How I cope With C.P. Written in 1994 REWRITTEN IN '26

   When things seem different, it’s hard for people to accept what they don’t normally see in everyday life, especially when they don’t know how to react. Take, for instance, my disability, which is Cerebral Palsy, better known as “CP”, which was caused by a lack of oxygen to the brain. As I was coming into this ridiculous, wonderful world, I wanted to be comfortable, so I thought my umbilical cord was a pillow. Of course, it cut off my oxygen, so I needed to spend time in the hospital, but that was not when I was diagnosed. Only later did Mom notice I couldn't roll or sit up on my own. It was only when the doctor explained that I had cerebral palsy since birth, and he held me up so that she could see how my legs crossed; that’s how we knew it was CP. Before my mom took me to see the doctor, both of my parents were scared that there was something awful, but once I saw the doctor, I would be fine. That’s when Mom felt so relieved that she went over to her parents to show what the doctor showed her and explain what had happened. So, it may not be a typical diagnosis, but I was going to be fine; that’s what matters to everyone. I know it is hard to understand what “normal” is, but my question is: does anybody? 

I want to talk about how important my family has been to me and the significant part it has played in my life. Every one of them would stop to rescue my ass.  Tanice, my sister, would sometimes take me to the plaza to look around. She would notice people staring; her reaction was to take a picture so it would last longer. We grew up in a time when people did not think about crime the way we do today, so we would go out and be gone until dusk. We had the privilege of inheriting property from our great-grandmother, who worked in real estate.  Let me tell you, it was so nice to grow up where we could be let outside riding bicycles and horses. Mom would know where we were most of the time because of the neighbors that were spread out throughout the country blocks who would call our mom to say that they saw one of us going some way, either by the long orange flag sticking out while waving as I went down the road, or in the field behind our property. 

     I got to know Sharon through Tanice, who went to school and happened to be a neighbor two houses behind us. Sharon had two sisters who hung around with Tanice; they all did things together. They owned horses; I always wanted to ride with my sister, Tanice, but her horse was a little too spirited. In fact, I had a walker with a built-in seat, so I could sit down if I wanted to. While we were outside playing, I would say things like, I wonder if your horse would pull my wheelchair? Well, she came up with an idea. Tanice brought this little full-grown pony in front of the driveway and started hooking up the walker to the pony with me sitting in the seat. Before we knew it, the pony got spooked and took off back to her fenced area. Luckily, God must have been on my side that day; I had fallen out behind the house under our bedroom window. Of course, I started crying, so Mom heard me, and Tanice tried to calm me down. She wanted to make sure I was alright, so she didn’t want Mom to hear what had happened. The next thing we heard was Mom asking what had happened and saying she could hear what was said. I can only imagine what she was thinking as she was carrying me into the house. Meanwhile, Tanice was putting the pony up. 

     Ever since I was born, I have felt nothing but love and acceptance from all my family. I am a believer that God has his hand in who can manage a situation to have a child born with a disability such as Cerebral Palsy. Once they found out I would be all right, it felt like everything was as it should be. Of course, they knew they would need to take care of me, but it wasn't a big ordeal. As time went by, the kids got older, and when my sister Tanice and I got together with our cousin Danny and Jolie, we would all go out and play together. Often, we would go into the back of our grandparents' store, which had two acres of land with lots of old cars, buildings, and other storage places that could be a playground for anyone who loves junkyards. For example, when we were looking for something to do. We saw a boat; there were a lot of them since our grandpa loved to go fishing. Once we agreed to get up and into the boat, they all helped me in. When it was time to get off, they weren't sure they could get me down without dropping me. So, someone went to get someone to get me down. Joe came to get me down so I would not fall and get hurt. Another time, Joile and I took my electric wheelchair down the street from our grandparents' store, and she sat on my lap controlling the wheelchair. We must have hit a pothole, because that is when we fell off and hit the road. When we came back into the store, this lady, who often comes in, saw Joile and me banging up. She looked at us like we must have been in a car crash. The next thing we knew, she was calling our grandma, even though we came in laughing. 

     A couple of years later, we were expecting my uncle Dan and Aunt Sharon with our two cousins, and I was very excited to see them. When they finally arrived, it was already late that evening.  As everyone settled in, the kids got into bed and were about to go to sleep. Someone had called for Mom because I was making strange breathing noises. Mom came into the room and saw that I was having a seizure; she started talking to me in a soft voice to help me get back to myself. All the while ensuring everything would be fine. Mom explained that when I get too excited, it can cause me to have small seizures; it was nothing to worry about. 

