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LIVING WITH CP

Kayla 2008
Kayla


ATTENDING A REGULAR SCHOOL

In 1970, I was born with the umbilical cord wrapped around my neck; thus, oxygen was cut off from my brain for a period of time. (Basically, cerebral palsy is caused by brain damage before, during or shortly after birth.) The doctor wasn't at the hospital when my mother went into labor, so she was given shots to delay the labor until he arrived. We're not sure if that had anything to do with the cord getting around my neck, but I've recently learned that others with CP also has had delayed births, which is an interesting coincidence.

My family didn't really know I had cerebral palsy until I was approximately six months old. At that time, no one knew to what extent my disability would be or if I would have a mental disability as well as physical. Fortunately, my mental abilities weren't affected at all, but I believe many people wrongly assume I'm mentally challenged just because I'm physically disabled. The extent of my CP is somewhere between mild and severe (more on the severe side), and it affects my balance, motor skills and speech. Therefore, I'm unable to walk, use my hands well, and my speech is difficult to understand.

When I was two or three years old, I started going to a day care center for the handicapped. There, I received physical therapy daily, and all the experts thought I would walk one day. I've always wondered if I had tried harder to do my exercises as I was growing up, would I be walking today? I did try hard before I started going to school, but then I began concentrating more on my academic abilities. Besides, doing schoolwork took up most of my time, and I needed some time to just enjoy myself.

My intelligence was evaluated while I was still attending the day care center, so they decided to mainstream me in a regular school. I started in the first grade part-time -- I spent half of the day at school and the other half at the center. I began going full-time in the second grade. My favorite part about that first year was learning how to read. I also enjoyed being with kids without special needs, and fortunately, my classmates were wonderful because they always treated me like an equal and never made fun of me. I only remember two incidents when I was made fun of in school, but those individuals weren't in my class. I learned later they had mental and emotional problems of their own, so that explained their behavior.

After I got internet access and started reading about others with disabilities, I was surprised most of them didn't have many good experiences in school like I did. Don't misunderstand -- I had my share of unpleasant experiences, and at one point, I hated school and wanted to quit. It was difficult having an adult aide with me all day because it felt like, at times, that I had a teacher looking over my shoulder. This is probably why I put so much pressure on myself to make good grades, and I made all A's and B's and only one C throughout elementary and high school.

I could tell many bad things which happened during my school years, but I've always been more of a positive person, so I remember more of the good experiences. My parents always treated me like a normal child as much as possible, so that's why I think I never dwelled on whether I was being treated unfairly because of my disability. As I look back now, I can see some instances where I was discriminated against because I was handicapped. For example, I didn't get to go on many school trips since it was difficult to get me and my wheelchair on and off the bus. I was among the first physically challenged students in my county to attend regular school, so the school facilities weren't handicapped accessible. In high school, two strong boys had to roll me outside, up and down a steep hill, so that I could get to my classes which were on different floors. (I didn't mind at all being helped by my male classmates though!)

I believe my sense of humor has helped me make it through many obstacles caused by CP. I'm able to laugh at how I've had to overcome some of these barriers like typing my homework with my nose on an electric typewriter. (I typed like that until I graduated from high school and got a computer with assistive software which enabled me to use a joystick to type on an on-screen keyboard.) I have received many compliments about my sense of humor, and I think that makes people feel more comfortable to be around me. Many people who aren't around the disabled often seemed not to know how they should act or treat me, but once they see I like to laugh and talk like anyone else, they usually relax and started treating me like a normal person. I love when people start teasing me about something because that's a sign they feel comfortable with me and know I can take a joke.

My sense of humor and good attitude may have been why I was so well liked by my classmates and teachers. Although I always felt accepted by my peers, my physical limitations and speech impairment prevented me from forming close friendships. That was why I was so shocked and honored when my classmates voted me an "Outstanding Senior" and "Most Memorable!" The principal also presented me with a special "Spirit of the Class" award at the end of my senior year, and I was the only one who received this honor. I received more surprises at my high school graduation starting with the principal using me as an example to help the other graduates to remember to be the best they can be. Then, the audience gave me a standing ovation when I walked across the stage (with the help of two junior marshals) to receive my diploma. I'll never forget that night, and I think it inspired me to try to do something meaningful with my life!

AFTER GRADUATION

After I graduated high school, everything changed for me. Although people encouraged me to go to college, I decided it would be too difficult because of the extent of disability. I was content for a while not having to do schoolwork anymore and just being able to do whatever I pleased at home. My classmates were going on to college, getting jobs and getting married, and I spent my days at my grandparents' while my parents worked, where I mostly read and watched TV. People said I had it made, but I felt life was passing me by. This was a difficult time for me, but no one knew because I kept these feelings locked inside of me.

Some of my high school friends stayed in touch with me through letters for the first couple of years after we graduated, and I still hear from a few. Naturally, most of us drifted apart, but they helped me feel not so lonely through that tough transition period. I was pleasantly surprised when one of classmates visited me on my birthday, We've been friends all through school, but we became better friends from that day because we began visiting each other frequently. We were best friends, or so I thought. I guess I leaned on her too much because I never really had a best friend before, so I would call her at least once a week just to chat, but she must have thought I always wanted her to visit because she would offer to come and see me every time we talked. I was also probably afraid she wouldn't stay in touch with me if I didn't keep calling her.

My fears were validated when she told me she and her husband were moving, and she would let me know her new address and phone number. She never contacted me to give them to me. I was very hurt and angry because I couldn't understand why she did that after she claimed to be my best friend. A few years later, her sister thought Meg and I could start e-mailing each other since both of us had gotten internet access since the last time we talked, so I sent my e-mail address to her so that she could write me first if she wanted to. It took her a while, but she did e-mail me, and she acted as if nothing had happened between us although we hadn't been in touch for about three years. All these emotions of confusion and pain were locked inside me during those years, so I wrote her back and told her exactly how I felt. I also apologized for being a pest by calling all the time since that was probably part of the problem. She replied to that e-mail and said she had no idea I felt that way because she thought people didn't have to be in touch all the time to be best friends. I agree with her, but I don't believe that best friends would go for three years without contacting each other. I didn't even received a Christmas card from her, and I couldn't send her one because I didn't know her address! She apologized for hurting me and promised that she would stay in touch. We occassionly e-mail each other.

Although I will probably never completely get over the pain or understand why Meg treated me that way, I think I learned some things through that experience. Now, I try not to hold on so tight to a friendship because I know that if someone really wants to be my friend, they will stay in touch with me on their own free will. I'm cautious about trusting people, but I try not to allow this bad experience to harden my heart towards others who might turn out to be true friends. I'm grateful that I had Meg to lean on during that difficult period of my life because I really needed a "friend".

Different individuals have helped me through difficult times, so maybe certain people are meant to be a part of our lives at certain times. I've had bitter feelings towards Meg during these years, but now I'm trying to let them go because maybe she may have a good reasons for her actions that I don't know about. I also suppose that it's only natural for some friends to drift apart.

GROWING PAINS & STRIVING TO BECOME A WRITER

During the summer after my high graduation, I started writing about my school days just to have something to do. I worked on it at my grandparents' on an electric typewriter with my nose. Every time I had a page typed, my grandfather would grab it to read it. I didn't think much about it at the time, but now I'm proud that he was so interested in it. I can't remember if I finished the first draft of that article before he died that October, so I don't know if he read it all.

1988 started out being the best year of my life since I received many accolades in school and graduated with praise, but it ended as the worst. No one in my immediate family had passed away until that year, but my uncle lost his long battle with cancer a couple of months before my grandfather died of a heart attack. My grandparents' house was/is like my second home since I have stayed there almost all my life during the times my parents worked or went places where I didn't want to or couldn't go. (I still stay with my grandmother.) The loss of my grandfather was tramatic for me, as you can imagine.

I didn't only have to deal with my sadness, but I was with my grandmother almost every day through her grief. She took Grandfather's death very hard, so she was in mourning a long time. She had a lot of visitors during this period who hadn't been around me much, and I noticed how most of them either ignored me or treated me as though I had the intellect of a child. Some would even talk about me like I wasn't in the room and asked if I understood that my grandfather was dead, or they would say how pitiful I was. Although I realized they didn't understand CP, their attitude angered me. I would become frustrated when I tried to explain I had normal intelligence because they couldn't understand me, and that made me appear like a babbling idiot even more.

Let me get back to that article I was writing about my school days. Like I said, I just started writing because I needed something productive to do, so I didn't have any plans of trying to get it published until I saw a "Triumph of the Spirit" contest in a women's magazine. Although I didn't know how to submit a manuscript to magazines, I decided to enter my story in the contest just to see what would happen. I really didn't expect to win, so imagine my shock and excitement when I learned my article was among the winning manuscripts! It was published in the magazine, and I received $500. The catch was I had to sell all my rights to the article which isn't wise to do, but I didn't care because I was so thrilled to be a published writer.

I can't remember why or when I decided to take an English composition course at the community college, but my mother would take me a couple of nights a week after she had worked all day. The main focus of this class was creative writing, and I believe this course improved my writing skills because I had to write several compositions. My confidence in my writing ability also rose because I made an A in that class. I started taking sociology but found it more difficult than English, so I quit.

That wasn't the only reason I stopped taking night classes. I have wonderful parents who have helped me to have as much of a normal life as possible, but I realize that it's not easy taking care of a disabled child. After Mom worked, she was already tired without taking me to school in the evenings and staying with me for two or three hours, so I didn't want to put her through that kind of pressure. I learned about correspondent writing courses, so I used the $500 that I won for my "Triumph of the Spirit" article to enroll in a children's literature correspondence course. After I finished that one, I took another correspondence course in fiction writing. These type of courses were perfect for me because I could do the assignments by myself at home.

MY JOURNEY IN BECOMING A JOURNALIST

Although one of my short stories which I wrote for one of my assignments was published in a small publication, it was evident by the rejections I received that fiction wasn't my forte. I finally sold another short piece concerning my first writing sale to a magazine, and that small filler changed my life! I'm a client of a local agency for the disabled, and my case manager brought a county commissioner to meet me in 1993. I had told my case manager about my short article being published, and she wanted to show it to the commissioner. I was a little embarrassed to show it to this lady, who I didn't even know was a commissioner at the time, because I didn't think the filler would impress her. Surprisingly, she seemed quite impressed with the article and asked if I would like to write for the local newspaper occasionally. I replied that I would even though I wondered what I could write for a newspaper. She said she would talk to the assistant editor of the newspaper about me.

Since I knew sometimes people would say things that they really didn't mean, I doubted if she would contact the assistant editor, but she was true to her word. My first assignment I wrote for the newspaper was a review of a country music concert which I attended as well as a short bio about myself. As a result of that autobiographical piece, the editor offered me a monthly column concerning the myriad aspects of being disabled, which I have been writing for the past six years. Through this column, I have written about the challenges that I faced daily because of my physical disability and about the misconceptions the general public holds about disabled individuals. I believed that my articles have helped to prove to some people in my community I'm not mentally challenged because I've received more respect since I started writing my column.

As much as I enjoyed writing about disability issues, I wanted to branch out and write about other topics. That's why I contacted another local newspaper and asked if they would permit me to write profiles of local people and issues affecting the county, so I'm also a freelancer for that newspaper. I had to come up with a creative way to interview the individuals who I wanted to write about because of my speech impairment, and adaptive equipment made this possible.

Not long after I graduated, vocational rehabilitation purchased for me a specially designed laptop computer that had an on-screen keyboard called "Freeboard." It was also designed for a joystick instead of a mouse since I'm unable to use a mouse because of my jerky hand movements. I typed by moving the arrow with my joystick to the letter on the Freeboard that I wanted to type. Although this method is slower than typing with my nose, it's much better on my back and nose. (Although I don't have that laptop any longer, I have newer software programs which still allow me to type with a joystick and an on-screen keyboard.)

I also have a TTY (a tela-typewriter) to make phone calls. TTYs are mostly used by the hearing impaired, but they also help individuals with speech impairments. I can have a telephone conversation by typing what I want to say to a relay agent who reads it to the person I'm talking to. Most people don't like to get these relay calls from me because it's a slow process, so I mainly use my TTY to call people who I want to interview. I have been hung up on many times. I understand they were probably busy, but why couldn't they talk to me for ten minutes or ask me to call back at a more convenient time?

When I call a possible interviewee, I asked him/her if he/she is interested in having an article written about him/her. Most have said they were interested, so I explained I will mail them a questionnaire to answer at their convenience. That's how I overcome my speech impairment in conducting interviews. There have been several times when my questionnaire hasn't been answered without an explaination as to why, so all I can do is try again.

I kept in touch with that commissioner who helped me to become a journalist, and we slowly became best friends. Our friendship is still amazing to me today because I never imagined a county official would have or take the time for me. A couple of years ago, Rose, and her husband moved to another state. Although I believed she was a true friend, I still had fears that we wouldn't stay in touch after she moved. My doubts probably came from my experiences with Meg. Rose restored my faith in true friendship because we have stayed in contact through all these years. We "chat" all the time via e-mail.

Rose always amazes me by the wonderful things that she does for me! In 1995, I received a large envelope from the White House. I just thought it was something pertaining to disabled Americans which everyone with a disability received, but it was a personal letter and an autographed photo from the First Lady, Hillary Rodham Clinton! Without my knowledge, Rose had sent her two of my newspaper articles, and Mrs. Clinton states in the letter: "As these articles illustrate, your writing has opened a window on the world and has allowed others to appreciate your keen intellgence, courageous optimism and enjoyment of life." It still seems incredible to me to think that the First Lady and Senator of the United States actually read a couple of my articles and complimented my writing! I would have considered Rose to be my best friend even if she didn't do this unbelievable thing for me, but it shows what a terrific lady she is! This is only one of the many gifts she has given me.

When I was younger, I didn't know why I aspired to be a writer, but I believe now I needed a way to express myself to compensate for my speech impairment. Writing (especially my column) has been theraputic for me by allowing me to get in touch with my deep feelings and has given me more self-confidence. Being able to express myself through the written word has also enabled me to form more friendships because I now correspond with quite a few people via e-mail. I think the internet and e-mail are great assets to individuals with disabilities, especially to the ones, like myself, who don't go to many places. I don't know what the future holds, but I'm grateful to everyone who has assisted and encouraged me in my goal to become a writer.

UPDATE

Although I have talked about some of the negative experiences of having a disability, I've had many more positives ones. At this period of my life (August 2001), I'm thankful to have a wonderful family and many great friends who have helped me experienced life to the fullest! For example, my family has taken me to Fan Fair, an annual event in Nashville, TN where country music fans can meet their favorite artists and to Sea World and Epcot in Orlando, Florida.

I see myself as a very happy and confident person who has accepted my limitations and who has found ways to overcome many of them.

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PLEASE VISIT MY OTHER WEB PAGES

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FRIENDS' LINKS

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Jamin' With C.P.

Kim's Site: How I Cope With Cerebral Palsy

Visit Tink's Web!

Levi's Watkins Site

Mikki's "Grandma's House" site

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ASSISTIVE TECHNOLOGY LINKS

The following two web sites are where I purchased some of my assistive technology software including Joystick-to-Mouse and my two latest on-screen keyboard programs, My-T-Soft AT and Onscreen. They have several devices and software programs to help disabled computer users.

Innovation Management Group

RJ Cooper

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Dove of Peace

This Dove of Peace flies freely around the net. Please pass him along to others.

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WORTHY CAUSES

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Tink's Unity page

The American Flag Ribbon divider and United Heart graphics came from Tink's Unity page.

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The Breast Cancer Site

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