There is a difference in my mind of being disabled and living with a disability. Being disabled means you keep reminding yourself you are disabled and there is nothing you are going to do about it. You're waiting for people to feel sorry for you and treat you like a king. OK so every person living with a disability has felt disabled, including myself! You make people feel guilty you have the disadvantage and they don't. This doesn't fly well with those who are living with a disability because it is a setback to all of us.

Disabled people usually aren't born that way or have a slight disability that is degenerative. This means the older the person gets, the disability worsens and he or she gets more bitter. Even worse a result of what someone else did to you, like getting hit by a drunk driver. The person who was at the wrong place at the wrong time is a prime example of a disabled person! He or she doesn't think about how it's been years since the accident and they have a new life to live. It's their choice to take it or leave it. Unlike people living with a disability, they have had a taste of what it's like living without a disability. Guess I can't expand on that one....

Truthfully I never wanted to focus on Cerebral Palsy itself because I don't want folks to read this just because I am living with a disability. On the other hand there are some people who don't know what Cerebral Palsy is, I will do my best to try to explain it. CP is unique because it is caused by a lack of oxygen going to certain parts of the brain . People living with CP are the ones who are most likely to be misdiagnosed retarded, because it is brain damage. Without proper therapy the person has no way to communicate with the outside world. There are many types, some more severe then others. People who have survived strokes have an idea what it's like to have CP. Cerebral Palsy is not degenerative, however the body responds in different ways as the person grows. There are a lot of different types and variations of Cerebral Palsy including spastic, ataxic, hypotonic,, tremor and athetosis. Each type is caused by different parts of the brain being damaged.I have had Athetoid Cerebral Palsy since birth.

Athetosis is a common form of CP, which affects every part of my body, from my speech to the way I walk and every motor function in between. I got it during the delivery when the unbilical cord got compressed in the birth canal it caused the oxygen to be cut off from the part of my brain that controls all motor functions in my body. When people use their limbs, a signal goes from their brain to the part of the body they want to operate. However in my brain, the signal is either weak (when I sway when I walk), or it doesn't get there at all( when I can't stop myself from falling). It's like a switchboard in a big building that doesn't always patch the call to the right extensions. My brain knows what my body wants to do and, in theory, my body can function normally. It's just the connection between the two that's a bit weak. There are even times the signal goes to the wrong part of my body . This tends to be very frustrating when I have trouble completing a simple physical task, like buttoning my jeans or pouring soda out of a bottle. However with a great deal of effort, I can obtain up to about three-quarters of my body.

<&nsbp> Hand functions fall under two separate categories, gross and fine motor functions (I learned anatomy from therapy). Gross motor is relatively easy for me, like picking up a box or swinging a bat ( I never could figure out decent examples). So long as I can stop when my hands hurt. Fine motor, on the other hand, is much more difficult. This is where buttoning my pants and picking up those little things, like tacks, come into play. Writting also falls under fine motor. My hands make the other parts tight because to use them, effort is zeroed in one that one task. Everything else just falls apart, my speech, my walking and all other functions. It takes a bit more control, which requires more energy. When my hands start to really hurt, that is when I know I must stop.

People have to remind me all the time that I am beating the odds,. Then I forget about it. Ironically I do take for granted that I can get up out of bed everyday with just a little ache in my legs, a krinck in my back and a twitch in my neck. Since I have lived with it so long, I just think it's natural Walking is a little better, but I do sway back and forth and stumble around. Sometimes I am tired of making the extra effort, which is a sign that I am human and do make more then my share of mistakes. Although most of the time is getting the right motion is difficult. I could be sitting down talking with a friend for awhile and when I go to get up, my legs collapse Every time I go to the movies, no matter who is with me, my legs turn to Jell-O. Whenever my legs aren't active for awhile it takes a few minutes to get them going again. People have seen it happen to me all the time and have gotten used to it. Sometimes they shake when I get excited or nervous. It's a reaction that again is magnified by the athetosis. So it's clear why it happens whenever I go on a date. I get myself really down over that one because it's the one thing I really can't control. I wear plastic inserts in my shoes to keep my feet in the proper position for me to walk. They are created out of plaster mold that was formed around my feet.

Everyday since I have been walking the inserts have helped me keep my balance. Another valuable function held was to prevent bone deformity, which in turn offset the number of surgeries I had. Over the years, they have varied in structure. Well every time my foot grew, I needed new ones. When I was younger, they came all the way up to my knees. Since then they have reduced in size and now people don't realize I just keep them in my shoes. Back when I had thoughts big "clunkers", I needed help getting them on because I couldn't get them myself. Every curse known to man came out of my father's mouth whenever he put them on! Yup it was a routine he hated and I dreaded. My favorite times were when pebbles would get stuck in them. I had to have someone take my shoes and inserts off just to get a stupid piece of rock that was accidently kicked in there. During the summer months when the other kids were wearing sandles, I was stuck with sneakers! My feet often were soaked by the end of a humid August day. The only time I wasn't wearing them was when I went barefoot. Since my foot stopped growing a few years ago, I have gone back to wearing them inside my shoes.

