My Life with Dystonia

My Life with Dystonia

By Cheri Tannenbaum

Courtesy of Aishcom

www.aish.com/sp/so/My-Life-with-dystonia.html?s=mm

In the 1960s, like so many around me, I was becoming a full-fledged flower child. While I was in the throes of my hippiedom, my mother took me to San Francisco, where it all began. I was not enthralled. Thinking about the "me generation" provoked the question: Is this what I want my life to look like? My conclusion was a heartfelt no.

My brother and two sisters had already become observant Jews. I had taken so many journeys already, my mother suggested that I should check out my own religion as well. I started learning with Rabbi Hier and was soon hooked. However, as the second half of my enchanted year at Stern College began, my handwriting suddenly became totally illegible, for no reason that I could ascertain. My voice inexplicably became monotonic, also apparently without reason.

One day that summer, as I was walking out of my class down the grassy path of the campus, my right leg began to kick my left ankle. Since this only happened occasionally, I thought that perhaps I was unconsciously adopting some of the symptoms of the cases that I was learning about in my psych class. But to my horror the kicking started to occur with every step I took.

At the end of the summer, I returned to Vancouver and tried to figure out how to fill my days constructively while waiting for my boyfriend Harvey to propose. One night, I was in the kitchen with my mother. When she spoke to me, I suddenly found myself unable to answer her. My lips were frozen and would not move. When I finally managed to speak, my words came out slurred; they were unintelligible. My family thought it was a joke and started imitating and making fun of me, until they realized I was not joking.

Now unable to speak, with my feet still kicking, I realized it was time to see my physician. He had no idea what was wrong with me, so he sent me to several neurologists for a slew of tests. The results all came back indicating that my health was normal. My physician reiterated that I was in perfectly good health. Nobody could identify the cause of my problems, so they attributed it to "conversion hysteria" – today this is called conversion disorder – connecting my symptoms with my newfound interest in religion and my strong reactions to the suffering of the Jewish people throughout history.

My doctors referred me to a psychiatrist. Twice a week, over the course of about a month, I sat in his office where he would converse with me, trying to figure out the root of the problem. I simply bawled my eyes out. I could not understand why I was there. To me, it seemed perfectly obvious that the problem causing my suffering was physical and not psychological. I was totally sane.

Finally, A Diagnosis

Basically, I was nonfunctional. I felt as if a hose in my gut was siphoning off every bit of strength I had, which wasn’t much. It tore Harvey apart to see me like this, but he continued to feel totally helpless and was unable to help me. Harvey was a very eligible and popular bachelor, and despite my mystery illness, he remained committed to me and we got married in June, 1974. We spent our “honeymoon” at the Scripps Clinic, still searching for answers, being told the exact same thing: all the test results were normal and all I had was hysteria.

I went through the whole gamut of neurological tests available at that time, only to be told over and over again that I was the epitome of health, who just so happened to be unable to walk or talk. Finally I found another neurologist, Dr. Andrea Nash, who told me that she was convinced that I had a physical illness – although she could not identify it – and referred me to her superior, Dr. John Menkes.

I tried to make an appointment, but Dr. Menkes was booked up for months, with his only opening on Saturday, Shabbat, when religious Jews may not travel or do any creative work. I consulted with my rabbi and he said that I could walk there. It took two miles and two hours of my feet kicking each other down the street to reach his office. After examining me, Dr. Menkes diagnosed me with a rare neurological condition called dystonia musculorum deformans.

Finally, it was confirmed: it was not hysteria, and i was totally sane. I had a physical illness. My initial indescribable elation at finally finding a medical reason for my condition was shattered when the doctor proceeded to tell me how rare it is, that there is no known cause, and, thus, no known treatment or cure.

Poor Harvey! All his hopes, dreams, and visions, all his goals and fantasies for a new marriage and a new life were obliterated instantly with the word dystonia. He was totally shattered, and so was I. On the one hand, it was a huge relief that I was not suffering from hysteria; on the other hand, it was devastating to know that we would have to deal with a chronic, incurable illness…possibly, for the rest of our lives. My husband at first was upset and embarrassed by my condition, but eventually he got over it and together we struggled through this as a team.

Facing the World

If you want a small, bitter taste of what it feels like not being able to speak to others, try the following experiment (and don't tell anyone of your plan): The next time you meet with friends, do not say a word. Let it be as if your mouth is sealed. As the conversation flows from topic to topic, do not say a word. If you can manage to do this, you will gain a slight understanding of the constant emotional pain and seclusion of those with speech disorders.

