It started with some messy handwriting and weight gain, something Cheri Tannenbaum, then in her early 20s and studying at Stern College in New York, blamed on late nights and snacking. Then her voice began to change.
Cheri Tannenbaum
“I remember being in the kitchen with my mother [in Vancouver] making a salad, and she asked me a question and I couldn’t answer her. My mouth wouldn’t move, so I couldn’t form intelligible speech,” said Tannenbaum, now in her late 50s, in an e-mail interview.
Tannenbaum, born in Vancouver, was in the process of returning to Orthodox Judaism when she started experiencing these symptoms, which included spastic leg movements.
“My family started imitating me and making fun of me because they thought I was joking. After awhile, when I couldn’t speak, everyone realized it wasn’t a joke.”
This is when the doctor visits started. For three years, Tannenbaum and her family visited everyone from general practitioners to neurologists, but her tests came back normal.
“They decided it was psychological, so I went to lots of psychologists and psychiatrists,” Tannenbaum said.
Eventually, she was diagnosed with hysteria due to “turning religious, getting in touch with my roots, the holocaust, etc.,” she said.
“I had to go to a psychiatrist a few times a week. All I did in the sessions was cry, ‘I’m not psychologically ill, I just can’t talk or walk anymore and I don’t know why.’”
Tannenbaum, who was told that a change in her life might snap her out of the hysteria, eventually got married and moved to Los Angeles, where her husband lived.
“My honeymoon was spent at Scripps clinic in La Jolla, Calif., for more testing,” she said.
Eventually, she went to a neurologist who diagnosed her with a rare neurological condition called dystonia musculorum deformans.
Dystonia is a movement disorder that causes muscles to spasm involuntarily. Focal dystonia affects specific parts of the body, while general dystonia affects all major muscle groups.
After she was diagnosed, Tannenbaum’s family started the Dystonia Research Foundation, which works with doctors and researchers worldwide.
“Ironically, it has helped many people, but not the one it was started for. Me,” she said, adding that doctors still can’t tell exactly what kind of dystonia she has.
“It was a tremendous relief for me to finally have a name for what I had,” she said. “But there is no cure for it, so this was a tremendous disappointment for me.”
Still, Tannenbaum continued with her education, receiving a degree in psychology from the University of California Los Angeles.
Tannenbaum then began studying to qualify as a special education teacher, but she was unable to finish.
“I finished all the course work and then I was told that I needed to teach in a regular classroom first. I knew that with my speech limitation, there was no way I could control a classroom of 30 rowdy children,” she said.
Hunting for a career, Tannenbaum started looking through school catalogues and came across a jewelry-making course.
“Not ever having a creative bone in my body, I suddenly developed into an artist,” she said.
Now living in Israel with three kids and a grandchild, Tannenbaum makes and sells “fun, funky, whimsical, big, bold bohemian-style necklaces” and skirts made of ties.
While speaking and mobility are difficult, Tannenbaum uses a Blackberry, e-mail and sign language when communicating. It’s difficult for her to walk, but she can drive.
Still, dystonia isn’t something Tannenbaum can ignore.
“It isn’t like you have a broken finger, where the only time it bothers you is when you need to use it,” she said. “Dystonia is all-encompassing… Sometimes I just wish I could shirk it off for just one second, but at this time, it’s not meant to be.”
For more information about Tannenbaum and her work, visit www.designsbycheri.com.