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[While seeking additional information about Jon Batiste, I found this sensitively written and insightful article by his wife, Suleika Jaouad. It appeared in Vogue magazine and is dated May 28, 2015. How I wish her story of painful loss from a vicious disease had ended here.]
Hair, Interrupted: One Woman Faces Hair Loss After Chemo—and Discovers the Beauty of Standing Out in a Crowd
BY SULEIKA JAOUAD
For as long as I can remember I've felt like an outsider looking in. Between the ages of four and eighteen, I attended six schools on three continents. As the child of two immigrants—my mother is Swiss and my father is Tunisian—I discovered that my multicultural background was anything but "cool" or "exotic" to my classmates. Roll call on the first day of school was like showing up to class wearing underwear on the outside of my jeans. With a name as unpronounceable as Suleika Jaouad, I found it hard to blend in. Sometimes that made me want to blend in all the more.
Even my lunch box was a source of embarrassment. All I wanted back then was a brown paper bag filled with typical, all American fare: peanut butter and jelly sandwiches, Snackables, Pop Tarts, and Gushers. Was that too much to ask for? I remember bursting through the door after school in a huff one day. "Never, ever pack me chicken tagine for lunch again," I said. The contrast between the smelly, coagulated orange mess of chicken and the pristine, odorless beauty of a PopTart had never felt sharper.
Over time, the embarrassment of being the perpetual new kid hardened into resentment. I resented that my family had a French-only language policy at home. I resented that I had a multisyllabic name and that I was too young to legally change it to something more normal like Ashley or Jessica. And I resented that my mother, an artist with a flair for the eccentric and a sturdy sense of who she was and what she believed, seemed to think it was so easy to be comfortable with not always fitting in. "You are unique," she would tell me, forgetting that the word is a social albatross when you're a kid. I was mortified the day she came to pick me up at the bus stop wearing cross-country skis, a fluorescent-yellow parka, and a backward baseball cap covering her spiky two inch-long hairdo. Quelle horreur!
When I got to middle school and my family settled in upstate New York, I dreamed of having golden, waist-length Rapunzel-like tresses—like the popular girls on the cheerleading squad—instead of my frizzy, shoulder-length auburn hair. I tried everything. They knew me in the hair product aisle at the local CVS pharmacy, but no amount of roasting my hair with Sun-In or dousing it in Long 'N Strong could make me look like them. In the sixth grade, I even persuaded my mother to let me get a braided blond weave (hello, fashion police!).
These were the memories that came rushing back to me on a muggy spring afternoon in May 2011, at the age of twenty-two. Nothing of note was happening in the news that day. But the world that I knew was about to implode.
"Precautionary" was the word the doctor had used. He was talking about the bone marrow biopsy I had undergone a few days before, a fairly painful, invasive procedure that is rarely performed on young people. After two months of flu-like symptoms that seemed resistant to the strongest antibiotics, it had been the next step. My skin had become so pale it looked almost translucent. "Robin's egg blue, as if all of the veins have floated to the surface of my skin," was how I described it in my journal. Something was wrong. This much I knew. But the doctor reassured me that he didn't expect to find anything abnormal in my bone marrow.
By the time my parents and I arrived at the clinic to hear the results of the biopsy, it was dusk. All of the staff and the other patients had gone for the day. The lights in the waiting room had been dimmed, casting an ominous shadow on the beige walls and stacks of outdated magazines. The doctor didn't mince words. "You have something called acute myeloid leukemia," he said, enunciating the diagnosis like a foreign language teacher instructing us in the pronunciation of a new vocabulary word.
"We need to act fast." A lot of people have asked me what it was like to hear that I had cancer at such a young age. What's the appropriate reaction to one's own cancer diagnosis? Are you supposed to break down in tears, or faint, or scream?
I did not do any of those things. Instead, I froze and repeated the word over and over in my head: Loo-kee-mee-ah. Loo-kee-mee-ah. Loo-kee-mee-ah. It sounded like an exotic flower. It was my next reaction, however, that really surprised me.
“Am I going to lose all my hair?" I blurted out to the doctor.
On balance, since I had just been diagnosed with a life threatening illness, worrying about hair loss seemed petty and irrelevant, even narcissistic. But a bald head—the signature side effect of chemotherapy—was one of the few tropes that I knew about cancer. I needed to reassure myself by asking questions that were within the realm of my understanding. A question like, What's going to happen to me? could have lethal and terrifyingly unforeseeable consequences. My doctor confirmed that the chemo would take my hair as its prize, within a week or so of starting treatment.
Chemotherapy is a take-no-prisoners stylist. The thing that no one tells you when you lose your hair during chemo is that it doesn't happen all at once. The first evidence that mine was falling out appeared on my pillow: a mess of stray hairs spread across the fabric like a furry Jackson Pollock painting. Then, over the next few days, it started to come out in clumps. Finally, when only a few patches of hair were left on my head, I yanked the rest of it out with my bare hands. I felt like a gardener, pulling weeds from damp soil.
