Post by thatgimpyguy on Aug 7, 2012 21:23:21 GMT -5
I was thinking about this the other day and was curious as to what other wheelers experienced regarding this topic. I guess devs could relate to this too, but the question is, when did you know you were "not like other people?" That is to say, was there a moment or event that made you self aware of the challenges you would face with your disability, and I guess devness? Granted, I realize the answer evolves differently if you were born a sexy wheeler, rather than become one after a SCI, but are there any stories you have that made you know you would never be like the able bodies? Of course I mean not just seeing you had to use a chair, but more of the realization that the chair is a part of you. I can only describe the experience of being born this way because, well, I was, but what are yours? And this goes for devs too.
When people asked me what I wanted to be when I grew up, I would always say, “I always wanted to be a stand up comedian, but was never really good at the standing up part.” When people ask me what is it like to live with a physical disability, I say, “It’s great because I always win at musical chairs.” Humor is the best way we can relate to one another. It crosses race, creed, and gender, it creates comfort in things we don’t understand, but I think there are certain instances in life where we forget to find the humor in things. To find that connection that makes us relatable. There are moments when laughing at the absurdities we face seems ridiculous. There was one of those moments in my life where I had to find what was humorous again. However, I think in order for someone to find the comedy in things, you must go through the darkest of darks to get there.
As I said in an earlier post, I have Spinal Muscular Atrophy. I'm sure you all know what that is, but in case you don't, it’s a genetic disorder that prevents my muscles from developing and eventually, making them disappear. I’ve seen myself lose the ability to do many things. From standing, to writing, to even drive a standard wheelchair, but as a little kid, I never really noticed I was different. Of course I saw I was the only kid in class using wheels to get around rather than my feet, but for some reason it wasn’t a big deal.
Unlike most kids, and I'm sure some of you wheelers can relate, I had to interact with adults on an equal playing field. From doctors, to therapists, to nurses, so I always felt like I grew up fairly quickly. It’s not every second graders Friday after school plans to discuss the marital problems with their nurse, but that’s what was normal for me and made me grow up pretty fast and made me feel I had a better understanding of the world than most kids. I would say to a classmate, “Hey dude, this Bush/Irag situation with Saddam is crazy, huh?” For which I would get, “What’s an Iraq?… Wanna go play Thundercats?” When I entered third grade though, I think that crash course in maturity got the best of me.
The summer before and even the year before that was spent partaking in sporadic “new agey” style “treatments” my mom discovered to try and “cure” me. One experimental procedure was injecting sheep cells in me that would hopefully regenerate as “corrective human gene’s” that would replace my defective ones. As this was not legal in America, we hopped on a plane to go where everything is legal…Mexico! One distinct memory I have from these trips are the live chickens running aimlessly in and out of the “hospital” waiting room. Another one of these experimental treatments I had to try was a theory that if you could train your body and mind to think it was in the womb again, it would then redevelop and hopefully “fix” what was wrong. These treatments, which were weeks at a time, consisted of being in darkness for 10 hours a day, in silence, in various “womb recreation” apparatuses. A few hours laying on a plastic slab covered in oil, a few hours suspended in a tank of water, lunch under black light, then a few hours in the fetal position inside an empty car tire. My mind never went back to the “womb state,” it just replayed episodes of The Simpsons over and over to keep me occupied until the hippies who were in charge said I could go home.
Needless to say, none of these treatments did any good. I entered third grade with my mom still hopeful. She never stopped looking for ways to make me like everyone else. My brother had died of the same disease a few years prior and she never stopped making sure that wouldn’t happen again. She always was in that tunnel of darkness, reaching out at the light at the end of it, but never seemed to be able to grasp it with her fingers. I too was in that tunnel. I used to be able to see the light that provided hope that this wasn’t going to last forever, but unlike my mom, the spark was quickly turning dark and there was no light in front of me anymore. I came to this realization that they, my parents, the doctors, were leading me on, that they were on a never ending quest of belief on their own. It seemed as though I was the only one who knew I wasn’t going to get better. As if I was the only one who discovered Santa Claus isn’t real and they were still staying awake on Christmas Eve, waiting for him to come down the chimney. It was then I truly realized I was on my own on this journey. It hit me for the first time that I was going to be this way, and get worse, for the rest of my life. For an eight year old, that’s some heavy stuff. I should have been thinking how the Ninja Turtles were going to defeat Krang and Shredder that Saturday morning, but something a lot darker was on my mind. Forever sounded like a long time. Forever included not getting a driver’s license, not living on my own, not dancing with a prom date, I played out every scene in my head of what I was going to lose and miss out on that I saw the adults in my life experience. Something inside me just turned off and I didn’t know how to be a kid again.