My voice was totally without inflection or expression – a monotone – and my speech was completely unintelligible. I tried another speech therapist, who suggested that I hold my nose when I spoke, to prevent the air from escaping and help make me a little more coherent. Doing this did help me become a little more intelligible, but everywhere I went, people asked me if I needed a tissue.

Whenever I went out into the world, I was armed with the trusty note that I had printed in Hebrew and English. It said, “Hi. My name is Cheri Tannenbaum. I have a neurological condition called dystonia, which affects my speech. I hold my nose when I talk because this helps me to talk a little better. (No, I do not need a tissue!) You need to listen to me very carefully to understand me. Please ask me to repeat myself over and over again until you do. I am not deaf or retarded.”

Whenever I would raise a finger to indicate that I wanted to say something, everyone would say, “Please be quiet! Cheri is going to try to say something!” Then everyone would be watching me, expectantly waiting for me to try to painfully eke out some sounds that might or might not be understood. This was a great purifier of my speech. I learned to consider very carefully whether something needed to be said: most things are not important enough for the monumental effort it would take to try to say them.

At the same time, I had to learn that when there was something truly important for me to say, I needed to be really tenacious and insist that people listen to me.

Not being able to talk bestowed a great advantage on me, as I developed the best listening ear. With pride, I loved it when my friends told me that they felt comfortable telling me their deepest, darkest secrets because they knew that I could not and would not tell a soul.

Growing Family

I didn't want to miss out on being a mother and raising children. My doctors at the time told us that my dystonia was genetic, so there was a 50-50 chance that we would have a child who was ill. I could barely take care of myself, how would I be able to take care of a sick child?

My husband and I wrestled with the issue, and we eventually decided thought God is the ultimate doctor and He knows what we need and what would be best for us. We placed our trust in Him, and I gave birth to a healthy baby girl we name Orit.

After we moved to Israel, I really wanted to have more children. But the doctors told us that with each child the chances of having a sick child goes up. The Almighty gave us another solution. At age 41 the doctors told me that my dystonia isn't genetic! I had another girl at age 42, and a son at 44. Thank God all my kids and grandchildren are healthy!

I am sure that my children were embarrassed by me, but they never said so outright. I always told them that when they brought friends over, they should explain my issues to them so that they would feel comfortable and not be afraid. This, my children agreed to do. Once, my daughter Nechama brought a friend home and forgot to tell her. The friend started screaming and crying hysterically, and phoned her mother to come and pick her up immediately. It was terrible for all of us. The children I met, including my nieces and nephews, would scream and cry, and run away as soon as they saw me. I would go home and look in the mirror. What I saw was not some kind of monster. I just did not see what they saw, but this is what I was up against.

Finally, Harvey had had enough and took me to my neurologist, Dr. Avi Reches, who diagnosed me with a rare form of laughing epilepsy. Rare? So what else is new. After prescribing a medicine that disagreed with me, he tried another, and it had the worst side effect in the world: suddenly I COULD TALK.

Yes, God works in very mysterious ways. Yes, there are miracles – they may just take a very long time to happen. At the end of the day, we always end up getting our just due. Never give up. Your situation can change in the blink of an eye, in the snap of a finger, or you may have to wait a while. Perhaps in the end, however, it is worth the wait.

Embracing Life

Happiness is a choice.

I must take life every second as it comes. I know that my day will be a constant struggle and full of humiliation. I try to surround myself with positive, supportive people. I take help from others when I need it. (I always say, “I’m not helpless. I just need some help.”) I try to give to someone else, to transcend my own self-absorption. I hear the call of God: “See how I am helping you to bring out your greatness so that you can be an inspiration to others.” I hear the call of my husband, loving me and rooting for me, and saying, “I still need a life partner despite your disability.” I hear the call of my children loving me and rooting for me, and each saying, “I still need you.” I hear the cry of the people I know loving me and rooting for me and saying, “We all still need you.” I hear my creative spirit calling me and saying, “There is still more beauty that needs to be put into this world.”

After I made aliyah to Israel, a Jerusalem Post reporter wrote about me, “Armed with intelligence, creativity, a sense of humor and an indomitable spirit, there are no challenges Cheri has not been able to meet head-on and prevail.” I try to make sure that continues to be true.

I ask God to give me the strength to cope. I live life one second at a time.

Whatever situation you find yourself in, at any time or in any place, if you are in the moment, doing what is called for wholeheartedly, you are fulfilling your purpose at that time.