A Stirring Talk

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(This is the text of my talk given at the conclusion of the ST/Dystonia Symposium in Richmond, Virginia on Sunday morning, October 24, 1999. I followed after Beka Serdans, the subject of the Dateline segment on dystonia.)

I want to begin with a little background about myself for those of you who don’t know my story. I am an RN like Beka and I work in a high risk OB unit. I’m also a Marriage and Family Therapist working an internship and about a year and a half from taking the boards in California for licensure.

The first memory I have of any ST signs or symptoms was a college classmate commenting that I had a head tremor. I was about 18 or 19 years old and completely unaware of any problem. Then, in the 1980’s, I began to feel as though I was favoring my left eye when watching television, and that my head was turning ever so slightly to the right. Family members said they didn’t notice anything unusual. On Thanksgiving Day, 1989, my chin suddenly locked onto my right shoulder – I was having severe neck and shoulder pain at the time and also developed numbness in the left side of my face all the way back to the crown of my head on that side.

I have some family history of movement disorders. My brother and I are into genealogy and found my paternal grandfather’s death certificate stated the cause of death was listed as Parkinson’s Disease. He died in 1950 and, who knows, he may have had ST as well, but no one knew it back then. I remember a paternal uncle had what appeared to be an essential tremor, but he is deceased and the family has no other information. Then, there is me with ST, and, now, my daughter has been diagnosed with ST as well. (She is 25 years old).

I want to tell you about my journey with ST and how I have come to feel about it today. First, though, I want to preface my remarks with an observation I have made during the conference. I don’t want to offend anyone by what I’m going to say about my own experiences. I have noticed all of the couples here at the symposium where one spouse has ST and the other does not. I want to say how much I admire the spouses who stayed with their partners after the onset of ST as it is not easy to live with someone with this condition. I admire you for your commitment and the support you give your partners. But, in my case, this was not to be.

Perhaps, if it had not been for ST, I might never have been divorced. I don’t know. My husband of 25 years left about a year after the onset of my ST. Since then I have learned to be very independent, perhaps too independent at times, and to make it on my own.

If I had not had ST, I may never have lost my job. It is a long story I won’t go into here, but in one of the appeal hearings, called because my former employer denied me unemployment benefits; I learned that my head tremor was considered evidence of nervousness and therefore guilt! So if it had not been for ST, I may never have known what it felt to be jobless, unable to afford an attorney, to go before an administrative law judge and face my former employer across the table and to win appeals, both at local and state levels. I learned I can stand up for myself, fight and win, even when playing with the big boys.

If I had not had ST, I probably would never have gone on two medical missionary trips to the highlands of Guatemala. After my husband left, with ST in full swing, I had a need to do something to restore my sense of self-worth. The opportunity presented itself through two nurse friends who had made the trip the year before. If I hadn’t gone to Guatemala I would have missed so much. Some of the poorest people I have ever seen walked up to 2-3 days in their barefeet to receive medical attention from our team of doctors, nurses, and dentists. In their poverty these people maintained a simple, yet elegant dignity that touched me deeply. I experienced a great sense of humility and felt very grateful for what I have and to be living in this country. I also felt the “helper’s high” – the joy that comes from giving of ourselves to those less unfortunate.

If it had not been for ST, I may never have been forced to really examine my values and goals. I may not have realized how limited my future in nursing was and that it was in my best interest to find another occupation, one that I could sustain perhaps another 15 years or so. Thus, if I had not had ST , I may never have learned what it was to set lofty goals and achieve them despite seemingly insurmountable odds. It is still hard for me to believe that I actually earned a Master’s degree in counseling a little over a year ago, despite my ST.

If it had not been for ST, I may never have met Howard Thiel. Kathy Linderoth’s daughter and mine worked together and one day my daughter saw some ST literature at Kathy’s house and remarked that “my mom looks just like yours.” So I met Kathy, the first person I ever knew who also had ST. One evening Howard called me from Kathy’s house insisting that he wanted to meet me. I was exhausted from work and didn’t want to go anywhere, but he was very persistent. So reluctantly, I went, wet hair and all. Howard knows, I was a mess! He talked to me for about 15 minutes and declared that he thought I had ST. If it hadn’t been for Howard I wonder how long it would have been before I was officially diagnosed with ST (I was then at six years post onset), how long it would have been before I found a neurologist specializing in movement disorders, how long before I’d receive my first Botox shots, how long before I would have obtained any pain relief, and more importantly, how long I could have made it on my own? Thank God I don’t have to know the answers to any of these questions.

If I had not had ST, I wonder if I ever would have learned to trust again. Would I have been able to listen to others and allow myself to be encouraged and supported by people like Howard and the ST/Dystonia family? I just don’t know.

If I had not had ST, I might never have known what it is like to live with, and to try to adapt to living with chronic pain. I may also never have learned just how resourceful I am and that I am a survivor.

If I had not had ST, I wonder if I would have ever come to the conclusion that medical doctors don’t have all the answers, and be comfortable with that knowledge. I now know that I am alone responsible for my own health care. I’m certainly glad that I live in a time in which alternative therapies like acupuncture, massage, exercise, self-hypnosis, nutrition and even prayer are considered viable treatment modalities by many medical practitioners.

Without ST, I may never have learned that I can write, that I actually have a voice and something to say. I thank Howard for the encouragement and ST’/Dystonia for the opportunity to discover this previously buried talent. A high school teacher, eons ago, once advised me to obtain a degree in English and teach. Of course, this was the last thing I ever wanted to do. Funny how some things that are perhaps meant to be like English and writing, catch up with us whether we want them to or not.

Without ST, I may never have traveled to places like Montreal, Wisconsin, Toledo, and, now, Richmond, and shared a fantastic symposium weekend with the most incredible people I know, other ST’rs. It is at these events that I learned to laugh and have fun again. I have also learned to take better care of myself, to decrease stress where possible and to take frequent short trips away from the worries and responsibilities of work and family.

Without ST, I would have missed Howard’s stories and his strip act. I might never have felt the hope that Abby gives us ,her wisdom, faith and experience or been inspired by Harriett to change my eating habits. I would have missed Don’s unforgettable rendition of “”Alley Cat” in Toledo. I would also have missed the association with ST/Dystonia’s board members like Jacki and Hunz, Marcia, Darlene, Dr. Jim, Bonnie and all the others.

If it had not been for ST, I may never have learned to fly by the seat of my pants or to stretch my wings and fly right out of my comfort zone with God as my co-pilot, sitting right here on my shoulder. All of these things I have learned are not only useful in my life but are invaluable resources in my nursing and counseling careers. As you can see by now, I have come to regard ST as a blessing in my life, a blessing I am even able to say I am grateful for.

Susan Glass, MS, RNC

E-mail address: granmuzzer@aol.com

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand