Few Words and a Fighter’s Spirit: Living with Dystonia

By Danielle Bradshaw from In The Cloud Copy

Cheri Tannenbaum spends her days making 1960s flower child themed clothing and it’s a style that she’s rather fond of wearing too. One of her children, the now-adult aged Nechama, says that the look was once unbearably embarrassing; however, they’ve grown used to it. Tannenbaum, on the other hand, says that she dresses the way that she does because she wants people to look past the disability and see the real her.

Cheri Tannenbaum was in her mid-20s when she was diagnosed with a rare neurological disorder called dystonia musculorum deformans (DMD). In her writing, Tannenbaum has asked her readers to think about whether or not they’d enjoy being unable to form comprehensive words or walking in a way that results in constant stares and falling over.

She says that she definitely wouldn’t choose to live with dystonia and that she feels fraudulent when she’s told that she’s an inspiration to people because it takes her so much effort to get out of bed each day and face another round of ignominy and struggle.

What is DMD?

Dystonia musculorum deformans or torsion dystonia is a rare variation of dystonia that typically starts around childhood and gradually worsens over time. It’s not uncommon for people with DMD to end up in wheelchairs and severely disabled. The neurological disorder can either be inherited or caused by traumatic injury, adverse reaction to pharmaceutical drugs, poisoning, or infection.

Torsion dystonia is a generalized form of dystonia that involves painful muscle contractions that eventually results in the body contorting itself. It usually starts in a specific area (like a leg) and spreads throughout the rest of the body. Most cases become debilitating in around five years.

The Story of Cheri Tannenbaum

As Cheri’s body became more and more limiting, her first order of business was to end the relationship she had with her boyfriend in Canada and adopt a religious way of life. Her brother, Marc Belzberg, was invited to be a speaker at an Orthodox Union youth movement convention and when she traveled along with him, she met Harvey Tannenbaum, the man who would become her husband.

In June of 1974, the two were married and her doctors – who at the time were under the assumption that her illness was psychological – thought that it would be the breakthrough that she needed to recover. However, that didn’t happen. Instead, she’d gotten her dystonia diagnosis and began a series of treatments that didn’t work. Throughout all of this, Cheri had earned her bachelor’s in psychology, her master’s in human development, and was a volunteer mikveh or ritual bath attendant.

She’d then decided that she was going to try for children in 1985 and quit all of her medications to make it happen. Although it was rough going and the entire process of having and raising her child was going to be difficult, she decided to add two additional members to their family once they’d moved from Israel to Los Angeles.

The thing about Tannenbaum is that she doesn’t dance around the struggles in her life. She’s been very transparent about the postpartum depression she’d suffered after the birth of her third child. She’s spoken about her suicide attempt and has talked about her multiple hospital visits for broken bones and other assorted injuries and complications. Cheri had even passed out cards to people saying that she’s neither mentally retarded nor deaf.

Needless to say, at times, it’s been hard for her to keep the faith. She said that it was like fighting divine forces. But she was comforted by many words of encouragement from people that she knew. Rabbi David, Moe Mernick, Michele Thaler, Rabbi Yechiel Spero; their words and so many others are scattered amongst the pages of her book.

Although plenty of her prayers haven’t been answered, there was one ray of light in the form of medication made for a rare kind of seizure called laughing epilepsy. Taking the drug finally allowed Tannenbaum to clearly speak. It was a real miracle.

Words of Wisdom from Cheri Tannenbaum

Cheri says that she could have just packed it in, wrapped herself up in her blankets, and stayed in bed. She says that she’s learned first-hand what being “the other” is like and how stigmatizing it can be. She said that she’s learned just how strong she is and that she has a fighter’s spirit.

Check out more about this story here.

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