The Beat Goes On

25 May

Anne Francey

Music, as the saying commonly goes, can soothe even the savage beast. What about the frail beast? The sad one?

My parents started me on the piano at the age of 4, but it wasn’t until the fourth grade that I chose music for myself. The music teacher at Lake Avenue Elementary School stood in front of the class with a dozen stringed instruments lined up at the front of the room. Choose your instrument, she invited us.

The thought that I could choose my instrument was a revelation. Violins, violas and cellos were the hot items — and there were more of them than any other instruments — but I was curious about the big wooden object at the end of the row, leaning up against the the chalkboard. The double bass. It was taller than I was — taller than the tallest boy in my class — and what’s more, my teacher told me I was one of the only girls in her memory who’d expressed interest in playing it. I had to try it. That afternoon I took it home and gave it a name: Charlie Brown. I was going to be a double bassist.

By age 16, I was a student in the precollege program at the Juilliard School of Music in New York City. Every week I commuted from upstate New York — a four-hour ride on Amtrak — often barely making it on time to my 9 a.m. music theory class. Everywhere I went, my bass came with me. It was cumbersome. It attracted stares — and sometimes unwanted offers of help from strange men. Lugging it around the subways and buses and sidewalks of New York City was a chore — especially for a teenage girl who insisted on wearing heels — but it was worth it. When I showed up somewhere to play, I felt like I had already warmed up.

Last spring, one year out of college, I found myself once again commuting from upstate to the big city. Same train, same route. But this time I was on my way to see an oncologist. I was 22 and I had just been given a diagnosis of acute myeloid leukemia. My relationship with music changed abruptly. I no longer had the stamina or the interest in playing the bass. And once I entered the hospital to begin my intensive chemotherapy treatments, I stopped listening to music altogether.

Between the hospital walls, hearing my favorite songs filled me with a deep, unbearable ache. Music, and the memories attached to them, reminded me of all that was no longer. Where had that feisty, fresh-faced music student with long auburn hair gone?

Continue reading, here.

Hope Is My New Address

22 May

Suleika Jaouad at a halfway house following her bone marrow transplant.Photo Credit: Anne Francey

I opened my eyes to find doctors peering over my hospital bed. They had some welcome news.

I had for a month been living in isolation in the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center, my only option after my diagnosis with acute myeloid leukemia last year. Now, the doctors cautioned me that while my immune system was still very weak, my brother Adam’s healthy cells were beginning to engraft in my bone marrow. I was showing signs of progress: I had transitioned from my feeding tube to solid food, I was able to walk around — slowly — without assistance, my blood counts were going in the right direction, and I no longer needed to be connected continuously to an IV machine.

It was “graduation” day. The doctors were sending me to the Hope Lodge, a halfway house sponsored by the American Cancer Society, in Midtown Manhattan. I would live there for the next three months, cared for by my boyfriend, Seamus McKiernan, who is again helping me write this column as I regain my strength.

Rolling out of the hospital onto York Avenue in a wheelchair, I took my first breath of fresh air in weeks. It was a muggy spring afternoon, but I was huddled in my father’s wool hat and a ski jacket, and my teeth were chattering. My belongings from the four-week stay were piled precariously in a second wheelchair, which a nurse pushed behind me. The two wheelchairs clogged the busy street outside the hospital’s main entrance. People stepped aside, inadvertent spectators to our little procession.

But before I could relish this moment, my mother was lunging at me with a face mask. I shot her an annoyed look, but I knew she was right. For the immediate future, anywhere I wanted to go in public I would need to wear gloves and a mask. No subways, no crowds. My feet touched the sidewalk briefly as I got into the waiting taxicab.

Continue reading, here.

NPR Interview

20 May

Last week I spoke with NPR host Neal Conan on ‘Talk of the Nation.’ Listen to the interview here.

 

Seamus took this photo of me during a brief outing to the west village this weekend.

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Posting Your Cancer on Facebook

10 May

My latest piece for The New York Times on revealing my cancer diagnosis on Facebook.

 

In the midst of a medical crisis, I found myself preoccupied by a social media question: To share or not to share?Photo Credit: Seamus McKiernan

 

In the world of social media, we are our own self-portraitists. Our digital identity is doctored to show the best version of our lives. (Maybe a more apt name for Facebook would have been “Best Face” book.) It’s not a new observation to point out the disparities between our online identities and our real selves, but for me, as a cancer patient, that gap has never felt larger.