     Over the next few days, we all caught up and enjoyed spending time together. One night, our parents took us to a slide park. I figured that I would watch, but as soon as we got there, my uncle Dan asked me if I wanted to go down the slide. I know I probably looked completely confused; I wasn’t sure how we'd get to the top of the slide, since it was tall and had lots of steps. Of course, when he asked me the second time, I said “yes”; by gosh, he picked me up and carried me up at least twice, if not more. We all had a wonderful time. 

         For as long as I can remember, children have been among the most amusing experiences I have ever had. Up until I was in fifth grade, I was in schools that had disabled students only, and I did not have to deal too much with children who were not disabled. Only when my mother took me shopping did I notice the other children and how they made silly little remarks or faces, and I would make goofy faces back at them. Then I was moved into a school where there was one class for people with disabilities, and all the rest of the classes were filled with “normal” children. Once, I was with children who could run, jump, and play all the games that children played at that age. I began to want to be like the children that I had seen. One day at recess, I decided to get out of my wheelchair and push it behind me so I could use it as a walker. The children started to stare, but I didn’t care because I wanted to be like them and have fun as they did. It didn’t go over that well. Some laughed, and others made funny faces and tried to imitate my every move, but it didn’t bother me. I just went on my way and laughed until one of the aides came and put me back in my wheelchair. But as soon as they left, I got back up and tried again. 

A few months later, I had one of my annual doctor’s appointments, and that is when they gave me my first real walker. I thought I was hot until that day, when I was walking from class and this boy I had a crush on offered to walk me wherever I was going. I got excited, and I started to shake. Then my nerves got worse, which made it hard to speak, so by the time we got back to class, I couldn't even breathe, let alone talk to him. He almost had to give me CPR. 

When I got to high school, the children were just bizarre. At that age, teenagers don’t care about anybody but themselves. Sometimes I felt as though I had a disease, especially with guys. The girls were not that bad; it was more the guys who gave me trouble. For example, it’s hard to get dates when you have this person who shakes every time a cute guy comes along and says “hi,” and it takes all you have not to be nervous and move around uncontrollably. But when all the focus is on not moving and trying to stay in your wheelchair, then when you try to talk, you lose it all, and the guy you were impressed by walks away.

Another perfect example is when my girlfriend knew I liked this guy who helped in homeroom, a classroom for disabled students, when they have problems with other classes or anything else that might come up.  One time, we were watching a movie, and this guy was sitting in front of my girlfriend and me. Lisa, my girlfriend, teased me by telling him I liked him. Well, Lisa wasn’t teasing; she told him right then and there. Let’s say he was a little shocked; he didn’t even look at me for two weeks. I guess he never had a girl with a disability like him before. It upset me that I didn’t talk to her for a while. I was in this class for study hall. I did not want him to ignore me, so I asked another friend to tell him it was a joke and that I didn’t like him that way. 

Some teachers weren't the best at understanding either. The one that came to mind was an English teacher; the second I got into his class, he asked me to write. Of course, I replied no; the next thing I knew, I was out there. That was okay with me because the replacement teacher was great; I even got a “B” in the class. In fact, I had asked him, when I was out of his class, if he would help me with this term paper for the paper that you’re reading now. When things seem off-putting in the moment, it’s a blessing in disguise. 

I got so many other reactions from different kinds of people. For instance, when I’m at the Valley Plaza, I get some of the funniest glances. I remember this girl beside me with a strange look on her face; it was as if she had seen an alien from outer space, all while still walking to wherever she was going. People, young and old, would look and comment on how I would do things, as if I took too long to get my money out to pay for something. Sometimes, when people get impatient, I have even more time to withdraw my money. That’s what gets their pants or dress in an uproar. Also, there have been times when people have approached me for no apparent reason. My favorite one was when I was buying a Christmas present for an ex-boyfriend, and the gentleman offered to pay for the gift just because he wanted to. 

