A number of TEDMED2015 speakers and performers have faced personal struggles head-on. Not only have they have risen above painful circumstances, they have utilized them to power meaningful change and improve the world for others. Here are a few of their stories:
While struggling to cope with the loss of their 6-day-old son Thomas, Sarah Gray and her family chose to personally seek out and meet the researchers who received his eye, liver, and cord blood donations. Their journey brought profound peace to the Gray family, and in the process, garnered national and international media attention. Sarah is writing a ‘medical memoir’ about the experience, scheduled for publication next year. She says, “It will be a medical detective story in which I, a mother of twins, one of whom succumbs to a fatal genetic defect, recount the decision to give our infant son’s organs to medical science and my subsequent quest to find out what happened after the donation, taking readers to the cutting edge of research, inside other families’ stories, and what it means to come to terms with loss.”
Sarah recalls a profoundly moving moment, when the researcher who received her son’s retinas confided that she felt guilty about wishing to obtain a specimen of this type, because it is only available after a child dies. “It never occurred to me that a researcher would feel guilty about this, but now I understand why. I actually laughed when she said it. I asked her to never feel guilty about this, because if her study didn’t need my son’s retinas, they would be buried in the ground and not helping anyone. I am grateful that her research gave my son’s life an added layer of meaning.”
Thomas’s retinas have proven very useful—the researcher had been searching for six years for such a sample for her study of retinoblastoma, a deadly childhood cancer. “My son’s retinas were the only suitable specimen of healthy tissue that she has ever received,” Sarah proudly says.
Blind since birth, mezzo-soprano Laurie Rubin (one of our featured performers) has performed at Lincoln Center, the Kennedy Center and the White House, and is co-artistic director, co-founder and resident voice teacher of Ohana Arts Summer School of the Arts in Hawaii. Luminous as her voice and story may be, a thread that runs through her work is her experience of having been bullied as a child. In collaboration with composer (and wife) Jennifer Taira, Laurie released a song and music video, which features the stories of women overcoming the effects of bullying. Laurie also recounts the isolation she felt as a victim of bullying in her memoir, Do you Dream in Color? Though the memoir is primarily filled with thrilling stories and adventures from her life, Laurie finds that it is the day-to-day struggles that she describes that resonate most with her readers. Many wrote to Laurie, telling her they’d expected to read about a blind girl but “came away from it realizing I had just read a book about myself.” With a goal of promoting dialogue and forgiveness, Laurie tells us that, “Our experiences are universal, and we all have more in common than we think in spite of our differences.” Not only that – she challenges those “who feel their weaknesses hold them back to not only dream big, but to gather all the skills and tools they can to achieve their big dreams, no matter how hard it may seem to achieve them.”
One week after graduating from Yale Law School, and one week before his 26th birthday, Seun Adebiyi was diagnosed with two aggressive forms of cancer – lymphoma and leukemia. With a grim prognosis, he was given only months to live. His best chance of survival was a stem cell transplant. However, having fully African ancestry, Seun struggled to find a donor. Less than 17% of Africans are able to find a donor to match their blood type and only 8% of registered donors in the US are black. While he was still fighting his cancers, Seun launched a Bone Marrow Donors Registry and organized the first bone marrow drive in his native Nigeria. Now fully recovered, Seun is training to become Nigeria’s first Winter Olympic athlete. He also directs the American Cancer Society’s Global Scholars program, training advocates to advance cancer screening, treatment, and palliative care in under-resourced, low-income countries.
When asked what his clone would do (if he had one), Seun responded: “I don’t need to clone myself. I work full time for the American Cancer Society and part-time for Uber; train for two Olympic sports; and still have enough time to earn a pilot’s license and a massage therapy degree. I’m also an avid student of yoga and meditation, and I enjoy taking mid-day naps.”