First Person: In Ellen's Words:

Imagine wondering if you’ll ever have another conversation. I faced this. I do research to help find cures for leukemia and other diseases at the Dana-Farber Cancer Institute in Boston. I’m also a Harvard Medical School instructor. I love research but needed to take the edge off my intense work. So I went to broadcasting school to see if I could find a balance—a creative outlet. It worked.

Eventually I was hired by a Nashua, NH, broadcasting company to be a radio weather reporter. I thrived on racing from one job to the other. I continued my work as a researcher and did part-time weather announcing. My husband, Ken Yoffe, a pediatrician and genetics expert, was always encouraging. The left side of my mouth twisted inward halfway through a short broadcast one day, making it very difficult to talk. I was afflicted with oromandibular dystonia, a Parkinson’s-like disorder that causes the jaw to clamp shut or hold open, like a paralysis. This neurological disorder is believed to have a genetic basis. The type I have was brought on by repetitive movements—more than two years of steadily speaking similar phrases and specific articulation into a microphone. I had to quit my radio work. I lost my creative release.

At the lab, I couldn’t talk to colleagues, couldn’t give lab presentations. It was embarrassing and stigmatizing, a nightmare. I ended up working more from home. I was in despair, devastated by the loss of speech for months on end. I also suffered from an overwhelming sense of isolation, since most don’t know about or understand dystonia. The standard treatment for this disorder involves oral drugs and Botox injections, but these didn’t work for me.

What saved my sanity? Writing and art—things I’d been interested in as a young girl. I wrote a young adult novel based on my broadcasting work. Ken and I then wrote a children’s book on geography. So far we’ve written and illustrated three books together. We donate personal proceeds from the books to causes that mean a lot to us—Parkinson’s, dystonia and heart disease research, among others. There’s a wonderful connection between my passion for finding cures for diseases and my passion for writing.

We started a family a year after my diagnosis, in 2006. We adopted our daughter, Emily, from China. At first I was scared beyond anything. When we brought her home, my dystonia was extreme, so I was afraid I’d have trouble communicating with her. But thankfully I’ve been able to gain back speech. The dystonia is basically in remission. Though there’s no known cure, I found an acupuncture protocol that keeps my symptoms mostly at bay.

Our daughter inspired our book All Across China. Now 4, Emily is like a little partner, helping me pack up books to donate to libraries and schools. Working two jobs is invigorating. I continue to do medical research and write. They energize me so I can give to my family and give back to the world.