Dystonia and the Jewish Girl



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Physically challenged woman doesnt give up - rather seeks to make a contribution to society - finds her niche in the world of fashion.

By Cheri Tannenbaum

I was in the midst of learning about my Jewish heritage. To further this process I decided to go to Stern College in New York and take a year of only Jewish studies. In the second half of the year, I started to put on weight, my handwriting became very sloppy, and my voice turned into a monotone. I didnt think much of this at the time but just decided to cut down on my midnight brownies from the food machine.

I went to an Orthodox Union and NCSY convention in Florida to listen to my brother give a speech on how NCSY had affected his life - and there I met the man that I would later marry. He went back to Los Angeles where he lived and I continued to finish my year at Stern College.

In July I went to camp NCSY outside of Los Angeles where he was the director. When camp was over I stayed the month of August in L.A. and lived with my grandmother. At this time I took a course in abnormal psychology at U.C.L.A.

One day while walking to the car after class my right foot began to kick my left foot. It only happenned sporadically, so I thought maybe I was unconsciously taking upon myself some of the symptoms I was learning about in my class. But the problem with walking became a constant and on going occurance.

Summers ended and it was time to go back to Vancouver, my home town, and wait for marriage.

One evening while I was in the kitchen helping my mother make a salad, she asked me a question, I couldnt answer her - my upper lip was so tight and so stiff that it wouldnt move! This together with my monotone made me totally not understandable. My father and siblings started to mimick me and make fun of me thinking I was only joking around. Then reality hit - I wasnt joking around - now, not only could I not walk properly, I also could no longer talk properly.

We decided that it was time to go see my family doctor, who proceeded to send me to a neurologist, who proceeded to give me the whole gamut of neurological tests in existence at that time. They all came back negative. According to this I was in "perfect health" (except for the fact that I could no longer walk or talk). So having no other ideas, I was sent to a psychiatrist who said I was sufferring from hysteria, probably due to the fact of my total life change.

So we married ignorantly thinking that a marriage, moving to a new city, and building a new home would snap me out of my hysteria.

Well, we were wrong. I kept going to different neurologists in L.A. where we now lived. Finally I found a Doctor who said to me "you aren't crazy, you have a very rare neurological condition called Dystonia Musculorum Deformance. This unfortunately has no cure because the cause is unknown."

Well at least I wasnt hysterical, which I knew all along, but of course no one believed me but this wasnt much better either.

At this point, my parents, with the means they had at that time, founded the Dystonia Research Foundation, gathering doctors and researchers from all over the world to try and find a cure for me. (This year was the Foundations 30th year anniversary and they have helped many many people, but ironically not the person it was founded to help). I do not fit into any of the cateogories of Dystonia, so now 36 years later I still dont have a primary diagnosis, but if I get one, I joke with my father and tell him that he will have to start a new foundation to find the cure for whatever my primary problem is.

So in the meantime I started going to U.C.L.A. to get a bachelors degree in psychology, while at the same time trying myriads of medication in the hopes of helping my affliction. From all of this, I have learned the gift of patience - starting a medication, waiting for it to be at the desired dosage level, in order to have its supposed effects only to find out there are no effects, so its on to the next one, and the next one, and the next one - unfortunately only a few had a any effect, however small, but they were shortlived at that.

I got my bachelors degree, during which I had the opportunity to do some lab work with special needs children. I found that children under the age of 5 could understand me quite well, probably because they still didnt have an established language pattern. I got tremendous satisfaction working with these children, so I went to another college in Pasadena to work on getting my special education teaching credential. I was 3/4 the way through my course work and I started to apply for the credential. I was told that in order to get a special education credential I would first need to get a regular education credential. I knew that there was no way I could teach a group of 30 rowdy youngsters with my speech problem. Not being one to be thrawted from achieving my goal I decided to petition that this recquirement be waived, but my petition was denied. I ended up doing a thesis and getting a masters degree in human development (whatever that is).

So still searching for something to do, I realized that I loved clothing and had a real knack for puttting clothes together in very interesting ways. Aha, I applied and started fashion design school. I had no desire to design clothes, plus I couldnt draw worth beans so after the first year they suggested that I not continue. Once again not willing to be thwarted in my pursuit, which was really to learn how to dress windows, I sent in a petition, but they said to me that with my physical problems this job would be too dangerous and too difficult for me (having to climb ladders and move heavy mannequins) so still searching, I looked through a catalog and found a jewelry making course and the rest is history.

