Growing up, I assumed my life wouldn’t look that different from my peers. I had high expectations for myself. I knew I wanted to go to college to get my bachelor’s degree and therefore increase my chances of finding employment.
As I grew up, I began to realize that many people didn’t have the same expectations for me. My family and friends encouraged me to follow my dreams.
I was determined not to let CP stop me from achieving my goals. I quickly learned that this was unrealistic. There’s nothing in my life that my disability doesn’t affect. As much as I wanted to become a surgeon, it wasn’t possible due to my lack of fine motor skills.
The past few months have been hard for me. I’ve been experiencing increased spasticity, particularly in my lower extremities. Spasticity is uncomfortable, and frustrating.
Spasticity can cause difficulty with completing activities of daily living. For me, spasticity makes dressing, toileting, and showering difficult. The amount of spasticity I am experiencing can change throughout the day as well. Factors such as the weather, my mood, and fatigue all affect my spasticity.
While my diagnosis hasn’t changed, its impact on my quality of life has. These days I can’t walk long distances and experience more involuntary movements, particularly in my legs. Besides being annoying, the involuntary movements make activities of daily living such as showering and toileting more challenging.
As a child, I had no idea just how difficult it is to navigate life as someone living with a physical disability. The last time I had hope for my future was my senior year of high school, five years ago. Unfortunately, the physical symptoms are just one part of my life.
At 24, I am currently unemployed and looking for work. Most people my age have already worked for several years. Unfortunately, I have only had one paid work experience, writing for a magazine.
The U.S. Bureau of Labor Statistics found that 21.3 percent of disabled people were employed last year, up from 19.1 percent in 2021. However, the unemployment rate for disabled people is still triple that of non-disabled people.
This year has also been filled with bureaucratic hurdles. I am due to receive a new walker soon. My PT has already written the letter of medical necessity and submitted it to my insurance company. I then have to wait for the health insurance company to approve the request.
While I am grateful that my PT is willing to help me get what I need, it is frustrating to know that my insurance likely won’t cover it immediately. Unfortunately the appeal process is also lengthy. However, because my equipment costs thousands of dollars, it is untenable for me to pay for it out of pocket.
It is baffling to me that I have to go through a lengthy process to continue being able to walk. Sometimes, I wish the health insurance company could spend a day in my shoes.
If I have to fight for my ability to walk, what about my other hopes and dreams? What about pursuing a romantic relationship? Will people find someone who has Cerebral Palsy attractive? The thought of being intimate with somebody is scary.
More than anything, however I wonder if my partner would see me as a burden. What if I needed to go to the hospital or have surgery? Would my partner be okay with it, or would they want to leave me?
Unfortunately many disabled Americans are still unable to marry. I am one of them. many disabled people who rely on government programs like Medicaid and Supplemental Security Income (SSI) are still unable to marry without their benefits being reduced or eliminated.
Cerebral Palsy should not stop me from living my life to the fullest and participating in society. I want to be able to pay taxes, vote, travel, work, and live life like everyone else. At times though, it feels like this is too much to ask for. I worry that I will never be able to live my life to the fullest.
Sources:
Ceron, Ella. “Remote Work Helps Push Disabled Employment to a Record High of 21%. but the Gain Is Imperiled by Return to the Office Mandates.” Fortune, Fortune Media Group Holdings, 25 Feb. 2023, https://fortune.com/2023/02/24/remote-work-disabled-employment-record-high-remote-work-office-mandates/.
LaGorce, Tammy. “Seeking Marriage Equality for People with Disabilities.” The New York Times, The New York Times, 25 Aug. 2022, https://www.nytimes.com/2022/08/25/style/marriage-equality-disabled-people.html.