Living With Dystonia

Deborah Deuel

By Deborah Deuel

 

My name is Deborah, I am 42 and I have lived with Dystonia for 32 years. What is Dystonia you ask? Actually, I had not heard of the word until a couple of years ago and imagine my surprise to finally have a name to acquaint to a disorder that I have carried since I was 10 years old. Dystonia is a muscle movement disorder and has a variety of movement configurations. Spontaneous spasms that can cause minor muscle twitching to out right grotesque twisting motions of the body.

Very little is known as to why this happens and what is the root cause that starts it. The medical profession can tell us what takes place within the body to cause the spasms but not what generated this dysfunction to occur in the first place. For me when I first became ill, the doctors of that time had no idea what I had and put me through a battery of medical tests and procedures. What started out as a stiff neck and an unusual contortion of the left arm turned into various stages of pain and twisting spasms affecting the entire left side of my body.

By the time I had reached the age of twelve, I had been poked and probed by the medical profession in their search for answers … everything from blood work to a spinal tap. Children’s feelings at that time (1969 - 71) where not readily considered to the degree they are today as to how things will impact on them long term. I was shuffled around in the hospital from test to test and given little information as to what to expect. To this day, some memories haunt me still, in spite of intense therapy around them. I was eleven and in the hospital for more tests. I was told this one was to test for nerve function to the muscles. I was wheeled down in a bed and left outside in the hallway of a long corridor. The nurse left me there to wait my turn. She told me to stay put and they would come for me in a few minutes. Shortly after she disappeared there was this awful screaming and crying. Behind closed doors somewhere a child was screaming as if something most terrible was happening to them. I was terrified and started to cry. The nurse reappeared after the child had stopped. In explanation to her questions as to why I was crying, I told her I was scared, she promptly reprimanded me and told me to stop being so damn silly. I had nothing to fear. She was rude and insensitive and I was now afraid of her as well. Turns out the test involved the attaching of electrodes to my skin in various places, which in turn were attached to this big machine. Then they stuck needles into me to stimulate nerve function for the machine to read. The needles were similar to acupuncture needles and could be why to this day I can’t stand the thought of having acupuncture done to me. :) 

However, by far the worst trauma that has stuck with me more than any other was when for some reason, known only to these doctors, it was decided that the best way to study this ‘amazing disorder’ (after a short while you get sick of hearing how amazing you are) was to have me (a now young girl of almost thirteen) stand in my underwear and undershirt as a panel of doctors sat just behind the glaring movie lights as they filmed me standing there twisting and turning in pain and in the complete humiliation of the whole experience. To this day having a camera of any kind pointed in my direction causes emotional trauma that no one can truly understand. Several methods of clearing this event trauma have helped to lessen the severity of my reaction but it is still painful.

The first few years of this were frightening and devastating in so many ways. Doctors not having any answers and trying experimental medications that I always reacted poorly to and the looks from family and friends … everything from fear to pity. In grade five, I had to deal with the issue that the muscles in the back of my neck had become so weak that I couldn’t hold my head up without support. For that entire year, every time I needed to walk anywhere or stand up I had to use my left hand to literally support my head from failing back. You see a view of the sky or ceiling isn’t always the best way to navigate a busy hallway or a shopping center. You do what you can to deaden yourself off from the physical pain you feel and the pain from all the stares and whispers. I had become the most well known girl in my small town – popular for being known as a ‘freak’. By the time I was in the sixth grade, the doctors had no answers and suggested it might be psychosomatic, so off I go to be analyzed.

I was separated from my home, family and friends and taken to a hospital for three months – no visitors. The time with the psychiatrist was actually quite helpful to me. Although it did not cure the problem, it did give me some survival tools to help cope with what seemed to be an unchangeable destiny. I went through years of being angry. Angry with the doctors, at people, at myself and the world in general – I was even mad at God. How could he do this to me! Life continued and so did the ever-changing landscape of this disorder. Sometimes the worst part was simply that I did not know what to call it when people would ask what was wrong with me. It wasn’t Parkinson or Multiple Sclerosis the tests had ruled all that out. At least today, when someone asks I can now say – Dystonia! Not like that changes anything.

