So it’s been quite awhile since I last posted. There has been a ton of stuff that has been happening but I just ran out of motivation to write about it. My pendulum swung the other way for a bit, where anything I started to write I deleted because I felt self conscious about it or I was just angry and decided what happened was my business and everyone else could go piss up a rope. Even as I am writing this I have the intense urge to just say screw it and erase this whole thing.
But anyway this past week I have been trying to find some introspection on cerebral palsy and how it has affected my life. This past week at work we had our annual United Way fund raiser and one of the speakers spoke about his son who has CP and the services he received from Happiness House which specializes in services for people with disabilities. Their focus is mainly CP and other brain injury. For those of you who don’t know CP is:
While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.
Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oromotor functioning.
**www.cerebralpalsy.org
I was born with cerebral palsy caused from lack of oxygen to my brain during birth. It has affected everything in my life, but I was very lucky that my symptoms are very mild. My muscle coordination is impaired, I have trouble with my hands, my joints, especially my hips are very tight, and I have a pronounced tremor.
The two hardest things I had to deal with growing up were my hands and my tremor. My fingers and knuckles are really tight, but my thumbs are the most affected. They get very stiff and I really have to concentrate to move them. Growing up I had to go to a physical therapist at school to “exercise” my hands. She would roll a large wooden egg into the webbing between my thumb and index finger to stretch them out and ease some of the muscle stiffness. She helped me learn to write using large grip adapters for pens and pencils, but eventually gave up and let me work out my own position system for writing. Where most people write holding the pen between their thumb and index finger, I write with the pen between my middle and ring finger. I hold my fork that way too. When I eat a sandwich, I don’t grasp it between my thumb and fingers, I’ll hold it between my index and middle fingers, using them like tongs or pincers. So growing up I got a lot of strange looks when I had to eat or write.
The tremor was much worse for me because it was so pronounced that everyone noticed. From elementary school through high school my head would bob and weave and create its own irregular orbit around my neck. It is all involuntary and I think that is a reason my neck is so large today. I think that all of the muscles firing in my neck got strengthened to keep my head steady. In addition to my neck I have routine involuntary muscle spasms/twitches where parts of my body just move or lurch. I’ll be lying in bed flat on my back and my shoulders will clench and contract causing my arms and chest to move as well. As I’ve grown older and started working out, I have strengthened my muscles and that helps to reduce my tremor. It is still there and visibly noticeable, but reduced. It becomes much more pronounced if I am concentrating or someone says the four words I absolutely hate to hear, “Try to stay still”. The minute someone says that I become acutely aware of just how much I am moving, so I concentrate on stopping it which just makes it that much worse. I recently went for about six acupuncture appointments and that was a struggle to lie still while she put numerous needles in me, but fortunately she was very patient and worked well in spite of my constant movement. I won’t ever get a massage just because I don’t like people touching me because I know I am going to move uncontrollably at their touch.
The tremor has affected me much more deeply than any of my other symptoms/traits. Because it was so noticeable, I was teased A LOT. Kids are mean in general, so if it wasn’t for my tremor they would have found something else to pick on me about. But because that was the one thing that was so noticeable that was what they focused on. Because of the teasing I learned a lot about myself. I learned that I fought off a lot of their jabs with humor. I would laugh it off in front of them and burn them with a joke trying to not let them see how deeply they cut me. Then when I was alone I would cry and hate myself for being the way I was. I also learned that I had a very clear limit that when pushed to it I responded with violence. There are a few words that push me over the edge, “retard”, “cripple”, and finally one nickname that I loathe “Shakes”. When I was twelve or thirteen there was one kid who found it hilarious to nickname me Shakes Schrader. I had heard from other kids that he was saying it and it hurt me a lot. I tried to avoid him as often as I could until one day during a pick up game of football he said it to my face and everyone around me started laughing hysterically. It was at that point I lost it, I hit that kid so hard he folded like a cheap suit. Then I pummeled him until I was dragged off him and dragged back to my grandparents house. My Grandpa smiled, shook his head and sent me to take a shower where I broke down. But that was a defining moment in my life, no one ever called me Shakes again, at least not in my hearing distance. There have been times where I have thought I’ve seen that word coming to the lips of people I know, but the look in my eyes hardens and they seem to notice and know enough to stifle it before it is said.
As I got older, I realized that some people had some couth and others had none. I had a mother of a girl I was very involved with ask her “So if you two ever have kids will they come out like him?” That stung hard, the “like him?” hurt like I was some sort of grotesque monster that shouldn’t be allowed to reproduce. Even as bad as that was there was a lot of good too. There were people that were interested in me and put all of the bullshit behind them and would just straight up ask me what was “going on” with me. I appreciated that they had the courage enough to come and ask me and genuinely seemed interested in hearing what CP was. There have always been people who have noticed my tremor but try to ignore it because that is what is politically correct only to go and ask someone who knows me “so what’s his deal?”.
Overall, CP has affected my life in some pretty horrible ways but it has also made me the man I am and that to me is a blessing. Although I have had to learn to live with CP and all of the crap that comes with it, I am thankful that my CP isn’t nearly as severe as it could be. I know I could be wheelchair bound and totally dependent on caregivers. I am not trying to throw a pity party, I know how lucky I am. We all face adversity in our lives, CP is mine. It has been a challenge but one that has made me a stronger person.
So there you go, for those of you who don’t know me well enough to ask, “that’s my deal.”. This is why I am the way I am. There are numerous other ways that CP has affected me but I have already rambled on long enough with these. What is written above are a few of the bigger things that are always in the back of my mind. So enough for now because I am really, really fighting the urge to delete this whole thing before I can post it.
