male-pattern baldness, this kind of hair-loss is often temporary, striking for a short period of time—especially during periods of high stress—then subsiding, allowing hair to regrow. Or it can be permanent. There’s no way of knowing. Also, there is another form of alopecia, one with another fancy name: alopecia universalis i.e. hair-loss all over your body. There are, she says, treatments but I don’t listen as she explains them. My mind has retreated deep into the back of my head and all I hear are echoes, as if I am watching myself listen. Could be permanent. There’s no way of knowing.

Receiving bad news, especially bad medical news, is a rare terror but receiving a diagnosis that has the potential to be permanent is especially jarring, as if the life you led before that moment has suddenly ended and a new, changed life has begun. Though I didn’t picture it as such at the time, looking back on that moment, surrounded by those offensively bland white walls, engulfed in that terrible chair, I was being told that I was no longer the brown-haired boy from the family picture. I was now something new, something not myself. I feared many things about this new life. What would my friends think of the new me? What about girls? How will I meet new people? What will they think of me? What the hell?

I shave my head. The day after my dermatologist visit, I go to see the barber who has been cutting my hair since I was ten years old. I enter the shop quietly and sit in one of the chairs. Around me, the same walls decorated with classic sports memorabilia, Italian and Irish flags and, over on the front counter, the same obligatory bin of lollipops but it feels different or perhaps not it but I: I don’t belong here anymore?

When he calls me, I rise and approach. I sit and open my mouth to explain my situation but the barber interrupts me.

“Alopecia?” He says more than asks. He uses an understanding tone that jolts me momentarily out of both my embarrassment and self-pity. All he says is that one word, that embarrassing word, but from his mouth it sounds calming, reassuring and this brings me back from both my self-pity. And his eyes say this: “Ah, I’ve seen this before, not the worst thing in the world, let’s fix you up.” He shaves my head down to the stubble and the bald spots that had been covered by my remaining hairs are suddenly revealed. They stand out stark and pale, like prisoners blinking after being de-hooded. I stand to pay him for his work.

“No,” he says. “This one’s on the house.”

I almost cry, at hearing this, but I don’t—I can’t—and instead I thank him and shake his hand and make my exit. The air is cold against my newly naked head; winter is an unsympathetic thing.

Later that week, I invite my friends over to my house. We gather in my bathroom in a small circle. I take shaving cream, a razor, and aftershave from their respective cabinets and, kneeling in the center of the circle, I lather the top of my head with the shaving cream. There is a picture taken of me, my head covered with foam. In it, my eyes are angled up at the camera and my face playfulness. I betray none of the uncertainty and absurdity that I feel. My friends take turns shaving off the last bits of hair. The boys work quietly. The girls laugh. I cringe as the aftershave is massaged into my scalp. It’s almost religious, this purging, and when the job is done, I am recast—I think for good—as a slightly younger version of Mr. Clean. I am told that I have a nicely shaped head. I am complimented on the smoothness of my scalp. But looking at my new reflection in the mirror, I think to myself, this can’t be permanent, this isn’t me, and I fear what’s to come next, fear going to college without hair, fear making new friends as the new me.

I begin treatment. Every month, my dermatologist fills up a syringe of liquid steroids, used to stop the swelling in my scalp, and injects it into the top of my head. At the top of the scape, the needle barely hurts—each injection feels more like blunt pressure than a puncture of my skin—but when she gets down to the area around my ears, my neck, the injections make me gasp. I quickly learn to press the thumb of my right hand into the palm of my left, diverting some of the pain away from my scalp. After each session, I am uncomfortable for the rest of the day. The steroids pool under their entry points and make my head appear lumpy until the liquid dissipates under the skin. Touching these mounds makes me nauseous and my head throbs with physical exertion. Unpleasant describes this process lightly but routine makes it easier. I get used to it. And soon we see results. Miraculously, hair starts to grow back, at first in patches then in chunks and, finally, across most of my scalp. As the new hair grows, first into stubble then into actual strands, I begin to resemble my old self. For spring break, my friends and I get to go to the Bahamas and, in the pictures we take, I rub my hair. I joke and laugh and look like me. At graduation, there is a picture of me receiving my diploma. In it, I am turning towards the camera, my smile wide.