For a week or two I didn’t really talk to anyone. I had to prepare myself for my “new reality.” I kept on a demeanor that everything was fine. I was good at being the “goofy funny kid,” so I let people still believe that was the case. I didn’t want my family to know I was the only one who saw this reality and lost the hope they still had inside them. No, this was on me now, and it was my job to decide what “treatment” was best for me. At the time however, the only treatment that seemed logical was to get out while I was ahead. I didn’t see the point of living out the rest of my days a broken mistake. I decided I would rather die than endure that kind of struggle. I admit, I was weak. So, the day came where I finally mustard up the nerve to go through with it. I don’t remember the exact date, but I remember it was the end of summer. In Indiana, where I grew up, the end of summer meant the leaves were changing, but it was still muggy and hot to not officially call it fall yet. I sat at the end of my driveway. It was the afternoon because the rest of the kids in the neighborhood weren’t home yet from school. My bus always was the first one to reach my neighborhood. I was hot, trying to shake the bangs off my sweaty forehead. I looked both ways of my street that went in a giant circle. I cried, telling myself if I was going to do it, now is the time. I looked right, then left, and that’s where I saw my opportunity. The bus that carried the rest of the neighborhood kids was just making its way around the bend. “Now,” I said to myself, and as a gripped the neon green bouncy ball that served as the head of the joystick to my wheelchair, I began to make my way toward the bus. I pushed my joystick as hard as I could, and even though it could only go so fast, it felt like the harder I pushed it the faster it went. I got closer, aiming directly in front of it, my body shaking, screaming as loud as my barely working lungs could be. Then, just as the front black grill of the bus was an arm shot away from me, I closed my eyes, but as I kept going, I didn’t feel any metal hit me, I was still breathing, I opened my eyes and saw the bus had quickly curved. It drove right around me at the last second, leaving an empty street in front of me.
I turned around and saw the yellow school bus drive away. I sat in the middle of the road for a long time after that. When the rest of the kids started to come out of their houses and started playing in the front lawns, suddenly I didn’t feel the need to leave anymore. They were all different, so why couldn’t I be? Somehow seeing in that moment all the differences made that eight year old feel normal again. And even though the road he was on was going to be difficult, that sometimes it may feel as though high fiving a bus might be the easiest way to go, being the way he was wasn’t broken. It wasn’t a mistake…I saw myself back in that tunnel again, the one in the darkest of darkness, but this time, instead of seeing nothing in front of me, there was a small spark again. Not a spark that would make me better, not a flicker that would cure me. No, the light at the end of the tunnel was hope in myself. Hope that no matter what my life was going to be like, I wasn’t going to let it be any different than the other kids in the lawn.
I drove home, making sure the tears on my face were dried up, and as I entered my garage door to enter my house, I saw my sister playing Nintendo in the living room. I looked at her and said, “Wanna go play Thundercats?”
When people asked me what I wanted to be when I grew up, I would always say, “I always wanted to be a stand up comedian, but was never really good at the standing up part.” When people ask me what is it like to live with a physical disability, I say, “It’s great because I always win at musical chairs.” Humor is the best way we can relate to one another. It crosses race, creed, and gender, it creates comfort in things we don’t understand, but I think there are certain instances in life where we forget to find the humor in things. To find that connection that makes us relatable. There are moments when laughing at the absurdities we face seems ridiculous. There was one of those moments in my life where I had to find what was humorous again. However, I think in order for someone to find the comedy in things, you must go through the darkest of darks to get there.
As I said in an earlier post, I have Spinal Muscular Atrophy. I'm sure you all know what that is, but in case you don't, it’s a genetic disorder that prevents my muscles from developing and eventually, making them disappear. I’ve seen myself lose the ability to do many things. From standing, to writing, to even drive a standard wheelchair, but as a little kid, I never really noticed I was different. Of course I saw I was the only kid in class using wheels to get around rather than my feet, but for some reason it wasn’t a big deal.
Unlike most kids, and I'm sure some of you wheelers can relate, I had to interact with adults on an equal playing field. From doctors, to therapists, to nurses, so I always felt like I grew up fairly quickly. It’s not every second graders Friday after school plans to discuss the marital problems with their nurse, but that’s what was normal for me and made me grow up pretty fast and made me feel I had a better understanding of the world than most kids. I would say to a classmate, “Hey dude, this Bush/Irag situation with Saddam is crazy, huh?” For which I would get, “What’s an Iraq?… Wanna go play Thundercats?” When I entered third grade though, I think that crash course in maturity got the best of me.