There reached a pivotal point with the doctors. After failed attempts with medication after medication they only had one suggestion left, to surgically cut the nerve ending in the neck so there would be no stimulation instead of excessive amounts. This was considered irreversible surgery. I was sixteen by this time and basically told the medical profession their amazing and unique little guinea pig was no longer available for their research and removed myself from any further assistance. Do understand we are not talking about small town ‘quacks’ here, I was seeing the top neurologists in one of the most prestigious hospitals in Toronto, Canada – The Hospital for Sick Children. There were just no answers at this time.

I also reached a pivotal point within myself. I realized that there were two ways to deal with what had been dealt to me. I could stay angry and bitter or I could fight the odds and make the best of my life. Since I had already spent years being hostile and angry, I figured somehow I would give the other path a try. Life became a game of trade offs. I may have had to give up one thing but I would be determined to have other things in my life. When people would look at me as if to say, “you can’t do that” my immediate response was to show them - oh yes I could! Nine times out of ten – I did. I graduated with honors from high school, belonged to several activity groups and I loved sewing and sports, especially volleyball and swimming. Not always good at some of the sports and I am sure I looked very strange playing them – I did participate. I got my driver’s license at 18 and have had a clear driving record ever since. I attended college and I was married at 20 and had two incredible healthy sons while in my 20’s. I carried them full term and delivered both through natural childbirth, weighing in at 8 pound and 8.8 pounds. 

How did I do this and so much more? This disorder for me would change and mutate so to speak. A shifting of the area involved would take place when a couple of key factors would come into play. First off was the strength of my desire …. How badly did I want something? Secondly, the intensity of my focus or concentration on what I was involved in played a factor as well in how the disorder ‘manifested’ or rather didn’t manifest. The other factors that became very prevalent were stress, anxiety and my feeling of self-esteem.  Observations of how the disorder would change from good to bad with these ‘factors’ in play was noticed by myself and others close to me. It was almost as if when the pain or the spasms got so debilitating, or if the activity I wanted to do so important to me, it was as if I could will myself out of the debilitating scenario.

This got me to thinking that maybe there was something to the theory of this being psychosomatic. I contacted the psychiatrist I had seen in my early teens and started to work with him again. I was now about 26 and life had been very interesting and I had learned many things about human behavior through my own actions and the reactions of those exposed to me.

There were many things that unfolded during the next twelve years in therapy. Many of which had I not directly experienced them, I would probably doubt they were possible. During this time period rebuilding of my psyche took place, so to speak. There were fragmented parts of my personality that during various traumas had taken over the control of certain muscle groups … this, in my opinion, is what contributed to the ever changing landscape of the disorder. Many things of a metaphysical nature came into my understanding at this time. For instance, my being an Empath and how to deal with it. How a ‘walk-in energetic personality’ of ‘me’ from another lifetime came in and took over control of a terrified little girl so she would not choose to die. Many unique phenomena that had been a part of my life, that I wasn’t totally aware of, came forward as the integration of my personality took place. With the completion of this process over the twelve years, I had become very aware of my body and how it could ‘speak’ to me. I understood how stress and self-esteem affected the movements and I knew deep within me that this disorder was now very different then it was before.

This led me to pursue answers to the questions that had come up through therapy. Past lives, energy balance within the body, the power of thought or mind over matter. These things and the experiences I had of a more spiritual note led me to become a Nature Health Consultant. I now focus my work in the field of energy, sound and spiritual empowerment. I started to embrace my spiritual nature, which should not be confused with religion here. This spiritual and metaphysical journey and the experiences I have had with realities beyond this one, may someday find their way into a book.

