Archive | May, 2012

The Beat Goes On

25 May

By SULEIKA JAOUAD

Photo Credit: 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.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Advertisements

Hope Is My New Address

22 May

 By SULEIKA JAOUAD 

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.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Posting Your Cancer on Facebook

10 May

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

By SULEIKA JAOUAD 

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.

Follow @suleikajaouad on Twitter and on her Facebook Page.

%d bloggers like this: