Living with Cerebral Palsy
- Author Connie Wilson
- Published May 25, 2023
- Word count 2,214
Jennifer’s favorite color is teal. She finally married the love of her life (her high school crush) July of 2022. The only thing she loves more than her husband are her dogs; Chloe, the ten-year-old Shih tzu and Cora, the one-year-old Yorkie. Her passion has been taking care of people and she is a certified nurse’s aid that does private home healthcare. Like most of us, she has two jobs to help make ends meet. Her clients absolutely love her as she goes above and beyond her duties for them.
Jennifer loves her friends and family fiercely. She will take more disrespect towards herself than for other people. Though she’s starting to stand up for herself and set healthy boundaries. “You taught me how to use my words,” she said when I asked her why she is finally putting up boundaries. Sometimes, that backfires on me. The baby bird has left the nest and became a fierce falcon. If you couldn’t tell by now, not only is she my interview subject, she’s my best friend.
Jennifer is definitely a shopper, but a frugal one. I swear she makes the store pay her for buying their products. I found out through the interview that she loves tuna fish. I have specific memories of her telling me she doesn’t like tuna. I could go on and on about how wonderful she is, but there’s one little detail you might want to know so you get a better picture of who she is.
Jennifer was born with Cerebral Palsy. She drives. She works. She mows the lawn. The only thing different between her and the rest of us, is she drags her feet when she walks. “It might take me a little longer to do things than normal people, but I’ll get it done,” she said when explaining her tenacity. “I am not disabled. I am differently abled.”
Cerebral Palsy (CP) is a group of muscle disorders that affect a person’s ability to maintain movement and posture. It is the leading cause of child mobility issues. It is mainly caused due to abnormal brain development either in the womb or up to twenty-eight days after birth (CDC, 2018).
Jennifer’s was caused due to issues at the time of birth. “My mother went into labor four months early. She was in labor for seventy-six hours. The doctors told her to calm down when she kept repeatedly telling her there was something wrong with me, that I needed to be taken by C-section. The cord was wrapped around my neck six times. I was without oxygen for three to six minutes.”
I could spend this entire article using The Center For Disease Control’s technical terms to define CP or I could just let Jennifer explain it. “There are three forms of Cerebral Palsy; severe, moderate, or mild. People with severe CP are the ones where all of their limbs are affected. Usually, they are confined to a wheelchair. Moderate CP symptoms include not being able to control their hands and arms. It makes it difficult to stand or walk. Their muscle tone can go from too tight to too loose in a given day. I am one of the lucky ones, I have a mild case. To my knowledge, I have the mildest case of CP in the States. With having a mild case, I have problems with my balance and coordination. Sometimes I drop things because my hands don’t want to work right.
I asked her where she gets her attitude and her can-do spirit from. Her answer was, “My parents. The doctors told my mother that nothing she tried would get me to walk. They went as far as telling her to not bother trying. Her quote was, ‘I will work with her. I will do my own physical therapy with her. I promise you that I will known Cerebral Palsy better than Cerebral Palsy knows itself, by the time this is over.” Her mother has been gone for twelve years now, so there were a couple of tears shed at the memory before she continued. “ I was able to walk on my own, without the aid of handheld crutches by the time I was eleven. My dad was a Marine, so he would stand in front of me while I was Army crawling and say, ‘Crawl, crawl, crawl! Keep going!’ They would drop things I wanted a few feet away from me to make sure I’d push myself to get it. They never enabled me. Even when I was begging them to let me keep doing what I was doing, because walking was too hard and it hurt, my mom would encourage me to fight past the pain and try again. I was determined to prove the doctors wrong.” There’s that heart and courage that I admire her for.
I am still in awe of her perseverance and her faith in humanity. I was waiting for her in the car at Planet Fitness once, because she was just running into tan. A little time went by and I got worried. Just before I got out of the car to go check on her, the doors came flying open and a tan streak of brunette hair, dressed in Miss Me jeans, hurdled towards the truck. With tears streaking down her face and anger shaking her voice, she proceeds to tell me that a random Karen in the locker room was appalled that Jennifer was allowed in the gym, because she was afraid that she was going to catch whatever Jennifer had.
My seat belt zinged off and I was ready to let that lady know what I thought of her audacity. Jennifer holds up her hand to stop me and says, “Let me finish. I let the lady know that I was born with what I have and she couldn’t catch it if I spit on her. Then, I went to the front desk and complained. The woman was very upset, but the staff corrected her and backed me up. They told her that if she was uncomfortable, she was more than welcome to switch home gyms, but I had every right to be there.”
I was very proud of how she handled things, but I was still fighting mad. I tried to say I was going to go to the bathroom before we left, but with tears still in her eyes, she said, “Going in there is just going to make things worse and give her the right to play the victim. It’s not going to change her mind, or make her see how she acted wrong. The staff validated me and that’s all that matters. You can’t fix ignorance and stupidity. Not even with duct tape.”