In the fall, I become a freshman in college. I have a full head of hair and look, what I consider to be, normal. The beginning of the year is an exciting time of meeting new people, making new friends. I jump quickly into a relationship with another freshman and, within the first month of school, she makes me her boyfriend. I feel fresh, carefree, happy but as winter arrives my hair again abandons me.

This time I don’t need to wait for the shower to notice the hair loss. It comes quickly and without warning: a uniform dwindling over the whole of my scalp, the amazingly efficient ruining of all my dermatologist’s hard work. But this time, my alopecia doesn’t stop there. This time. This time my eyebrows thin and die. My eyelashes whither. My body hair drops away. What had been alopecia totalis has now become alopecia universalis, or alopecia affecting the entire body.

Panic sets in. My girlfriend. What will she think? I ask her friends what she will think, too afraid to ask her directly. They say she won’t care. I don’t believe them. I hide. I ask other friends, who give me the same answer. Finally, I ask her to meet me in my room so we can talk. I sit her down on the end of my bed and turn off all the lights but one, trying to set a serious mood. I sit too. Eye contact is impossible. As I explain it, I feel like I’m letting her down, as if this new development in the saga of my alopecia is as much of an embarrassment to her as it is to me. For a while, she listens patiently, rubbing my back then finally, blessedly, she interrupts me.

“It’s all ok,” she whispers. “You’re still Brian, the same Brian. My Brian.”

I no longer remember exactly what follows. Perhaps I cry, overwhelmed with a mixture of confusion, sadness, relief. Perhaps, why lay together. Perhaps, we go get food. It doesn’t matter because the point is that it is ok, actually ok. Later, I explain my disease to my friends and their response is the same. Less back rubbing but the same idea.

It comes time to shave my head again and another party is arranged. We gather in one of the dorm’s shared bathrooms. To my amazement, a number of my friends have decided to shave their heads as well. Solidarity is a comforting thing. We pull chairs into the bathroom and set them in front of the mirrors like a makeshift barbershop. I go first and my girlfriend takes the clippers, stripping the surviving hair down to the stubble. Then she works the shaving cream over my scalp and carefully passes the blades through the foam. Someone takes a picture of her kissing me. In it, the job is half done. She holds the razor out above my head. The edges of her mouth smile as she presses the center of her lips to mine. Next the rest of the group is shaved. Everyone laughs as their bald scalps are revealed. Most have terribly shaped heads—ridges in the wrong places, crevasses between the ridges—but no one says they regret the solidarity, at least not to my face.

Again, I expect things to change with my new appearance but little does. My girlfriend remains my girlfriend. My friends remain my friends. I remain, it seems, myself. I meet more people. On occasion, new people I meet ask about my condition, usually after the third or fourth meeting. I am practiced with my explanation by now: I have an autoimmune disease called alopecia that kills my hair follicles and makes my hair fall out. They usually nod after hearing this. Some compliment me on the roundness of my head or how soft my hairless skin is. And yet, in my private hours, when I’m alone, brushing my teeth in the bathroom or getting dressed after a shower, I still fear the permanence of my condition. I still want to return to the smiling, longhaired boy from my family picture.

I begin treatment again, this time using an oral corticosteroid called prednisone, which suppresses my autoimmune system. The regiment calls for seven pills taken once-a-day for four days, then six a day for four days, then five pills, then four, all the way down to zero. Each morning, I set out the small white pills on my dorm room desk, counting them out and noting the dosage on a small sheet of paper. I swallow each pill individually then chased with a mouthful of water then follow with another.

Results again follow: stubby eyelashes, the hint of eyebrows, a wispy hairline, the solitary armpit hair. But what follows too is a barrage of side effects. My abdomen swells as I gain water weight around my belly. My body pours out sweat. My face clogs with acne. At night, my legs twitch as I lie on my back, trying to go to sleep. But most troubling of all, because the drug restricts blood flow to prevent the swelling in my scalp, it also slows the flow of blood through out the rest of my body and I find myself unable to maintain an erection. This is a strange sensation and an even more awkward thing to discuss with my girlfriend than the original alopecia but I continue, dismissing these side effects as sacrifices necessary to regaining my identity.

