Living With Dystonia |
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By Deborah Deuel |
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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. :)
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Deborah can be contacted at deborah@innersoulutions.org | ||
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