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Dear Julia: I know you’re from the Chicago area — have you heard of Jenna Benn and her blog, KillitintheButt.com (http://KillitintheButt.com), dedicated to chronicling her fight against cancer? It seems like this generation of patients increasingly opens up through social media about their challenges. — Armchair Doctor
Dear Dr Armchair: Not only have I heard of North Shore native and charismatic cancer cult figure Jenna Benn, 29, I went to high school with her! I remember the young Jenna brimming with energy and laughter, and pretty and popular (but definitively not a mean girl) with long dark hair and a near-constant grin. Although we didn’t stay in touch post graduation, I heard she had been diagnosed with lymphoma last December. How? Facebook, of course.
What I didn’t know is that Jenna’s story — or rather, the way she chose to tell her story through various social media including Twitter, YouTube and a blog — would take her from victim to vanguard.
“Cancer is really isolating, even with a strong support system,” typed Jenna in a Facebook chat interview. “At the end of the day, it’s you against the disease. I typically have been very private, but when I was diagnosed, I found myself needing to go public. Facebook, Twitter, my website became my refuge. It got me through the darkest times.”
Jenna’s blog, hysterically and unforgettably titled “KillItInTheButt.com”, began “really factual” as merely a way to quickly broadcast information to her loved ones. “Communicating with friends and family became a full-time job, and it was exhausting. I couldn’t keep up with the emails,” she said.
But then a funny thing happened. “It evolved into a space where I felt safe talking about my hopes and dreams and fears. And as I became more honest about my experience, others became more honest with me. It no longer was about my journey and fight with cancer. My story was everyone’s story. It was really fascinating: As others were drawing strength from my struggle, I was drawing strength from theirs.”
Her humorous and relatable take on cancer spread virally, and soon she was getting supportive letters from around the world. That’s when she finally “realised the power of blogging.”
But then it got hard. Really hard.
Chemotherapy required lengthy inpatient stays, and a compromised immune system forced Jenna into isolation. “I started to feel really cut off from the world around me,” she said. “Facebook was my connection, but it was hard, because my life felt like it was on pause while everyone else’s was on play. They were having babies, getting married, entering new relationships. I was paralysed.”
Frustrated, Jenna danced alone in her room every day, but “I was really going stir crazy”.
“I figured, well, what can I do? The twist, I could do from my bed. I could even manage to do it when dizzy. So that’s when I put out a dance challenge: who’s twisting with me? And people sent in videos!”
Posted on FB or uploaded to their YouTube accounts, hundreds dedicated dances. “It was the best gift I received, to watch people dancing. I was no longer alone, I was a part of this virtual dance floor — and while my body was failing me, I felt incredibly supported and loved.”
Jenna called it — the dancing, the sharing, the connections — her “new twist on cancer”.
All that twisting and blogging must have worked. After many months of treatment, Jenna’s cancer is now in remission.
On August 11, just one month after her last round of chemotherapy, sporting a sparkly green dress and proudly shaved head, she hosted an event called Twist Out Cancer, (@TwistOutCancer) to raise funds for drug research. I was there that evening, and Jenna practically levitated. In a follow-up blog post about the evening, entitled “Magic is Real”, she spoke of her hard-earned survivorship and the feeling of “floating” on that dance floor surrounded by “love and kindness, generosity and support”.
Much of that, she said, is due — yep — to social media. “It has profoundly changed me. I always said that I would love to be able to tell Mark Zuckerberg thank you,” she typed. “Thank you for getting me through cancer.”