What really bothers me is the it seems I don't have these limitations one minute and fall flat on my face the next. My knees have gotten bashed, cut, scraped and bruised hundreds of times.When I lose my balance I tend to stiffen up to try to stay up however this only contributes to the falling itself, this is a perfect example of the way the athetosis takes control of my body. The only consultation is that most of the time my knees hit the ground first, which isn't to bad. Although I have never had surgery on my knees themselves, I have had stitches on both of them quite a few times. This also adds to the number of visible reminders of how hard it is for me to walk for long periods of time. When I was younger I used to visit my neighbor who lives in back of me. He was the first one outside my family and therapists who told me if I truly didn't want people's sympathies, I must get up when I fall down! At times I felt he didn't really understand that I do have a disability and am trying to cope. Looking back now, I can understand why he was so hard on me to get myself up. Having people help me has never been a way to get me through life and I prefer it that way! Every time he yelled at me, in a weird way he was reminding me I hate being helped! It took me twenty-one years to figure it out, but I do owe him a lot !People as they get older complain about their joints aching, I am only twenty-one and am already faced with this dilemma!

During school hours I used a walker to help keep my balance. It does look like I am about to fall any second, which happened some of the time. Since the halls were crowed, without the walker I would have been accidently knocked down. The walkers I use are very specialized because the frame is behind me, not in front. Using the other kind would be a disaster because I would tend to lean on it too much. There are times I prefer the walker over the scooter because it's easier to navigate in crowds with. I can even get it in and out of the car myself. The walker is most valuable when I am walking long distances because it keeps my body from swaying back and forth, which reduced the amount of energy I used.

Surgeries are probably the scariest thing I have ever had to go through in my life. One of the things that gets me uptight is going into the city. Of course all of the good doctors happened to be in the city. This may be true, but the actual rooms aren't cleaner and the food isn't more edible! Having the operation is one thing, but having it there makes it a lot more harder on me. The worst part is getting up at the crack of dawn so we can go into the city. Although it is better then going into the hospital the night before! I did that a few times and couldn't sleep the night before, not that I did any better at home. There's that anticipation of knowing I walked into the hospital and then being wheeled out upon departure. My legs are more involved then my hands, they get more "abuse", so that's where the surgeries have been. I can bear the pain, but it's those infamous spasms my body reacts to pain by tightening up, which defeats the purpose of having any surgery in the first place. My first one happened when I was only two years old, which had me in a half body cast for six weeks. Try going to the bathroom with plaster coming up past your hips! Don't ask me how I did I because I honestly can't remember. My dad took a "famous" family picture with me holding a calendar with X's counting down the days until I got my cast off. Once it came off, I had months of therapy and eventually learned how to walk. It would be the first of five surgeries in a twenty year span which for people with my kind of disability is a pretty low number.

The second was called "preventive surgery" my knees were turning in causing my hips to get displaced. I had undergone what the doctor called perineal transfers on both feet. Which basically meant he would take some bone out of one side of both feet and put it in the other side. Unlike my first surgery, I do remember it very clearly because I was eight years old and would be starting a new school in a little over a month. It wasn't how I wanted to go into a new school year in a brand new school , but I had no choice. Since the surgery was in August, the cast was itchy and hot, another uncomfortable feeling magnified by the athetosis. I used anything and everything to scratch underneath the cast, fortunately nothing ever got stuck down there! About six years after that I had what I called, "the mother of all operations". This was a major eight hour operation on both hips. It was the one the other kids with my kind of disability had a few times as they where growing up. Since I kept my legs pretty straight as I grew , I had mine when I was fourteen. It consisted of actually cutting both hip bones and rotating them outwards. Then the doctors put steel plates in to hold the bone in place. For the bones to heal properly, the plates were in my hips for a year. The ones previous were muscle related, this was actually bone, something harder to recuperate from. Then it took months for me to learn how to walk the right way so I didn't have to go through that kind of surgery again. It was a setback I didn't need at that point in my life, but it had to be done.

I always wrote as if it was the most devastating part in my life, then my mother reminds me of how I am a quick healer,. Guess having an aunt who is a nurse doesn't hurt either. She has taken more stitches out of my body then I can remember. Although she didn't take the ones out from this last surgery, it was my grandpa! My family had gone up to Lake George only two weeks after I got out of the hospital, a great way to recover. My grandparents have been going up with us the past couple of years, this time wasn't any different. Since I couldn't climb stairs yet, my mother set me up on one of the downstairs couches. My grandpa took his usual post on the other couch, that way he could keep an eye on me. On the third morning we were there, I woke up and saw him looking at the back of my knees. Grandpa had announced loud and clear it was time to do what he called "minor surgery". Just then my grandma came down from her bedroom and grandpa deputized her as a nurse. So she got him tweezers, rubbing alcohol and some new gauze. Grandpa washed his hands, put a towel downon the couch and asked me to lie on my stomach, which I hate doing! My grandma went to get some soap and water to wash my legs off . Before I knew it, the tape was being peeled of my skin. Quickly I heard a rip and let out a big yelp! He was already to see those wires behind those bandages. However when grandpa took the band-aids off, he discovered there were no stitches! All that was left was dried blood and a little ooze! So my grandmother washed my legs and the ordeal was over. Remember I have two brothers who love to rough house, I had no other choice but to recoup quickly!