I loved it - my creativity flowed and I began making one of a kind necklaces out of beads. I used a lot of large beads and made funky, lively, gay necklaces. I would wander the world and look at everything and think of how I could put whatever I saw on a wire to be incorporated into a necklace

On the other side of my life for 13 years I had been taking medications in the hopes of getting better, but to no avail. One day after reading again the Torah portion of Genesis, I had an epiphany - I felt that wouldnt have really fulfilled one of the purposes of being a woman unless I had a child. Against my doctors orders who told me that I would have a 50/50 chance of having a sick child, I gave birth to a girl, Orit, who today is 21, perfectly healthy, and married with a daughter of her own.

Then we moved to Israel.

I had turned 40, and the doctors confessed to me that they really dont know what I have, so we don't feel that it is genetic. I proceeded to have two more children: a daughter who today is 12 and perfectly healthy, and a son who today is 10 and perfectly healthy - thank G-d.

One evening I went to a class in our Yishuv given by a local rabbi on the importance of shatnez (the Torah prohibition against wearing a garment containing a mixture of both wool and linen). We realized that there was no one locally who checked for shatnez. It was the height of the intifada so I thought to myself how careful are we Jews being in the mitzvah of shatnez when it was necessary to take clothes all the way into town to be checked and risk being shot on the road?? Probably not too careful.. so I voluntered for the job (not knowing at all what I was getting myself into ) It took two years until I got an O.K. from a authoritive rabbi saying that I, as a woman, would be allowed to be trained in shatnez.

One day I walked into the lab and I saw the most beautiful skirt that I had ever seen. It was made entirely of mens neck ties. A seminary girl whose mother had sewn it for her had brought it in to be checked for shatnez. For weeks and weeks I kept envisioning this skirt in my mind and.... once again ... the rest is history:

I began to accumulate used ties from people via the internet, and proceeded to make my own tie skirts. I tried to find this girl to see if her mother would like to help me, because I felt guilty for stealing her idea, but I couldnt find her. I checked with a patent lawyer who told me that one can't patent a design and after checking on the web and finding a few sites that had tie-skirts (nothing like mine ) my guilt was assauged. Tie skirts are very heavy (unless you open them up, which I discovered later), thus I made up a label that says "deisgns by cheri, heavy in your arms light on your body". I didnt want someone to pick up this skirt and say ooooh its sooooo heavy and put it down right away without trying it on and feeling how light and comfortable it really is. So I've been making tie skirts - once again - one of a kind all - different colors and all different styles. BEAUTIFUL, if I say so myself.!!!

I took many years of speech therapy which taught me what I should do to make myself more understandable, but 99% of the time my mouth mechanism wont co-operate with me so I cant really apply it. One trick I was taught which helped me was to hold my nose when I spoke.. This prevented air from escaping so I was a tiny bit clearer.

When I found the courage to use this technique the immediate response was "oh do you need a tissue"? After trying to explain that this is how I speak because it helps to make me more intelligible, I would get a variety of other responses. People would yell very loudly when they spoke as if I was deaf or people would raise their voice and talk very slowly enunciating very clearly as if I was retarded,or people would whisper to me as if I was something strange. Some people would even use various hand gestures as if I was deaf,

So thus was created my other mission in life - to try to sensitize people to differences. Now using my trusty Palm Pilot type device (thank G-d for technology! ) when I hear people saying, "Oh she's deaf," or "Oh, she doesnt understand you," I will write to them on my Palm Pilot and tell them that no, I am not deaf, I hear you perfectly well, or yes, I do understand you perfectly well. This is in the hopes that when they encounter another person with "problems" they will hopefully remember the encounter they had with me and will respond appropriately.

One example that I clearly remember is when I walked into a store to buy a gift for a friend. The sales woman kept saying, "Oh, this mizkeyn, (poor unfortunate) she wants this. Can you please help this mizkeyn and on and on using the work mizkeyn. Finally I had had enough and I wrote to her I am not a mizkeyn. Well she really finally looked at me and somewhat startled said you are right you are not a mizkeyn, I am very sorry.

Dystonia, or whatever this affliction that I have, is not something I can ever get used to, or forget about for even one second. It is not like having a broken pinky when the only time you are reminded that your pinky is broken is when you need to use it to clean you ear. No, anytime I need to make a move, there it is, and again, anytime I need to say a word, there it is again.

Communication and mobilization is the way of the world. When you are affected in both these areas,life is a constant struggle. But with my faith, my fighting spirit, my courage, my creativity, my sense of humor, my supportive children and husband, I keep going....ONE SECOND AT A TIME.

If there is any kind soul out there who would be willing to help me get my interesting creations out of my duffle bags (my necklaces) and off my hangars (my skirts) and out of my house to adorn beautiful womens necks and bodies, I would really appreciate it.

Thanks so much for reading my tale and I hope it affects you in the possitive manner that it has affected me.

Contact Cheri Tannenbaum at cherbelz@yahoo.com


from the August 2007 Edition of the Jewish Magazine

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