Within a few weeks, I could no longer recognize the person staring back at me in the mirror. Gaunt cheeks. Bald head. No eyebrows. No eyelashes. Skin as dry and white as chalk. And a waist that quickly shrank from a healthy size 6 to a 00. But what hurt most were the silent, invisible side effects of my disease. The isolation. The friends who stopped returning my calls after I got sick. The fear of dying before I had really begun to live my life. And perhaps worst of all, coming to terms with the reality that the chemotherapy had rendered me permanently infertile. Just like that, my life had split in two: there was Suleika BC (before cancer) and Suleika AC (after cancer)—and that's if luck was on my side.
For the most part, my transformation had taken place within the privacy of the four walls of my hospital room. I could avoid the mirror hanging on the bathroom wall, but when I left the hospital for short breaks in between treatments, I couldn't shield myself from the stares of curious strangers. Everywhere I went, cancer spoke for me before I could speak for myself. I tried hiding beneath hats and head scarves and wigs, but they only made me feel like more of an impostor.
One night, I made the mistake of going to a friend's party. It was my first time seeing many of my old college friends since my diagnosis. As I walked through the door, it felt like the music had suddenly gone dead. I could feel everyone's eyes glued to my bald head and to the tubes of my catheter protruding above my right breast. When I made eye contact with people, some quickly looked away. Conversations were awkward as acquaintances stared at their shoes or quickly excused themselves to make another drink or to go to the bathroom. A few minutes later, I told my friends I needed some fresh air. I jumped into a cab, hot, inky tears streaming down my face as I gave the driver directions to take me home.
My mom sat on the edge of my bed rubbing my back with the palms of her hands as I cried myself to sleep that night. I wanted my old life back, and I missed the way I had looked before. While my new situation was entirely unfamiliar territory for me, the feeling of wishing that I were in a different body—that I looked more similar to those around me—harked back to the way I had felt about myself in middle school. Now, however, I had a different perspective on the "outsider complex" of my youth. I was angry at the teenage version of myself, for nitpicking over the color and texture of my hair, when now I had no hair at all.
Almost a year after my diagnosis, with three inches of freshly grown baby hair covering my head, I prepared for the most difficult chapter of my cancer treatment yet: a risky bone marrow transplant that would be my only shot at a cure. My doctors told me point-blank that I had a 35 percent chance of surviving the procedure. The odds were stacked against me. Surrounded by so much uncertainty, I began to search for the things that I could control. I realized that the outward signifiers of cancer could only define me if I allowed them to. I became determined to enter the transplant unit looking and feeling like Suleika, and not just an anonymous cancer patient.
Growing up, I had always wanted to wear the coveted cheerleader uniform. To be a girly girl. But I didn't want that anymore. I needed to look inward and to figure out what my own uniform was going to be. I adopted a brown leather jacket lent to me by my best friend, Lizzie. Boots with spikes on the heel staring at me in the store window? I'll take them. The final piece of my new look fell into place just five days before I was scheduled to enter the bone marrow transplant unit. I went to Astor Place Hairstylists, a cavernous basement barbershop in downtown Manhattan, known for its famously low prices, multilingual barbers, star-studded clientele, and no-nonsense customer service. I wanted to get a simple buzz cut, a preemptive strike against the chemo that would soon make my hair fall out for a second time.
When I explained my situation to my barber, Miguel Lora, he suggested I take the buzz cut one step further by getting "hair tattoos." The idea of a tattoo scared me at first, but Miguel reassured me that he would simply use his clippers to groove a spiral design in the half-inch layer of hair that remained. "What the hell," I said. After all, I had little left to lose. My new style made me look like I was tough, even when I didn't always feel that way. I was adding armor, and I liked the way it fit.
As I walked out onto the street, a construction worker whistled at me. "Cool hair!" he shouted out. It was the first time since my diagnosis that someone had made a remark on my appearance that wasn't cancer related.
While cancer may not be a choice, both style and attitude are. I wish I could have told this to my fifteen-year-old self. Trying to make my unruly brown locks blond back then was as futile an effort as trying to pretend that I had hair after my chemotherapy. I would never go so far as to call cancer a gift. After all, I would never give it to you for your birthday. But I would call it a teacher. My disease has taught me that I can far more effectively take control of my look by embracing it and having fun with it, rather than forcibly trying to make it something it is not. This approach toward my outward appearance extends into a larger lesson: no matter what life hurls your way, the best way to face a challenge is to lean into it and to make it your own.
Eventually, my hair would slowly start to grow back. As soon as it was long enough, I went to see Miguel for more hair tattoos. I shared photographs of my new hairstyle on social media, and within a few months, several other young cancer patients had gone to see Miguel to get their own hair tattoos. The tattoos had shown us a new way to have fun with the hair that we had—or that we didn't have—and given us a newfound confidence in our own skin.
I survived the bone marrow transplant. With each day, I'm getting stronger and healthier. And in the time since then, I've come to appreciate the benefits of sticking out in a crowd, even though I don't always seek out the circumstances. Today my hair is about two inches long, short and spiky just like my mother's. When people tell me how much we look alike, I smile and thank them for the compliment. I'm still a long way from having waist-length Rapunzel tresses. But the funny thing is, I don't want them anymore. Short hair is starting to grow on me.
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Jon Batiste is a treasure. His heartfelt Grammy acceptance speech last night was magnificent!! 
Jon Batiste and his bevy of Grammys. Oh, what a night...
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