'Woman of Few Words': Living with dystonia and having a fighter’s spirit

Tannenbaum’s condition remains a daily challenge, and she must make a daily decision to choose life.

A WOMAN dresses her son, who suffers from a neurological disorder, in Sao Paulo in 2012. (photo credit: REUTERS)
A WOMAN dresses her son, who suffers from a neurological disorder, in Sao Paulo in 2012.
(photo credit: REUTERS)
The kaleidoscopic cover of this book reveals much about its author even before you open it.
Cheri Tannenbaum is a colorful personality. She creates and wears clothing and jewelry evocative of her 1960s “flower child” days – a look that embarrassed her teenagers in public until, as adults, they came to appreciate what daughter Nechama calls her mother’s “special taste.”
The truth is that people would notice Tannenbaum no matter what she’s wearing, so she may as well dress in a joyful way that teases out her dazzling smile. “I always wear an upbeat look on my face, hoping it will be infectious and that people will see the real me and not my disability,” she writes.
In 1972, in her mid-20s, Tannenbaum was stricken with dystonia musculorum deformans, a rare neurological movement disorder.
“How would you like to be unable to speak intelligibly? How would you enjoy having an awkward gait that makes you prone to falling and causes people to stare as you shuffle by?” she asks her readers to consider.
“Living with dystonia is not something I would have chosen for myself. To tell the truth, what I really long for is normalcy. Better yet, I’d like to go away somewhere and not take myself with me! Wherever I go, people are always telling me that I am an inspiration. This makes me feel like a total fraud, because to my mind I’m just doing what I have to do to drag myself out of bed every morning and face another day of humiliation and challenges.”
Inside a body that was progressively limiting her, Tannenbaum’s mind and spirit soared. She ended her relationship with her gentile, transcendental meditation-practicing boyfriend in western Canada and transitioned into a religious lifestyle.
When her brother, Marc Belzberg, was asked to speak at a convention of the Orthodox Union’s youth movement in Florida, she accompanied him and there she met her future husband, Harvey Tannenbaum. They wed in June 1974, at a time when doctors still assumed her malady was psychological and hoped marriage would help her “snap out of it.”
Instead, she soon got her diagnosis and underwent various unsuccessful medical treatments. During this difficult time, she managed to earn a bachelor’s degree in psychology and a master’s in human development, and to volunteer as a mikveh (ritual bath) attendant.
In 1985, she decided to go off all medications and try to have a baby. That she did, but nothing about the pregnancy, birth or motherhood was easy. Nevertheless, she gave birth to two more children after the family’s move to Israel from Los Angeles in 1994.
Tannenbaum chronicles her challenges in a way that highlights her determination and faith without sugarcoating her serious struggles. After her third child was born, she experienced severe postpartum depression and tried to commit suicide. She has endured countless hospitalizations, broken bones and other injuries and maladies. At one point she handed out calling cards informing people she met that she was not deaf or mentally retarded.
All that turmoil tested her faith.
“I was in a constant state of wrestling with the divine,” she writes. Among her comforts were inspirational and encouraging insights from wise people including Rabbi Baruch Taub, Orit Riter, Rabbi Shmuley Boteach, Rabbi David Aaron, Moe Mernick, Michele Thaler, Chana Kroll, Rabbi Yechiel Spero and others. Excerpts from their writings are sprinkled throughout the book and listed in an appendix.
Certainly, many of her most fervent prayers have not been answered in the affirmative. But one big breakthrough came when she was put on a medication for a rare form of seizures called laughing epilepsy. Suddenly, she regained the ability to speak clearly.
“Yes, there are miracles – they may just take a very long time to happen,” she writes. “I was deeply grateful to Hashem for liberating me from a forty-year prison sentence.... I was so elated and invigorated that I did not know what to say first.”
The idea of being unable to express herself for 40 years is nearly impossible to grasp. It’s quite understandable that her heightened appreciation of words drove her to put them on paper. If some of her writing feels almost too personal, such as the messages to each of her children, it only underscores the preciousness of her ability to articulate and the warmth of her personality.
Tannenbaum’s condition remains a daily challenge, and she must make a daily decision to choose life.
“I could have made the choice to just stay in bed and pull the covers over my head and never get up,” she writes.
But her trials have taught her much about herself, her faith and her fortitude.
“I have learned what it means to be different, and the humiliation and stigma that go along with that.... I have learned that I have strengths I never knew I had. I have learned that I have a fighter’s spirit,” she writes.
Perhaps sharing her story is meant to trigger similar revelations in the reader.
By Cheri Tannenbaum
Gefen Publishing House
138 pages, $18