Sick and Tired

There are times when having Cerebral Palsy is frustrating. The past few months have been hard for me. I’ve been experiencing increased spasticity, particularly in my lower extremities.

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.

I also have a distinctive gait that is commonly seen in people who have Cerebral Palsy. Flint Rehab states, “A scissoring gait is characterized by the knees and thighs pressed together or crossing each other while walking.”

The cause of this gait is high muscle tone (spasticity) in the hip adductors. The muscles that bring the thighs together are known as the hip adductors. Internal hip rotation occurs due to the continual contraction of these muscles, and the upper section of the legs cannot separate during walking.

In the shower, my legs often scissor. This makes it hard to get cleaned up. Sometimes my PCA has to hold my legs apart so I can wash up. Involuntary movements also happen when I’m in bed. When my legs are crossed, it’s hard to sleep.

When I am flat on my back, my back will often arch. My hands are usually clenched into fists when I am laying down as well. Not having control over your movement is frustrating.

Unfortunately, the physical symptoms are just one part of my life. This year has been filled with bureaucratic hurdles. I’ve had to deal with health insurance, the local community college, and the Social Security Administration. It is frustrating to have to figure this out.

I am due to receive a new walker soon. My PT has already written the letter of medical necessity but he still has to submit it to my insurance company. I then have to wait for the health insurance company to approve the request. Can you imagine waiting to find out if you will be receiving something that allows you to live life? Without my equipment, I would be stuck in bed all day.

Disabled people also struggle to find jobs, get married, and live independently. 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.

I began looking for work in December 2019. I have filled out hundreds of applications since. Sadly, some employers have rescinded interviews after I tell them I have Cerebral Palsy.

I am 24 years old and have had one paid work experience, writing for a magazine. For me, disclosing my disability to potential employers has been a challenge. I know I am not required to. When I do so, they no longer want to interview me. Cerebral Palsy is an apparent physical disability, and I want potential employers to know this. I can’t hide my walker or power wheelchair.

Amid all of the challenges I face, I try to remain grateful. I’ve met many excellent teachers, doctors, PCAs, and therapists. They don’t give up on me, which means more than they know. I am blessed to have a loving family and wonderful friends as well.

Some days with Cerebral Palsy are harder than others. I do the best I can and try to remain positive. My disability is part of who I am, and there is nothing wrong with being disabled.

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/.

“Scissoring Gait and Cerebral Palsy: Causes, Risks, & Treatment.” Edited by Barbara Brewer, Flint Rehab, Flint Rehab, 26 July 2021, https://www.flintrehab.com/scissoring-gait-cerebral-palsy/.