Living My Life as a Computer
Hello, everybody!
You can call me Smurf because that was given to me from my friends that I have met over the years. Anyways, please excuse how I write this because I'm no author like Shane lol. Let's see how do I start this.
School with SMA
Well, growing up I didn't really know what SMA was. Just that I was different than others. School life was very confusing because I was disabled — yet not. my SMA started early so I was in a wheelchair at 5.
Because SMA doesn't affect the brain, I was held back because I was in a disabled classroom also known as OH. My teachers told my parents that I needed to be mainstreamed out because it was hurting my education.
So basically all my education was done in regular classrooms with the exception of like gym and one or two disabled classes. The only issue with me being the only one disabled in a class is if I didn't have a disabled van, I would have not been able to go with the class to field trips. Because they would not pay for a bus just for one wheelchair.
Spine surgery
During school is when I should have had a metal rod put in my back. because with SMA it makes me slouch because little by little I'm losing my strength to sit up straight.
I refused to get the operation. I saw one friend die, not necessarily from the surgery but it was in my mind. Another friend had an issue with it so I just couldn't. When I was in high school during my last few years is when I truly felt my disability kick in. I had gotten so weak within a year that I could not drive my wheelchair well anymore. I basically dropped out of high school because mentally I was having a issue understanding why am I getting weak. I even noticed I began to struggle swallowing.
Feeding tube leading to issues
At age 22, I needed to get a feeding tube put in my stomach. Not being able to eat my own food I was put on Ensure. Me being me, I wanted to feel normal again. I would blend food and put it in my feeding tube and put just a tiny bit in my mouth so my brain goes "Oh! this is good!" and that actually helped me retain and gain weight.
About 5 years later I began having breathing issues which technically I did die from for about 3 min. after that I was given a tracheostomy because I just struggled so much.
Strides in technology
Now I have basically became a real life Darth Vader. Now a new man literally, I was able to not struggle as I used to. During this period, technology took a big leap. Now everything can be controlled by a PC or phone.
Because I am a Nintendo kid, technology is my best friend. Wheelchairs are not just a battery, joystick, and motors. Now they are basically like smart cars. Now I can feel new experiences that normal people do easily...like turn on lights or change the tv.
Questioning treatments
Doctors said I wouldn't live past age 5, but I'm still here at age 39 and still going. To give the doctors credit though SMA wasn't a well known disability compared to what they know now. Now we have a drug to slow down the disability but for us veterans, (aka older generation), is it really going to make us better? In the end I am just a normal person.
My software is updated, but my hardware isn't able to maintain its functionality.
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