But anyway this past week I have been trying to find some introspection on cerebral palsy and how it has affected my life. This past week at work we had our annual United Way fund raiser and one of the speakers spoke about his son who has CP and the services he received from Happiness House which specializes in services for people with disabilities. Their focus is mainly CP and other brain injury. For those of you who don’t know CP is:
While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.
Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oromotor functioning.
**www.cerebralpalsy.org
I was born with cerebral palsy caused from lack of oxygen to my brain during birth. It has affected everything in my life, but I was very lucky that my symptoms are very mild. My muscle coordination is impaired, I have trouble with my hands, my joints, especially my hips are very tight, and I have a pronounced tremor.
The two hardest things I had to deal with growing up were my hands and my tremor. My fingers and knuckles are really tight, but my thumbs are the most affected. They get very stiff and I really have to concentrate to move them. Growing up I had to go to a physical therapist at school to “exercise” my hands. She would roll a large wooden egg into the webbing between my thumb and index finger to stretch them out and ease some of the muscle stiffness. She helped me learn to write using large grip adapters for pens and pencils, but eventually gave up and let me work out my own position system for writing. Where most people write holding the pen between their thumb and index finger, I write with the pen between my middle and ring finger. I hold my fork that way too. When I eat a sandwich, I don’t grasp it between my thumb and fingers, I’ll hold it between my index and middle fingers, using them like tongs or pincers. So growing up I got a lot of strange looks when I had to eat or write.
The tremor was much worse for me because it was so pronounced that everyone noticed. From elementary school through high school my head would bob and weave and create its own irregular orbit around my neck. It is all involuntary and I think that is a reason my neck is so large today. I think that all of the muscles firing in my neck got strengthened to keep my head steady. In addition to my neck I have routine involuntary muscle spasms/twitches where parts of my body just move or lurch. I’ll be lying in bed flat on my back and my shoulders will clench and contract causing my arms and chest to move as well. As I’ve grown older and started working out, I have strengthened my muscles and that helps to reduce my tremor. It is still there and visibly noticeable, but reduced. It becomes much more pronounced if I am concentrating or someone says the four words I absolutely hate to hear, “Try to stay still”. The minute someone says that I become acutely aware of just how much I am moving, so I concentrate on stopping it which just makes it that much worse. I recently went for about six acupuncture appointments and that was a struggle to lie still while she put numerous needles in me, but fortunately she was very patient and worked well in spite of my constant movement. I won’t ever get a massage just because I don’t like people touching me because I know I am going to move uncontrollably at their touch.
The tremor has affected me much more deeply than any of my other symptoms/traits. Because it was so noticeable, I was teased A LOT. Kids are mean in general, so if it wasn’t for my tremor they would have found something else to pick on me about. But because that was the one thing that was so noticeable that was what they focused on. Because of the teasing I learned a lot about myself. I learned that I fought off a lot of their jabs with humor. I would laugh it off in front of them and burn them with a joke trying to not let them see how deeply they cut me. Then when I was alone I would cry and hate myself for being the way I was. I also learned that I had a very clear limit that when pushed to it I responded with violence. There are a few words that push me over the edge, “retard”, “cripple”, and finally one nickname that I loathe “Shakes”. When I was twelve or thirteen there was one kid who found it hilarious to nickname me Shakes Schrader. I had heard from other kids that he was saying it and it hurt me a lot. I tried to avoid him as often as I could until one day during a pick up game of football he said it to my face and everyone around me started laughing hysterically. It was at that point I lost it, I hit that kid so hard he folded like a cheap suit. Then I pummeled him until I was dragged off him and dragged back to my grandparents house. My Grandpa smiled, shook his head and sent me to take a shower where I broke down. But that was a defining moment in my life, no one ever called me Shakes again, at least not in my hearing distance. There have been times where I have thought I’ve seen that word coming to the lips of people I know, but the look in my eyes hardens and they seem to notice and know enough to stifle it before it is said.
As I got older, I realized that some people had some couth and others had none. I had a mother of a girl I was very involved with ask her “So if you two ever have kids will they come out like him?” That stung hard, the “like him?” hurt like I was some sort of grotesque monster that shouldn’t be allowed to reproduce. Even as bad as that was there was a lot of good too. There were people that were interested in me and put all of the bullshit behind them and would just straight up ask me what was “going on” with me. I appreciated that they had the courage enough to come and ask me and genuinely seemed interested in hearing what CP was. There have always been people who have noticed my tremor but try to ignore it because that is what is politically correct only to go and ask someone who knows me “so what’s his deal?”.
Overall, CP has affected my life in some pretty horrible ways but it has also made me the man I am and that to me is a blessing. Although I have had to learn to live with CP and all of the crap that comes with it, I am thankful that my CP isn’t nearly as severe as it could be. I know I could be wheelchair bound and totally dependent on caregivers. I am not trying to throw a pity party, I know how lucky I am. We all face adversity in our lives, CP is mine. It has been a challenge but one that has made me a stronger person.
So there you go, for those of you who don’t know me well enough to ask, “that’s my deal.”. This is why I am the way I am. There are numerous other ways that CP has affected me but I have already rambled on long enough with these. What is written above are a few of the bigger things that are always in the back of my mind. So enough for now because I am really, really fighting the urge to delete this whole thing before I can post it.
We are all better people for knowing you! I hope you know that people remember you for brightening their day... Or making them laugh. Those are my fondest memories with you....matthew mae!
ReplyDeleteI remember you being a quiet kid in elementary school and one of the 'cool kids' in high school that didn't let anything slow you down. I think you are right though that kids are generally mean and will find something to pick on others about. Thanks for the insight in to life with CP.
ReplyDelete