It happens late one night when I am lying in bed, kept awake by the twitching of my legs. It has been two years of alopecia. Two years of hair loss, confusion, treatment, regrowth and more loss. I am tired and, as I look back over the whole saga, I realize that none of what I had originally feared has come true. No one, when it came down to it, has really cared about my alopecia. Yes, there had been questions. Was I sick? Do I have cancer? But while I had been so consumed by the sudden change in my appearance and felt that I had so abruptly ceased being really me, those around me continued to see me as I was before. I had changed little to them. I was still the son, the brother, the friend, the boyfriend, all the things that I had been in that family photograph taken what felt like so long ago and more.

I stop the pills. Within days of stopping, the infant hair falls out again, my progress again lost. The hopeful half of me whimpers in defeat but there is a strange realization as well: I find that, deep down, I expected this failure and now that it has arrived, I am relieved. I am relieved as well when the side effects wear off too: I lose my water weight. I begin to sleep again. And my face clears up and my bloated facial features thin back to their original sharpness. My girlfriend hugs me tightly, whispering in my ear, “I’m so glad to have you back.”

The next month I make another visit to my dermatologist. This time, as she enters the examination room she gives me a hug. We are friends now. She again asks me how I am, noting that my regrowth has again fallen out.
“I am sorry,” she says and her eyes betray palpable pain. She has tried everything for me and has failed to fix me, failed to give me back my old, familiar life, but I nod my head. I don’t blame her. I tell her that it’s ok, that we’ve done our best, but that it’s time to call off the fight.
“Well,” she says after a while. “Perhaps, you’re right. Perhaps this stuff.” She waves her arm over all the tools, the treatments. “Isn’t worth it anymore. Good luck.”
We hug once more before I leave.

In all stories, we look for a moral, something to unify the action and to explain its significance. The morals of my experience are two: First is that people are the most important asset during change. At certain points in life, your body forces changes upon you. In the pantheon of medical possibilities, the changes that mine has forced on me are incredibly small and innocuous—I have a disease that effects only aesthetics—but it has taught me the importance of people. When you face change, look to people for help. They will make themselves known to you, if you look for them. They may be friends—perhaps many of them, perhaps just one, great one—or family or teachers or doctors or a person on an Internet message board or a fellow changer, perhaps someone met in a support group. But they will be there and they will guide you. They will humble you. They will pick you up. And, best of all, they will give you permission to go on with your life.

The second moral is that self-appearance is malleable. We all picture ourselves a certain way and it’s disconcerting when our appearance changes so quickly and dramatically that we no longer look how we imagine ourselves to. For a long time after the arrival of my alopecia, I still pictured myself as the longhaired young man in that picture with my family. Slowly, though, this has come to change. I have grown familiar with my hairlessness and my self-picture has begun to redraw itself. My world did not end with the changing of my appearance and, once I realized this, I realized that I could live with the permanence of my alopecia.

It is the summer after my freshman year of college. I am volunteering at a summer camp at a school in Western Massachusetts run for underserved Bostonian middle schoolers. It’s the first day of the program and we take the kids to the fenced-in pool behind the athletic center. The students have just met me and all they know about me is that I’ll be tutoring them in English during the sweaty afternoons between their classes. As I sit quietly by the edge of the pool dangling my legs into the cool water of the shallow end, one of the adolescent girls swims by slowly. As she spies my exposed legs, very clearly hairless under the glare of the summer sun, she paddles closer.

“Do you shave your legs?” She asks with the easy inquisitiveness that only children can pull off.

Not knowing what else to do, I give her the grown up explanation of my condition: I have an autoimmune disease called Alopecia that kills the follicles of my hair and makes my hair fall out.

She can’t pronounce alopecia, though she gives it a good try. I sound it out for her, but she’s no longer listening. Instead, she motions to her friends, who are all splashing around in the middle of the pool. They swim over and she shows off my legs.

“Look,” she says to them. “He doesn’t have to shave his legs!”

This is an instant hit amongst the group. The girls crowd around, peeking over each other as they bob in the water. They poke my legs and squeal at their hairlessness. The consensus is that they are incredibly jealous. A few climb up on the side of the pool and show me their bumpy hairs.

“See?” They say. “I hate shaving my legs.”

I am speechless and I can do is laugh and smile dumbly.

“Thank you,” I say finally. “Nope, no shaving necessary.”

They all squeal again, laugh at each other and, after one more envious look, swim off to wrestle and giggle in the open water. For the rest of the camp, I am a hit among the young girls and many of the ones who weren’t part of this original group come up later, demanding to see my blessed legs. The boys, though, the boys take a little more convincing.

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[The photo above is of the back of my head]

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