Into the Impossible

Posted on November 24, 2009. Filed under: Uncategorized | Tags: , , |

At the age of 2 I was diagnosed, or rather I was misdiagnosed, with Werdnig-Hoffmann’s disease. This is more commonly known as Spinal Muscular Atrophy (SMA) which is a form of Muscular Dystrophy. At the time I was diagnosed, the diagnosis was based upon the date the symptoms become manifest. I was unable to crawl or walk. At the age of 2 neurologists diagnosed me with SMA Type 1. Most children with SMA Type 1 do not live past the age of 7. The very fact that I’m writing this at the age of 44 proves that I was misdiagnosed. I have also benefited greatly from modern medical advances.

Soon after my diagnosis, my parents adopted one of my brothers and several years later, they adopted my youngest brother. With a few notable exceptions, I was remarkably oblivious to my rather obvious physical disability until I was in middle school. There was the time when some teenagers, whom I presume were drunk, tried to run me off of Fulton Beach Road on a lazy Sunday afternoon. I wasn’t injured, but I was scolded for not driving my wheelchair into the ditch to avoid the pickup truck. Then at the age of 12 a security guard at San Juan Puerto Rico’s airport insisted that I stand up as we were going through customs to return to Houston. I know there was a language barrier, but I also think that the security guard was less than sensitive and lacked intelligence.

Being fairly bright and rather resourceful I was able to get around pretty well with the exception of steps, stairs and ladders. I found a way to get most any place I wanted to go and do most anything I wanted to do. I really became aware of my disability in junior high school. Until that time I played with the kids in my neighborhood. I drove my own wheelchair and played chicken with them on their bicycles. I guess we did the things that most kids do. In adolescence everything began to change. I had a serious respiratory illness in 7th grade and I missed most of the school year. My classmates in Our Lady of Victory were told by the nuns of that I might not make it back to school. In fact, I later learned that my schoolmates were told to pray for me every day. I’d been told by some of my friends that I was not expected to live, but I always thought that this was just “crazy talk”. I never really considered my own mortality until I was in middle school. I had always been successful in all my endeavors up to that age and I really believed in my own invincibility the way only young men can believe that. After attending Our Lady of Victory I took the opportunity to attend public high school and have a homebound teacher. I rarely actually attended high school since my teacher would bring lessons home to tutor me in all my classes. The fact that I had a crush on my homebound teacher was certainly an incentive not to actually go to school. Even with that incentive, eventually I became bored. I was frustrated and did not feel academically challenged. I begged my parents to let me attend St. Joseph High School. Although I lacked the necessary credits to stay in the same grade as my former classmates, I was generally regarded as one of the brightest students at St. Joseph High School. Many of my athletic friends didn’t seem to want to be bothered with me. My schoolmates would often treat me as though I was asexual telling me intimate personal details about their relationships. Dating did not seem to be an option for me, let alone any sort of intimate relationship. I felt like an outsider in many ways. Despite all that, I persevered and graduated from St. Joseph’s High school. By this time, my family was dealing with a significant financial reversal and I was told that I would not be able to attend the University of Texas at Austin. Rather I should attend The Victoria College and maybe I could transfer to the University of Texas later. Afterwards, I learned that many members from my family were concerned that I would not be able to make it living away from them in Austin. Eventually I graduated from The Victoria College and transferred to the University of Texas at Austin in the summer of 1987. Of course, that’s another story.

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    “The limits of the possible can only be defined by going beyond them into the impossible.” Arthur C. Clarke

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