It was through trial and error that I had found a place within myself where I was able to maintain 95% control the movements throughout most of the day. This was attained through a series of natural health tools. Diet and nutritional supplementation including a detox program, exercise for retraining the muscles coordination, chiropractic (a must for anyone with severe dystonia), stress management and trauma clearing and perhaps the most important key … the understanding of who we truly are. I am speaking here of connecting to your Spirit … of knowing your divinity.

This important aspect was demonstrated to me so clearly in the past three years. I was flying high on life, I had control of the movements and I was traveling on my own and doing things I never thought I could do. After my divorce, I was discovering who I was as a person and was embarking on a path where I was confident and self-reliant. Life was good and I felt sure that it would not be long before this still unknown disorder would be a memory of my past. Then it happened. My world came crashing down through a series of emotional and financial traumas. My health came down around me like a building made of glass, shattering all I had built up within my physical body. I was now 40, devastated at what was happening to me physically and totally fed up with living this life. This is when the importance of Spirit came full circle in my life.

Before this point I had a mental knowledge of having Spirit in my life and had experiences to know of the real power and beauty we are as human beings but what I had yet to do was to embrace that I was a spark of the Divine Spirit. With that embrace and the love and wisdom of an earth angel in my life (This earth angel is now my husband), I am seeing first hand how this disorder, which I had recently discovered has a name after all, is affected so directly by our self-esteem and the embracing of our Divine Spirit.

Upon discovering that there has been more research done on this disorder in the last 10 years then ever before is hopeful. To watch on television as a seventeen-year-old boy get his life back through the planting of electrodes in the brain is an encouraging scientific development. Had this technology been available at a point in my earlier years, when I was in so much pain and twisted torment, I too may have opted for that surgery. But it wasn’t then and even though today I am in pain and working hard to regain my physical strength and control back, from my experiences of what is possible, I would not choose this surgery today.

I did find the information very interesting that in order to find the malfunctioning nerve ends firing in the brain, the doctor ‘listened’ to how the sound changed. To me this was more encouraging than the outcome of the boy’s surgery. I am currently involved in researching with my husband the effects of sound in healing. More specifically, how the voice frequencies can be used to indicate imbalances within the biology of the body and how using that information you can create frequencies to balance the body’s physiology or what I call ‘your inner sound’. A sound that I believe is also connected to our Divine Spiritual Self.

So you might be asking by know why is she sharing all this information? What point is there to her story? I share this information, which really is only the tip of the iceberg of my experiences with such a debilitating disorder, in the attempt to shed light on the fact there is hope. Although difficult, painful and frustrating beyond belief at times, one can still live a full life. There are alternatives to assist with the pain and emotional frustrations and in my belief and experience there can be an elimination of such disorders as dystonia, chronic fatigue and fibromyalgia.

Also, I share this story so that you reading it would have some idea of the circumstance I go through in living my life and because I also have one pet peeve. It goes out to all of you that are healthy and in control of your physical body.  As frustrating as it is to be stared at and whispered about with eyes of pity or fear, I am saddened more by what many people out there cannot see. People labeled with disabilities will probably know more about ‘living life’ then many of you. When I hear those around me complaining about how frustrating life is, how they never have time to go here and do that, when they moan and complain about how life isn’t cutting them a break. I would truly like to smack them upside the head (with love of course). If you walk away from this article remembering anything, remember this!

The next time you see someone with a disability do not look at him or her with pity or fear, trust me, they will have experienced that enough for themselves. Instead ask yourself – Do I appreciate the life I have been given? Do I value the gift and freedom of movement that I have?  Do I truly embrace and appreciate my Inner Spirit?  Do I make the best choices I can everyday to embrace my life to the fullest?  Because I will tell you this … that person you are looking at and feeling sorry for is living their life to the fullest that they can. If given control over their bodies once again, they would not hesitate for one moment to move mountains and create miracles of joy in their lives and for others. They would not waste one beautiful moment of life. Don’t you!

 Life is a beautiful, precious gift - no mater how it is wrapped.  :)

Deborah can be contacted at deborah@innersoulutions.org

 

 

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