My story begins at birth. I was born three months early, on June 3 at less than one pound. I could not breathe on my own or open my eyes. I was put on a ventilator and transferred to a children’s hospital. I had a 50 percent chance of surviving. The doctors quickly discovered I needed heart surgery. I was too unstable to be taken up to the operating room, one floor away. They did the surgery in my room.
After recovering, the doctors diagnosed me with cerebral palsy and I started receiving treatment. I spent the first three months of my life in the hospital.
The type of cerebral palsy I have is called spastic triplegic cerebral palsy. “Tri’ means three and so for me it affects three of my limbs. The limbs most affected for me are my left arm and leg. My left arm is greatly affected. My right leg is only mildly affected. It affects my balance, motor control, fine motor control and has created muscle tightness. To treat this, I have had physical and occupational therapy since I was a newborn.
Another treatment I receive is Botox. Every three months, I go to a neurologist’s office and receive over a dozen shots between my left arm and leg. The Botox helps to loosen my arm and leg, makes it easier for me to use them and lessens the pain I feel due to my tight muscles. I wear braces on both of my legs. The brace I wear on my left leg is knee high, multi-colored plastic and secured with a thick strap of white Velcro. On my right side, I wear a white insert that sits in my shoe and is molded to the shape of my foot. These braces help my legs and feet to be in the correct alignment and help me to maintain my balance as I walk.
As another one of my treatments, I had an orthopedic surgery when I was twenty years old. This surgery was to realign my femur and tibia on my left side that was pulled out of alignment due to my growth and tight muscles. I also had hamstring lengthening on both of my legs. This surgery loosened my hamstring muscles, which made it so much easier to move my legs and walk. The surgery took five hours. To rehabilitate from it, I was in physical therapy for a year and a half. Since that surgery, my balance has improved tremendously and my alignment is now correct.
Cerebral palsy has affected me greatly. It has affected me physically and emotionally. The physical aspects of my disability will always be there. The emotional aspects were much more difficult for me to deal with. At the age of 7, I began to realize I was different. I realized I did not look like the other kids, with my big, clunky braces, my unstable walk, and my left hand that cannot grip things very well. I used to lay in my bed and cry, because I hated being different and felt I could not relate to any kids and they could not relate to me.
As I got into my teenage years, this feeling and struggle became more prominent and much more difficult to handle. During this time in my life, I began struggling with depression and anxiety. I had no friends and felt completely alone. In my late teenage years I did my first musical, discovered I loved it and began finding friends who love me for me. Musical theatre changed my life and gave me true friends.
This body is the only one I know, but being in this body is challenging at times. I struggle going up and down stairs and up and down curbs; I need a handrail or a person’s hand to safely do those things. I trip over my feet and my balance issues make it impossible for me to catch myself. I have to be cautious and really think before I take steps, walk on uneven surfaces or get up on high chairs.
Due to my tight muscles, I do not have full extension of the left arm and the use of that hand is greatly affected. Sometimes my hand hurts because the muscles are tight and force my fingers into uncomfortable positions. I cannot write, type or grip things very well with my left hand. Due to the tight muscles in my left arm, I have developed a bone contracture. I can no longer fully extend my elbow without pain. The only way to fix that is through surgery, but because it is not interning with my independence, I will not be undergoing that surgery at this time.
I also have a learning disability, which makes school a challenge for me. It causes me to learn things at a slower pace, need more repetition and take longer to complete assignments and tests. Due to the learning challenges I face in school, I did not graduate with my peers. After a lot of help from an adult basic education program, a tutor, family and friends, I graduated in December of 2015 with my high school equivalency diploma. In January of this year, I began my next academic journey, which is to get my Associates of Arts degree at Meremac. I hope to go on the University of Missouri — St. Louis to major in Social Work. I hope I can use what I’ve experienced in my life to help others.
Cerebral palsy will forever affect my life and how I go about living it. I have come to realize it is my choice if I let CP define me or if I define myself. I choose to define myself. Sometimes the way my body and brain work frustrate me and I wish to not have the challenges I am faced with every single day of my life. My body does not listen or cooperate with my brain all the time. On the other hand, I am grateful for these challenges because I feel having cerebral palsy has shaped me into the person I am and given me a unique perspective on the world.
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I hope to help others through sharing my stories and raise awareness of the conditions that I have.
beyondthebraces