Hey everyone, this week I will be straying away from the games and talking about what it is like living with a disability. You may be wondering why I am discussing this. Last week’s article was shared from the UK for a good reason, that reason was because I talked about adaptive technology for disabled gamers. So now you get to hear what it’s like having the ups and downs of a disability.
Let’s back track about 21 years now to when I was born. I was not a normal small child, as I find it funny to say, when my parents noticed I wasn’t doing the normal small child things that small children do. I also was diagnosed with a cataract in my left eye when I was a year old and had it removed. Turned out that my left eye is also partially blind or legally blind. Doctors thought I could only see shadows but actually I can see normally but out of the corner of my eye. My right eye, on the other hand, is mostly fine. When I say mostly fine, I mean I can see fine but I have to wear glasses due to astigmatism but we’ll get to that later.
2 years later, a doctor had done a femoral shortening and that actually caused me to lose balance when I would sit up. When I was recuperating in the hospital, I did not stretch out my arms because of an I.V. Four days later, I had contractors in my arms which caused my wrists and my arms to not fully stretch and I still have them to this day including my legs and feet. The surgery also caused me to get scoliosis which gave my spine an S curve due to leaning when I sat up.
When I was 4, I had a feeding tube placed around my stomach so that way at night I could get extra nutrition to gain weight. I was a very underweight child because I wasn’t getting enough nutrition because of my mysterious disability. It had helped me gain some weight but not enough.
When I was 5, I was diagnosed with a rare form of Muscular Dystrophy called Merosin Deficient congenital Muscular Dystrophy or MDC1A for shorter, easier terms. You can get a better description of what it really is here. This was a surprise to my parents as they never thought their first born small child would have a rare form of MD. I consider it a gift as a way to bring awareness to the disabled community. There is no treatment or cure for it as Muscular Dystrophy Association does not consider it money making because it’s rare.
When I was 6, my lungs had collapsed and well, I almost died. It sounds bad to say that but something had saved my life. It’s called a tracheostomy that you can read about here. I have a trache still and it will be the 15 year anniversary in August or September this year.
Then 2 years later, I almost died again because anesthesiologists had changed my trache after I had anesthesia which relaxed my muscles and had been a problem. Trache changes were easier when I was awake but the reason I was on the cold silver operating table was because I needed spinal rods for my scoliosis. The rods were not permanent but had to be lengthened every 6 months because I was growing.
3 years later my vision in my right eye was getting bad so I went to an ophthalmologist and he diagnosed me with astigmatism which you can read about here. He gave me the choice of either wearing contacts or glasses and I chose glasses because no one needs to be touching my eyes. I still wear glasses and look cool in them but that’s just my opinion.
Within a span of 5 years, I had 2 different surgeries. They were not at the same time in case someone gets confused. I had a different set of spinal rods fused to my spine and they are permanent. The other surgery was releasing the tendons in my arms which didn’t help any. I was in the hospital for a couple weeks from the spinal fusion. The rods have straightened my spine as best as possible.
Then when I was 18, I was again in the hospital fighting for my life because I had really bad breathing and other problems. I was in the hospital for the whole month of October and in that whole month I had been diagnosed with pulmonary hypertension which is discussed here. My parents and I believe it was from an air leak around the outside of my trache that I had for many years due to a goof up from a surgery. So I switched to a different style of trache that has a balloon which inflates and causes my voice box to be mute. When it deflates, I get to talk again. The real reason why I have this style is because the air leak is temporarily gone when I inflate the balloon. The cardiologist prescribed me with a medication called sildenafil which you can read about here.
Let’s jump to present day. I’m super healthy and happy with the way things are going with my body and hope it stays that way knocks on wooden desk.
Here is your motivation to get you through the work week https://www.youtube.com/watch?v=w5tWYmIOWGk