Taryn Simpson
Category:
Memoir
A memoir I wrote for Jason Walker that details what it's like to live as a quadraplegic (Duchennes Muscular Dystrophy)
JASON WALKER BIO
Missing My Body is the story of one man’s courageous battle with Duchenne’s Muscular Dystrophy. Meet Jason Walker, an MD survivor with incredible faith, character and determination that far exceed his years. This is Mr.Walker’s first novel and he hopes to inspire others facing similar difficulties. He resides in Georgia with his family and beloved animals.
Excerpt
PHASE ONE
“Duchenne Muscular Dystrophy”
D
uchenne Muscular Dystrophy: Du•chenne Pronunciation: dü-'shen, d&-Variant(s): also Du•chenne's -'shenz/ Function: adjective Etymology: Guillaume Armand Duchenne died 1875 French neurologist : relating to or being a severe form of muscular dystrophy of males that affects the muscles of the pelvic and shoulder girdles and the pectoral muscles first and is inherited as a sex-linked recessive trait.
Duchenne Muscular Dystrophy affects only males, with rare exceptions. Unless a boy with DMD is known to be at risk because of his family history, he is unlikely to be diagnosed before the age of 2 or 3 years. Most boys with DMD walk alone at a later age than average. Then the parents are likely to be worried about something unusual in the way he walks, about frequent falling or about difficulty rising from the ground or difficulty going up steps. There is usually a typical style of walking which can be recognized and which is something described as waddling.
Whether standing still or walking, the affected boy usually has an exaggeration of the forward curve of the lower part of the back. The medical term for this is lordosis; non-medical people sometimes call it sway-back. A later development is a tendency to stand and walk on the forward part of the foot with the heels off the ground. Testing individual muscles or muscle groups reveals a pattern of weakness which is typical of DMD. How does Duchenne dystrophy affect people as they get older? At the time of writing there is no cure for DMD. The worsening of disability can be slowed by such measures as physiotherapy, but it cannot be stopped. On average, use of a wheelchair proceeds from occasional use at about age 9 years to almost total dependence by the early teens, but there is a range of severity to either side of this.
As the ability to walk is lost, the function of the hands and arms becomes increasingly important in determining the affected person's abilities. Most affected people survive into their twenties. A small minority survive only to their late teens, another small number to more than 30 years of age.
You now have a complete technical description of the disease. Somehow, reading the description above doesn’t seem to adequately cover the magnitude of pain, fear, weakness, and helplessness that one feels when they are afflicted with DMD. By the same token, it also doesn’t seem to adequately cover the magnitude of determination, fearlessness, strength and appreciation for life that one feels when they are afflicted with DMD either. The reason I am writing this book is to hopefully offer encouragement and hope, as well as give the reader an insight into what it is like to live inside my body. You’ll get a perspective from not only me, but my family, friends and others. Why? Because unlike most adults, I depend on others to care for me every hour of the day and night. You will come to understand how something as simple as breathing or brushing teeth will either involve hours of work, or it will require someone to do this task for me.
When I was a boy, I enjoyed playing video games and participating in sports. There are certain things that I can’t do now, although I was able to do them as a child. I don’t dwell on the things I can’t do. Instead, I concentrate on the things I CAN do. Which is why I wanted to write this book. I am able to give you, the reader an accurate, up-close view of what it is like to be me. To REALLY feel what it’s like to be a quadriplegic. After you read this book, you will be able to know what it’s like to be me.
By far, the most asked question I get is, “What’s it like to have DMD?” In an effort to answer that question completely and honestly, I will tell you what it means to be me.
Every moment of the day is a challenge. Within each of those moments are worries and dealing with different problems that must be resolved. Every night, I go to sleep and hope that I will see the next morning. At any time, an emergency can happen and it is up to either me or my caregiver at the time to resolve it. There isn’t room for error, unfortunately. Did I mention there is a lot of stress when dealing with a serious illness?
My thoughts are constantly focused on keeping aware that my circuit is hooked to my trachea and it is hooked up properly to the respirator. My eyes are constantly monitoring my machines to determine if there are any loose wires. I worry if the circuit will come off because after all; this ventilatory machine is what's keeping me alive. Any slight incident will send my anxiety level through the roof, which makes the breathing more difficult. Watching people around me, I hope and pray that no one will accidentally bump into my portable ventilator machine when I am out with family or friends. I am also constantly watching my parents that are operating the ventilator machine to make sure they are operating it properly. Common sense tells me that they have dealt with the machine for years and they are experts at manipulating it.
This is something that goes through my head every day, because the respirator is my life. I would have to say on a daily basis, the one and most important thing that is a worry is my ventilator machine and my breathing. Without the machine I cannot breathe and if I cannot breathe, then my race against death is over. Being that I have become worse and worse over the years, I worry about my health and I have consistently used antibiotics for two years now. I do what I can to help myself..
I am a person that keeps alot of things to myself as I don’t want to worry others. Living in my body is not an easy thing to say the least. Knowing that I am in the hands of other people rather than being responsible for myself is a strange feeling. If anything were to go wrong, someone else must fix the problem. I am also at the total mercy of my caregiver, which makes me exceedingly aware of my vulnerability. I take a cautious approach to daily things I do.
Whether it is watching people working with my respirator, or the simple thing of driving my wheelchair down the wheelchair ramp to go outside. Going up and down the ramp I worry that I will drive off the side.
Make no mistake about it, my life is consumed with worry and contemplation, but it is also consumed with love and joy for this life. Most people that suffer from a debilitating disease are “stuck” at the first phase of their limitations. If that were the case with me, then this would be the final chapter to this book. So, it is with a very conscience effort that this detail about my life occurs at the beginning of my book. There will be recounting of physical limitations and surgeries and so on throughout the book, but I feel it is imperative that you understand that these events are intertwined with loving, caring family and friends and my beloved animals.
There is a quote that likens my situation to that of a horse race: “Each handicap is like a hurdle in steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along too.”
That is how I choose to live my life, as fluid and graceful, as my body is stiff and confined.
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