Just going for X-rays was a pain. I had to make an attempt to stay still while they're taking pictures. Trouble is the more nervous I got, t he more my body shook! It always took the technician a few more times extra to get the perfect picture of my hips. My mom was usually right there trying to calm me down enough just to get the perfect picture of my legs.

In between these I would go to therapy a few times a week to keep my body in working order. Therapy helped my muscles I would stretch my arms and legs to maximize their function. There was physical therapy, which is what I have needed the most of, twice a week for awhile! Every time I grew, my body tightened up and so I would go there to get "tuned-up". I have anatomy lessons on my own body every time I go! They don't have the regular gym equipment you would expect. People help me twist my back by sitting on a foam roll and going back and forth. I had to go there twice a week for forty-five minutes of what Tommy called "physical terrorism". Now it's true I could have avoided all -of this if I did stretches at home, but I guess it never sunk in.

Talking is the other big one I have very hard time with, I think my speech is harder to control then anything else. Repeating isn't the problem, I learned to expect it from people who don't know my speech. It's by far the thing I wish wasn't affected. I also find myself not caring how I speaki, which can get people who know me really angry. I only know a handful of people who have the speech component added in there. People who really know me ask me to repeat myself, which isn't a problem for me. I was taught to be able say the same thing many different ways. Although most people who don't know me don't bother asking. That's another problem that I can get really frustrated with. Walking. Well I get there one way or another, typing I can deal with, but it's the speech that gets me the most frustrated. Also it's the first sign to people on the phone, there's something wrong with me.

One time my bike broke down while I was coming home from my haircut. I got a ride to the police station to get some help. When I got there I had to talk over a phone to get someone to help! The dispatcher thought I was a prank caller! Now I know most of the police in my town really well, but the dispatcher and I never met so naturally he dispatched a car to check it out. Meanwhile another officer I had known for along time, I went to school with his son, heard the call over the radio and knew it was me. He went out to the call box where I was trying to explain what the problem was. As soon as I saw him, I immediately told him the problem. He explained to the officer what the deal was and within minutes I was escorted back down to where my bike was. Just then one of my friend's mother had pulled up and said she saw my bike. She was driving around looking for me. Well the story ends with the policemen loading my bike into the back of her van. She had dropped my bike off at my house and we went to call the repair shop. Speech is the first thing I lose when my body tightens up. It's also takes the most effort because it not only involves my mouth, but my lung capacity is also limited, so it takes longer for me to get the words out.

I tend to emphasize on the speech, however the mouth has many other functions. My tongue sometimes gets in the way when I eat and I might bite the tip of it. Sometimes I say I am full when I could eat more just because it is such an effort to actually get the food down my throat. There is always a very high risk of choking when I eat because the food sometime slips down my throat before I can chew it. . Then you have swallowing which requires proper used of the throat muscles, this is especially hard with medicine. I gag even sometimes with a pill which is just as frustrating to the person giving my the medicine as it is to me. Brushing my teeth is nearly impossible because I always wind up biting down on the toothbrush. Also my body doesn't function in tandem properly, so while I'm trying to get the toothbrush to my mouth, every other bodily function goes out the windows. The whole thing is such an ordeal, I prefer to use mouthwash instead. It's hard to control the toothbrush with my hand and keep my mouth still enough I also can't clear my throat really well which is a problem when I get something as simple as a head cold.

Luckily I have been healthy because when I get sick my entire body goes into what I call "sick mode". My breathing is a big one I have worried about because the mucus gets stuck in my throat . It takes a lot of effort to really cough it up, it sometimes takes hours. Balance is even harder, if not impossible to maintain. My head is so clogged it really does throw my body of course. It also does a job on my body because it adds fatigue. The energy it takes me to do daily tasks is drained. In other words, take everything that's hard for me to do and multiply it by ten!

I have just touched upon simple physical tasks that most people would take for granted. Although I have just scratched the surface. There are literally hundreds of other tasks many people can do, that I find difficult. Living with Cerebral Palsy has taught me many lessons life. Most of the when people learn I am disabled, they talk to me in a sympathetic tone. It takes them awhile I'm simply living with a disability. Once I get that message across, everything is fine. There will always be things my body just do. However somehow I have led a remarkable life.