The summer before and even the year before that was spent partaking in sporadic “new agey” style “treatments” my mom discovered to try and “cure” me. One experimental procedure was injecting sheep cells in me that would hopefully regenerate as “corrective human gene’s” that would replace my defective ones. As this was not legal in America, we hopped on a plane to go where everything is legal…Mexico! One distinct memory I have from these trips are the live chickens running aimlessly in and out of the “hospital” waiting room. Another one of these experimental treatments I had to try was a theory that if you could train your body and mind to think it was in the womb again, it would then redevelop and hopefully “fix” what was wrong. These treatments, which were weeks at a time, consisted of being in darkness for 10 hours a day, in silence, in various “womb recreation” apparatuses. A few hours laying on a plastic slab covered in oil, a few hours suspended in a tank of water, lunch under black light, then a few hours in the fetal position inside an empty car tire. My mind never went back to the “womb state,” it just replayed episodes of The Simpsons over and over to keep me occupied until the hippies who were in charge said I could go home.
Needless to say, none of these treatments did any good. I entered third grade with my mom still hopeful. She never stopped looking for ways to make me like everyone else. My brother had died of the same disease a few years prior and she never stopped making sure that wouldn’t happen again. She always was in that tunnel of darkness, reaching out at the light at the end of it, but never seemed to be able to grasp it with her fingers. I too was in that tunnel. I used to be able to see the light that provided hope that this wasn’t going to last forever, but unlike my mom, the spark was quickly turning dark and there was no light in front of me anymore. I came to this realization that they, my parents, the doctors, were leading me on, that they were on a never ending quest of belief on their own. It seemed as though I was the only one who knew I wasn’t going to get better. As if I was the only one who discovered Santa Claus isn’t real and they were still staying awake on Christmas Eve, waiting for him to come down the chimney. It was then I truly realized I was on my own on this journey. It hit me for the first time that I was going to be this way, and get worse, for the rest of my life. For an eight year old, that’s some heavy stuff. I should have been thinking how the Ninja Turtles were going to defeat Krang and Shredder that Saturday morning, but something a lot darker was on my mind. Forever sounded like a long time. Forever included not getting a driver’s license, not living on my own, not dancing with a prom date, I played out every scene in my head of what I was going to lose and miss out on that I saw the adults in my life experience. Something inside me just turned off and I didn’t know how to be a kid again.
For a week or two I didn’t really talk to anyone. I had to prepare myself for my “new reality.” I kept on a demeanor that everything was fine. I was good at being the “goofy funny kid,” so I let people still believe that was the case. I didn’t want my family to know I was the only one who saw this reality and lost the hope they still had inside them. No, this was on me now, and it was my job to decide what “treatment” was best for me. At the time however, the only treatment that seemed logical was to get out while I was ahead. I didn’t see the point of living out the rest of my days a broken mistake. I decided I would rather die than endure that kind of struggle. I admit, I was weak. So, the day came where I finally mustard up the nerve to go through with it. I don’t remember the exact date, but I remember it was the end of summer. In Indiana, where I grew up, the end of summer meant the leaves were changing, but it was still muggy and hot to not officially call it fall yet. I sat at the end of my driveway. It was the afternoon because the rest of the kids in the neighborhood weren’t home yet from school. My bus always was the first one to reach my neighborhood. I was hot, trying to shake the bangs off my sweaty forehead. I looked both ways of my street that went in a giant circle. I cried, telling myself if I was going to do it, now is the time. I looked right, then left, and that’s where I saw my opportunity. The bus that carried the rest of the neighborhood kids was just making its way around the bend. “Now,” I said to myself, and as a gripped the neon green bouncy ball that served as the head of the joystick to my wheelchair, I began to make my way toward the bus. I pushed my joystick as hard as I could, and even though it could only go so fast, it felt like the harder I pushed it the faster it went. I got closer, aiming directly in front of it, my body shaking, screaming as loud as my barely working lungs could be. Then, just as the front black grill of the bus was an arm shot away from me, I closed my eyes, but as I kept going, I didn’t feel any metal hit me, I was still breathing, I opened my eyes and saw the bus had quickly curved. It drove right around me at the last second, leaving an empty street in front of me.
I turned around and saw the yellow school bus drive away. I sat in the middle of the road for a long time after that. When the rest of the kids started to come out of their houses and started playing in the front lawns, suddenly I didn’t feel the need to leave anymore. They were all different, so why couldn’t I be? Somehow seeing in that moment all the differences made that eight year old feel normal again. And even though the road he was on was going to be difficult, that sometimes it may feel as though high fiving a bus might be the easiest way to go, being the way he was wasn’t broken. It wasn’t a mistake…I saw myself back in that tunnel again, the one in the darkest of darkness, but this time, instead of seeing nothing in front of me, there was a small spark again. Not a spark that would make me better, not a flicker that would cure me. No, the light at the end of the tunnel was hope in myself. Hope that no matter what my life was going to be like, I wasn’t going to let it be any different than the other kids in the lawn.
I drove home, making sure the tears on my face were dried up, and as I entered my garage door to enter my house, I saw my sister playing Nintendo in the living room. I looked at her and said, “Wanna go play Thundercats?”