If you had visited my Facebook profile last June, you would have found pictures of a smiling 22-year-old girl with long, wavy hair. She’s exploring the streets of Paris with a chubby King Charles spaniel named Chopin; eating tiramisù with her boyfriend Seamus at a cafe in the Marais district; having sunset picnics along the Seine with friends after work. This was a happy, successful, carefree person. On Facebook, aren’t we all?

Continue reading, here.

Interview With My College Newspaper

28 Apr

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NEWS | BEYOND THE BUBBLE | APR. 27

Blogging through cancer

By STEPHANIE LIU
STAFF WRITER
Published: Friday, April 27th, 2012

“Anyone who’s been in the role of patient can attest to the way it changes how you see yourself,” Suleika Jaouad ’10 wrote in a recent column published in The New York Times.Jaouad, a 23-year-old writer, was diagnosed with leukemia a year ago, only shortly after graduating from the University. In between undergoing rounds of chemotherapy and working toward recovery, Jaouad writes a regular column in The Times, and previously wrote for The Huffington Post, about her life with cancer.

Beginning to write about her experience with cancer was not easy, she said.

“I’ve always loved to write, but I never thought I’d be writing about cancer,” Jaouad  said in an email.

For more than half a year after her diagnosis, she was unable to write about her experience. “I was in shock, I’m pretty sure,” Jaouad said. “I had no perspective. And it felt too personal and too painful to share my story with the public.

“But there came a time after many months of isolation that I missed a community … I didn’t want cancer to be a secret, but it had slowly become one, in a way, by not talking or writing about it. It was time to share — to write, for a public,” Jaouad said.

Jaouad pursued her interest in journalism at the University, taking journalism classes and eventually winning the Edwin F. Ferris Prize for her work in a journalism class, “Writing About War.” Thanassis Cambanis, a fellow at the Century Foundation in New York and one of Jaouad’s former journalism professors, recalls one of Jaouad’s pieces on the Israeli and Palestinian conflict for his class as “remarkably fresh and insightful.”

According to Cambanis, Jaouad decided to write about one of her classmates, an Israeli girl who had been wounded in a suicide bombing in Israel. Jaouad wanted to expand the article by finding the family of the suicide bomber in the West Bank.

“Through her sheer persistence, she managed, over the course of couple of months, to actually find the mother of the suicide bomber and interview her by Skype,” Cambanis said. “And she ended up producing this really, really powerful and perceptive and moving piece about these characters.”

Jaouad’s blog, “Secrets of Cancerhood,” was picked up by The New York Times. Since then, her articles have triggered a slew of responses from readers through Twitter, Facebook, email, comments and other avenues.

“It has been an outpouring, and I attribute that to both the prevalence of cancer and the difficulty in talking openly about cancer,” Jaouad said. “It’s humbling because I know that my articles are merely a trigger for this massive cancer community yearning to communicate.”

She added that the ability to use social media has been therapeutic for her.

“It has allowed me to engage with a community while I’m isolated in a hospital room,” Jaouad said.

In one of her blog entries, Jaouad reflected upon maintaining her identity and remaining herself, while doctors and nurses controlled so much of her life and treated her as just another body that they had to care for, she said. “I had crossed over into a new land, the land of ‘patient.’ And with every step I was feeling less like Suleika,” she wrote.

In another piece, she described her world as a waiting room. “Disease infects not only your body but your relationship to the past, present and future … When mortality hangs in the balance, daydreaming about the future, one of life’s most delicious activities when you are young, can be a frightening exercise,” she wrote.

In the entry, she continued on to describe how, in the days before receiving a bone marrow transplant, she felt an immense amount of pressure and self-consciousness to decide how to make the most of each moment of time.

According to Jaouad, in her writing she strives for “honesty and authenticity of my experience above everything else.”

“I’ve found that a lot of the things being written about cancer try too hard to see the bright side of this situation,” Jaouad said. “I know that cancer patients want the real as well as the bright. They want the ugly along with the uplifting. Because that’s real.”