We don’t discuss her limitations often, because she works around them. I want people to understand her life more, so I asked her to discuss them. “Because of the brain damage caused at birth, my brain doesn’t tell my left leg to pick itself up. Can I do it? Yes, however, I have to constantly tell myself ‘Heel, toe, heel, toe.’ It gets very exhausting after a couple of minutes, so I don’t do it often. I have muscle spasms like everyone else who has what I have. However, with having a mild case, the doctors have never seen muscle spasms this bad. You can visibly see my muscles contract and release. They have gone on for up to nine hours, even after being given enough medication that would knock out men four times my size.”
Continuing with the hard questions, we talked about what makes her condition worse. “As I get older, the Michigan winters play havoc on my muscles. I don’t get out much in the winter because I simply can’t. It’s almost like my muscles freeze up. It takes more energy to move my body. If I don’t stretch every morning before I start getting ready for the day, I tighten up by mid-day. I have to set my alarm for an hour and a half before I go to work so I have time to devote to loosening my muscles. I’ve learned that I can’t just jump up and run out the door.”
I pushed Jennifer to think about things that nobody wants to talk about. I asked her what was going to happen when she got older. “I am having a ramp built on my deck because stairs are already getting harder to climb. I try not to think about it, but I have a motorized scooter sitting at my sister’s house because eventually, I will be in a wheelchair. That’s why I go to the gym and do my stretches. I’m trying to stay as limber as possible to prolong the inevitable.” She lovingly swore at me when I addressed the elephant in the room and asked her about her life expectancy. “Do you want the doctor’s answer or my answer? The doctors say about fifty-eight, maybe, sixty. I’m going to blow them all out of the water and live until at least seventy-five. You and I will be roommates in the nursing home making the nurses earn their paychecks.”
I’ve known Jennifer since I was ten. When I asked her why she walked like that, she explained her disability and educated me about Cerebral Palsy. Being that I’ve grown up with her, I don’t see her as any different then the rest of my friends. The ignorance people show her is unmatched. She wants people to know a few things. “First off, you cannot catch it. In no way am I contagious. Staring at me is never the answer. It’s rude, and it makes me uncomfortable. I have just as much right to be at Walmart as you do. If you have questions, please come up and ask me. People don’t because they don’t want to pry. But, it’s okay to gawk at me? I would much rather answer questions and educate people than deal with having all eyes on me. If you want to know more about my disease, then Google it. I understand that ignorance is bliss, but keep that to yourself. Don’t take it out on me. If one more person asks me if I’m drunk, I swear I’m going to scream. For the love of God, stop thinking I have the mind of a child just because I walk differently. I am not handicapped, I am handicapable.”
God is using me as a vessel to tell Jennifer’s story. He doesn’t call the qualified, he qualifies the called (1 Corinthians 2:1-5). I may be an expert in other areas due to the experiences but before this article, I was only an expert on Jennifer, not Cerebral Palsy. He used Jennifer to qualify me to write this article.
God directed me to do this article. I know this to be true because it was the first idea I had when given the assignment. I was considering doing a travel article due to time constraints. I didn’t think I would have enough time to conduct a thorough interview with Jennifer, given her work schedule. I couldn’t stop thinking about it. I would wake up with the idea on my mind. During moments of quiet, it would pop into my head and I would think of questions and how to structure the article. This usually happens when I’m hooked on an idea for a book. I knew then, that God wanted me to tell Jennifer’s story.
I was happy to share it with the world. My one wish is to educate people about what a person with CP goes through. I didn’t want to fill an article with medical jargon explaining what the disease is. If people want to learn more about the technical side of things, they can Google it. I wanted society to see a face to the disease to see that those with CP are people just like us. They are just diffferently-abled like Jennifer said. I prayed every step of the way for God to help me get her story out there in a way that would help end the stigma.
I am proud to call that woman my best friend. We live together, so we are around each other a lot. The conversations never stop. We’ve been known to start a movie and then pause it because we had a “quick question”. That “quick question” turns into a three-hour gabfest that starts out about one thing and ends with something completely off the original topic.
She has more love and compassion in her heart than I have ever seen. Jennifer has taught me about life, strength, courage, and how to continue to work towards being a better me. She took me in when I needed her the most and loved me when I didn’t love myself. We are each other’s backbone when we are too weak to stand on our own. I thank God for putting us together.
My name is Connie Wilson. I am a 45 year old woman that lives in Flint, Michigan. I am currently going to Colorado Christian University for my Bachelor's in Creative Writing. Other than writing, I am an avid reader. I like to workout (I have lost 150 pounds with 75 left to go), I love shopping and spending time with my friends.Article source: https://articlebiz.com
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