I may have been coping with my disability, but it wasn’t until I went to Bakersfield College that I had accepted my disability. B.C. was something new and different than what I was accustomed to in high school or elementary school. At first, I was a little hesitant to go on, but I knew that if I didn’t, I would be sitting around the house doing absolutely nothing but watching soaps all day. Not that I don’t watch them anyway, but at least that’s not all that I do. I have learned so much, not just from classes I have taken, but from people who were in the boat with me. I was amazed at how many people went to B.C. who had disabilities of some kind or another. I started meeting new people with the same issues I had, and it felt good to know I wasn’t alone. I also got to know some of the people who worked at the college, and that is when I felt more comfortable with my disability. Joyce Kirst, an instructor for the High Tech Center, gave me my first job. After a few semesters there, she entered me in a contest with a brand-new IBM home computer as the prize. When I won, I had to make a speech in front of twenty or more people. My first thought was, Joyce, you had to be kidding. I had never made that kind of speech in my life. I practiced what I was going to say for a week. Finally, when I did, I couldn't stop; people probably thought I would never shut up. At least I got over my shyness, even though people probably would have liked to see me a little shyer. 

I began to open up to a whole new area in my life. On weekends, I started staying at a girlfriend’s house, and some of my other friends took us to my first bar, and, to say the least, I was astonished by how people acted. When we first went in, they were saying, “Why would they come? They come to this bar or something similar. After a few hours, and once everybody had had a few drinks, it started to get exciting. While we were sitting at our table, people would dance up to us and ask if we wanted to dance with them. At first, I was thinking how it would be so funny to see someone in a wheelchair who was a little bit drunk, trying to dance. But one of my friends said to me, “Kim, we can dance just like anyone else. If you don’t like me, that’s their problem, not ours. We have just as much right to have fun as anybody else in this bar does. From that night on, I didn’t feel as different from the people who were in the bar. 

 I had my first steady boyfriend in my second year at Bakersfield College. He was a character, a man who showed people with disabilities that they do not have to sit at home staring at a wall. Every weekend, you would see him either at a party or at a local dance club. If he wasn’t at a party or a bar, he was out on Chester Avenue cruising with all the teenagers, blasting his stereo. You could see him coming a mile away. People would stop and stare at what was coming down the street. He wasn’t afraid of anything; he got a kick out of people coming up to him and asking about the stereo that he had put in his wheelchair. One time, he told me that a police officer stopped him for having his stereo too loud while he was going down the street. A couple of times, I went with him as his girlfriend. Well, let’s say I didn’t like being noticed; I was more of a background type, and I watched. 

     I have learned a lot from other people’s reactions to me; some were good, and others were bad. For instance, if I can't drive, I take either Get-A-Lift or the city bus. I never had an issue with it until this one Saturday, when a friend and her husband wanted me to come to see their apartment. I got ready that morning and got on the city bus. I wasn’t sure where they lived because I wasn’t familiar with Bakersfield's south side, so when I got downtown, I wasn’t sure which bus to take. Once I figured out the route, I headed there. When I arrived at their apartment, I was surprised to find they weren't even home. By then, I was not too happy; I was upset and frustrated that I'd gone all the way over for nothing. I wasn’t sure when the bus would come back, so I went back to where I had gotten off. I was angry and hot, of course; with those combinations, my body moved out of control, even more so when I was nervous. When I saw the bus coming, I tried to get ready to board so it would be easier to roll my chair onto the lift.  When the bus stopped, the Driver asked me if I wanted to get on. What was going through my mind was, dah, why would I be sitting here? So, of course, I was there to catch the bus. 

     I know I have my own seat, and serenely, I wasn’t out there sunbathing.  When he stopped speaking, I wanted to ask him if he was going to the plaza. But he had trouble understanding me. So, another rider told him he thought I had asked if he was going to the plaza; he looked at me, and I said, “Yes.” While I was trying to get on the bus, the handle on my control box came off my wheelchair. Of course, I had trouble putting the damn thing back on. When I finally got situated, I could hear people talking about how I shouldn't be by myself. This woman sitting across from me kept asking whether I knew where I was going and where I lived. While the driver was strapping in, he was mumbling under his breath so that I could escape from a mental hospital. I just rolled my eyes and shook my head. For some reason, he felt the need to call dispatch to ask what he should do. Of course, they had to come out to see what was happening. Everyone on the bus had to wait until they came out to talk to the driver. Once they were done, the guy who came out came in and asked me if I knew where I was going. I said yes. He turned to the driver and said, "You can go."  I had plans to meet my boyfriend at the plaza afterward. By the time I saw John, I was so upset that I looked like a lobster and felt like a crab. As we talked, he helped calm me down.