Cambanis follows his former student’s blog and noted that the posts are about more than just cancer.

“These are stories about Suleika and her life with cancer, and I think that’s part of what makes them remarkable and so readable,” Cambanis said. “What she’s doing here with her writing about cancer is a really old and difficult task of being confessional without becoming maudlin or sentimental, and I think that’s the hardest thing for a writer to do, especially if you’re writing about something that is inherently personal.”

The style and format of Jaouad’s writing in her columns vary. Occasionally, she organizes her thoughts into a list, as in a recent list titled “10 Things Not to Say to a Cancer Patient.” She said that she tends to tell her story, then zoom out to discuss the more universal aspect of her experience.

“I’m always thinking about who I might be writing to,” Jaouad said. “That’s my favorite part of this experience, because one of the worst things about disease, it seems to me, is being alone with it.”

At the University, Jaouad majored in Near Eastern studies, with certificates in French and women and gender studies. For her senior thesis, Jaouad traveled to Tunisia to conduct interviews with Tunisian women to document how they transitioned to independence and gender equality.

Her thesis, “From the Patriarchal Family to the Patriarchal State: The ‘Woman’s Question’ in Contemporary Tunisian History,” won the Suzanne M. Huffman Memorial Prize, among other honors.

Jaouad’s thesis advisor, L. Carl Brown, professor emeritus in Near Eastern studies, said Jaouad was one of the top thesis advisees he has worked with in decades of teaching. “She just did a splendid job of creatively tackling that subject … with an empathy for all parties concerned,” Brown said.

Prior to her diagnosis, Jaouad was planning to expand her research to include post-Arab Spring women in Tunisia.

“You rarely hear about women and the Arab Spring in the news,” Jaouad said. “But every day women there are working to make sure their rights and their vision for the future are incorporated in the ‘revolution.’ ”

“Now I’m writing about cancer, a different kind of revolution,” she said.

Correction: Due to a reporting error, a previous version of this story indicated that Jaouad writes a regular column for The Huffington Post. In fact, she used to write for The Huffington Post but now writes exclusively for The New York Times. The ‘Prince’ regrets the error.

Original URL: http://www.dailyprincetonian.com/2012/04/27/30804/

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A Patient for Now, but Maybe a Mother Someday

27 Apr

My piece on cancer and fertility — or infertility, as the case may be — published on April 24, 2011 in the ‘Science’ section of The New York Times.

Suleika Jaoaud, spending time with her boyfriend, Seamus McKiernan, in Saratoga Springs, N.Y., before her bone marrow transplant.Photo Credit: Anne Francey

 

The family minivan idles at the intersection of 59th and York in Midtown Manhattan. My boyfriend swabs my midriff with alcohol as he steadies the needle. My parents look on from the front seat, quietly studying their 22-year-old daughter and the young man they’ve known for only a month. The needle is filled with gonadotropin, a hormone that stimulates the ovaries to produce eggs. I’m late for my checkup at the fertility clinic.

How in the world did I get here?

Continue reading, here.

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The Patient in the Mirror

24 Apr

The latest piece in “Life, Interrupted,” my weekly column for the New York Times ‘Well’ section.


Photo Credit: Ashley Woo

“Today, I’m writing from a hospital bed in New York City. I’m in the bone marrow transplant unit, where this week I’ve undergone 20 intensive chemotherapy treatments in anticipation of receiving my brother’s stem cells. In the year since my diagnosis with leukemia, I’ve struggled to hold onto a sense of who I am while I watch the person in the mirror change.

Looking back, I call the first month after my diagnosis “the cancer bubble” because I wasn’t showing obvious signs of my disease. I looked about the same — maybe a little more tired and pale than usual, but a stranger could never have guessed that I carried a secret, deep in my bones.

In the oncology ward, I still felt invisible, flying under the radar with my waist-length hair and the nose ring I got when I was 14. In the waiting room at my second appointment, a man with a sleeveless shirt and a bandanna covering his hairless head leaned in toward my father, who’s been bald since the ’80s, and raised his fist in the air: “Live strong, brother,” he said. Later, my dad and I had a good laugh about the mix-up — it helped ease our tight nerves for a moment. But I remember also feeling slighted, as though my terrible new disease wasn’t being acknowledged.”

Continue reading, here

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