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My story in a wheelchair

Updated on June 3, 2016

Wheelchair life

My life in a wheelchair, 12 years on; this is my story of what life has been like for me since landing in a wheelchair. I will start with now, I am 36 and became disabled when I was 24 years old. I have quite a few medical problems before the chair so this was just another issue to deal with for me.

On July 15th, 2004 I was diagnosed with GBS or Gullian-Barre Syndrome. When I was given the news I was in a hospital bed. My parents were there so I asked them to go find any information on this so I could figure it all out and have a better idea of what I was dealing with. GBS is an auto-immune condition that effects the peripheral nervous system. For me and most people affected with this condition it started in my feet. They just felt like they were asleep but in actuality what had happened was that the myelin, the coating that protects the nerves, was being attacked by my own immune system mistakenly. When I woke up that morning I tried standing up and fell down a few times before realizing something was wrong. I called my local doctor and he told me to come to his office at 7 am. He came in to talk to me and look me over and then excused himself to look some things up. He came back and said he had no idea what was wrong with me. He had called an ambulance to take me to the University Hospital in Columbia Missouri. By the time I arrived there I was paralyzed up to my hips.

As soon as I arrived at the hospital I was moved upstairs. Within about 4 hours I was diagnosed with GBS and then after reading all the material my parents brought to me I was better informed on what to expect in the worst case scenario, which is what eventually happened because that is what always usually happens to me. Within about 3 days I had to be put on a ventilator because the paralysis reached the muscles of my lungs and I was not able to breath on my own. At around this time I am not able to remember much but I do remember that I was not able to blink my eyes for, what I was told, about 5 days. This requires me later to have my eyelid stitched, which was some of the worst pain I have experienced during this ordeal. The next thing I remember is the doctors asking me where I wanted to go for rehabilitation to get the vent tube hopefully taken out. I chose a Select Hospital close to Kansas City, since I have some relatives that live there. And this leads to the closure to my story of coming down with GBS.

While at this hospital the nurses tried to teach me to communicate by blinking, which is very nerve racking and especially so for someone whose nerves are not working right anyway. At that time I was able to move my head left or right and blink my eyes but was unable to speak since I had the tube down my throat. It was very surreal and I was like this, paralyzed for almost 12 weeks. I was unable to speak for about 8 weeks, until they were able to lower the size of the vent because I was getting better. But during the time I was unable to speak I basically forced the nursing staff to read my lips. I am sure it was very frustrating to them as well but at least they weren't in my shoes. I was in a private room where I had my own T.V., since I was not able to use the remote control we left it on one channel, The History Channel. Back then they played actual history programs. I have always been big into history and consider myself now to be a history nerd.

That is the end of that part of the story, I'll be back to add more of what life was like for me after getting off of the vent. Later.

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