Keynote: Suleika Jaouad

keynoteThe attendees of the first annual Cancervention on April 18th were delighted to welcome Suleika Joauad as the keynote speaker.  The Emmy Award winner and author of the New York Times column “Life, Interrupted” was introduced by our wonderful YACC co-founders, Dakota and Cara.  The audience warmly welcomed Suleika, who, through her writing, has been an inspiring representative and voice for the young adult cancer community in recent years.

Suleika began by sharing a video which was part of a series that accompanied her New York Times column.  The video shows the trajectory of her young life through powerful images and personal commentary.  It begins with Suleika, beaming in her cap and gown with cascades of wavy brown hair falling over her shoulders.  Fast forward to the still image of Suleika’s small frame curled up on a hospital bed, facing away from the camera, her shaved head resting on a pillow. Suleika ultimately embraced this altered image with new forms of self-expression through style and dress.  The video documents her treatment, which rendered her sedentary.  It was during this time that she took to writing and as it turns out, she’s pretty good at it.  Her writing has been an incredible outlet for her personal healing and growth, as well as a source of comfort for many young adults with cancer who share her experience.  There wasn’t a dry eye in the room as the video ended and the audience refocused their attention to Suleika.IMG_1601

Suleika won the young crowd over immediately with her shared vulnerability and humor.  She joked that she was “so mad at Carrie Bradshaw” for giving her the false-image of of an idyllic and glamorous post-grad life in New York City. Suleika then decided to take a paralegal job in Paris and explained the events leading up to her cancer diagnosis.  After feeling ill for weeks, Suleika was diagnosed as anemic. But after faithfully taking iron supplements as directed by the physician in Paris, Suleika’s condition only worsened.  She explained that during her eventual hospitalization, the physicians ran every test except for a bone marrow biopsy, “because they didn’t feel that was necessary for someone [her] age.” This oversight is a common experience for young adults who are not immediately diagnosed. But for Suleika, a diagnosis would come on May 2nd, 2011 as she explained, “nothing of note was happening in the headlines that day, but my world was about to change.” Suleika explained that being diagnosed with myelodysplastic syndrome, a rare bone disorder and acute myeloid leukemia, she wondered why this was happening to her. These unanswerable questions are ones that many young adults with cancer grapple with after a diagnosis.

“The name of my column is ‘Life, Interrupted,’ because that’s what it feels like for a young person to get cancer.”  There were nods of agreement from the audience, as Suleika shared with them the difficulty she faced in trying to understand herself and face an uncertain future as a young woman with cancer. She expressed that cancer had acted like a pause button in her life, as some important milestones of early adulthood passed her by, leaving her feeling “stuck and infantilized.”  She recognized the disjuncture in feeling stuck in a childlike state, while being forced to grow up fast, confronting questions about the future in a way that was radically different from the process that her peers were experiencing.  Suleika recognized that a cancer diagnosis at such a young age sends many people into a state of liminality.  This confusing transitional stage also applies to the treatment experience, as young adults are too young to be treated as adults and too old for pediatric treatment. Suleika also identified another uniquely young adult aspect of cancer, the stress-inducing impact of social media.

As a way to combat this stress and to find meaning in other ways, Suleika began the 100 Day Project, an idea that she and her family came up with during her hospitalization.  “The idea was that each of us would do something, no matter how small or big, every day for 100 days.” It was during this time that Suleika began writing. She joked,  “On some days, that meant pouring my heart out onto 100 pages. And on other days, that meant writing one word…generally the F word.”  This became a positive activity for Suleika and her family.  It not only kept her busy, but it gave her meaning, as a way to develop her self-awareness, “when the person looking back at [her] in the mirror was changing dramatically everyday.”  In the face of uncertainty, Suleika tried to find the story that she could tell from her hospital bed.  Inspired by Frida Kahlo, who was bedridden when she found painting, Suleika used writing to give voice to the young adult cancer community which was previously unheard. On her second day in the bone marrow transplant unit, her ‘Life, Interrupted’ column launched, connecting her to the young adult cancer community.

IMG_1610The audience applauded when Suleika shared that she is now cancer-free and able to focus more on the ‘life’ part of ‘Life, Interrupted.’  With this renewed perspective, and new DNA thanks to her bone marrow transplant from her brother, she’s now able to eat as much peanut butter as she wants while she figures out her next steps.  Suleika reminded the audience that life after cancer isn’t always a perfect happy ending, as she handles the permanent and invisible “imprints on [her] and [her] body.” She mentioned all of the “collateral damage” that goes unmentioned: the weakened immune system, infertility, financial difficulties, etc., that are just as important as discussing the treatment and cure. After all, “what is the point of saving a life if that life isn’t a good one, or an enjoyable one, or a meaningful one?”

Despite the uncertainties that the future might hold, Suleika expressed that she is focusing now on the present, “finding small acts of happiness to build [her] day around.” She left the audience with two challenges: the first was for each of them to come up with a personal 100 Day Project. The second was to make a friend at the conference, a challenge that many certainly accepted and accomplished.
Dakota, Cara and Suleika

After Suleika spoke, the audience was able to participate in a Q&A session. The initial questions were prepared by our own Dakota and Cara, who started with everyone’s favorite: When was a memorable moment in which you pulled the proverbial cancer card? The audience shared laughs as Suleika recalled that on a flight a few weeks ago, she had worn a face mask which compelled the man sitting next to her to change seats. To Suleika’s delight, she was able to sprawl out and sleep for the rest of the flight!  Next Suleika offered poignant advice about coping with recovery: be in touch with your body and give yourself time to heal. She also suggested that connecting with someone who has also gone through this experience can be helpful, in addition to speaking with a therapist for support. She thanked the strangers who showed her kindness during her cancer experience, and expressed that these acts of kindness inspired her to be a better friend. Suleika left the audience with words of advice and encouragement: be willing to forgive those people in your life who have trouble understanding what you’re going through, and express your gratitude to those who have been there from the start.

Until May 31st, you can catch Suleika’s full speech here!

 

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