What Life is like with a Severe Disability

What Life is like with a Severe DisabilityHave you ever said to yourself I wonder what it would be like to live life with a severe disability? I’m sure you answered yourself I can’t imagine. As I’m sitting here writing this I wish I could say the same. I was diagnosed with Dubowitz congenital muscular dystrophy around the age of three. From the time I was born my mother says she knew something was wrong but it wasn’t until I was brought home and had to be rushed back to the hospital shortly after, that anybody knew for sure. Throughout my infancy I was prone to stop breathing for no reason at all and was so weak that I had trouble closing my eyelids to sleep. Doctors told my parents not to let me cry if at all possible for fear I wouldn’t be able to be resuscitated.

As I got older my health improved to the point where I wouldn’t stop breathing for no reason at all and at the stage where children are usually pulling up on stuff and learning to walk I was still learning to sit up by myself. Still even when I could sit up by myself the least little thing could knock me off balance. My lack of balance led to several concussions which ultimately led to minor brain damage. The only side effect were the migraines.

Still with all of the problems I had I never really felt different and I guess I owe a lot to my family and friends for that. Even though I wasn’t able to walk I learned to use my legs to push me around and scoot across the floor moving backwards.

I was also able to help myself use a urinal but I did need help with the bedpan. That is probably the worst experience of being disabled, having your mother and sisters wiping your butt is so embarrassing. However once I started hitting puberty my scoliosis started affecting my back, and my ability to help myself use a urinal quickly diminished. When a non-disabled person has to use the bathroom they get up and go. When I have to go to the bathroom I have to ask somebody. So I’m completely at the mercy of whoever this person is I have to hear I go to the bathroom too much, sighs, and hold on. If I want something to eat I have to ask somebody to get it for me. If I want something to drink I have to ask somebody to get it for me. I realize it gets annoying having to wait on somebody hand and foot, but I have no choice. It’s either ask for it or do without.

The scoliosis led me into my next diminished stage also. At the age of 13 I had to have Harrington rods fused to my spine and I spent a year laying flat on my back. I had to be fed and had to have somebody holding a drink for me. It was a really tough time.

The next year I started high school and threw away the back brace because it caused more pain than I was willing to bear. Which might not have been the smartest thing I ever did in my life. I wasn’t really looking forward to having a long life anyways my life expectancy was up. I’m supposed to kick the bucket any minute.

Then the unexpected happened I found love or so I thought. A girl with cerebral palsy who also went to the same school fell in love with me. We dated for about six months and then my mom started telling everybody we were going to get married and at my age that scared the hell out of me so I broke up with her. However it didn’t end there my mom continued bringing her to the house and eventually moved her in. I ended up quitting school in my 11th year and so we ended up spending day after day alone together. My hormones got the best of me and we started dating again.

When I turned 18 we moved out together and moved in with my cousin and her husband. Things didn’t work out so well but we did manage to get our independence even though we ended up moving back in with my mother. This time around things were different and me and Becky even started going to church which changed both of for the better, I think. Even though things were better this time, it was my mom’s house and it was her rules. There’s nothing like a place of your own and God granted our prayer. We found an excellent house that had been foreclosed on and it was $30,000 under the value of the home. Shortly after moving in we end up getting married.

I did everything I could to make her life complete. She wanted to be married and got it. She wanted her own home and got it but there was one more thing she wanted. A baby, all her friends were getting pregnant and having one. Night and day she complained how she would never have a child. I wasn’t ready, I was only 20 years old. However being confronted with the idea over and over again I began to warm up to the idea. This maybe my only chance ever to have a child. So even without the support of my family from which I understand their concerns, we continued on.

June 12, 1998 my little miracle was born perfectly healthy in every way. Namon George Kouri the 4th is the last Kouri to carry on my family name. Shortly after my son’s birth things turned dark between me and Becky and before either of us could know what was happening we were separated and I was in the hospital with severe pneumonia. With me on my deathbed we both had a change of heart and gave it one more chance. Unfortunately it didn’t work.

With Becky deciding to move out again I was now stuck with the dilemma of having no one to help take care of me. My family was so upset with me over the split they said they wanted nothing to do with me. So I got a couple of friends of mine to move in and take care of me. The arrangement was the rent was free as long as they helped me with what I needed. Being shunned by my family and church I turned my house into party Central. We partied every day and night unless we were allowed a visitation with our sons. One of my roommates was in the same boat as I was with his son.

Next thing I know I’m moving to Texas with one of my roommates on the promise of two jobs waiting for us at my dad’s warehouse. Of course that fell through and we almost ended up being homeless. Instead me and my friend split ways and I ended up living with my father things were really tough their, my independence wasn’t a choice it was mandatory if I wanted to stay. My stay their wasn’t too bad but because of my smoking I ended up in the hospital with pneumonia again. This time was much worse and I ended up having to be put on a ventilator. My condition was so serious that they had the Chaplin come down and talk to me. So before they put me under I called my family in Florida and reconciled with them. When I woke up they were there with me and when I got well enough it was back to Florida for me.

Six months after I moved back I met the love of my life and have spent the last four years with her. Although the last two years have been really rough due to my scoliosis. I’ve begun to twist even worse than I already am and I’m in constant pain and discomfort. This is what I most likely have to look forward to for the rest of my life but I’m thankful to God that I at least I had a taste of passion and happiness.