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Thirteen Thousand Days
In September of 1986, I woke up in Stony Brook Hospital. The St. James Fire department sent an ambulance to get me. I had respiratory failure. I was intubated on a ventilator, with tape all over my mouth. It was terrifying. I was unable to speak. I couldn't move much. They gave me a tracheostomy tube & feeding tube. I spent seven weeks in Stony Brook University Hospital. It is a scary and dangerous place to be in. I almost died a few times. It was an awful experience.
Today my life is difficult. I can’t do a lot of things I’d like to do. Id obviously love to go out and visit places but am confined to my bed. I also wish I could work on my art more easily, as I have very limited movement in my hands. I try not to think about negative things when the days get tough. You just can’t let it get to you. I’d advise watching an uplifting movie, play a trivia game or read a book. Keep your mind working no matter what. Even though I am not much of a social person, it helps to have supportive people around me. I used to be shyer than I am now, but my condition forced me to open up and be more comfortable with myself and my diagnosis.
Me and My Dystrophy~
Being born with a …. (Perry pauses, gazes up at the ceiling and shakes his head then continues) This is hard to speak about. Being born with a muscular disorder, that question always pops into your head; Why me? Why do I have this insidious, sneaky, slow, life destroying, out to get you… (pauses again in disbelief and finishes his thought stating) It has so many names. Pompe, Glycogen storage Disease type 2 … all the many names though come with many ugly faces.
Being young I started to question, why am I weaker, why am I short of breath? When I was around all of my friends, I felt different, afraid, horrified of their pity. Even more secluded from my family.
Finally I tried to explain to my parents that something is wrong, but no one believed me. They thought I was lazy, so on and so on.
Then in the 8th grade, I worked up the courage to tell my doctor. He was also quick to dismiss how rapidly I was growing and attributed it to an early adolescence\puberty experience.
My condition continued to get worse. I finally convinced my family Dr. to be removed from gym class in the 11th grade.
I was overwhelmed and alone. No one knew but me; This empty feeling I have.
Eventually when I was old enough to drive and had my license, I explored other doctors with my hard earned money. Just to be dismissed once more! Multiple professionals were reluctant to give me the time of day.
In 1972, a Dr Jacobs, a local general practitioner who I finally convinced to run bloodwork, diagnosed me with an unknown rare form of muscular dystrophy.
Today I live my life chained to a ventilator. Isolated from society. Lonely. I don’t feel a part of society, and am always worried, always struggling to keep what I have. Why should I keep on fighting ill question. And some days I don't know the answer to that.
What I will say to others who are struggling like me, is having good friends and family who truly care make things easier. Thankfully I feel loved. I keep my mind busy and hang on to hope. For me hope is a logical reasoning that gives me a larger purpose then the space I've been confined to.
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