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A Day in My Life With Quadriplegic Cerebral Palsy

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I find it very fascinating to follow other people’s lives. Everyone is different, and I feel that is what makes life more mysterious and beautiful. One of my hobbies is following different vloggers on YouTube. I find it both fascinating and entertaining to see how their day goes and the different energies they put out there to the world.

I was inspired to write a bit of a different piece based on my life with cerebral palsy. I hope that it promotes awareness and you can see into my life a little more.

Mornings: I am going to be honest right off the bat. Mornings are not particularly kind to me. Ironically, I am a morning person and like waking up early if it means getting more things done during the day, particularly writing work. I say mornings are not kind because I am my stiffest in the mornings. Being stiff makes it difficult and painful to move. Once I get moving though, I do the normal things like eat breakfast, check my email and watch a little YouTube to get my day started. Once I do that, I make it a goal to work on something creative, whether it is writing or coloring.

Afternoons: Once the afternoon hits, I tend to start to feel worn down, and many times I decide it is probably best for me to lay down for about an hour or two. This usually happens after I have my lunch. I do not always fall asleep, but the rest is needed to get a break from being in my wheelchair all the time. Spending all day in a wheelchair can do a number on your body, especially your lower back. I do deal with chronically nagging pain, and even my regular doctor recommended taking a bit of a break to relieve the pressure on my body.

In the afternoons I often take an extremely hot shower to release the tension in my muscles. This is very relaxing and therapeutic for me, and I always feel leagues better after taking a shower. I cannot stand or walk at all, so getting in the shower can take a lot of energy. I must get on the floor, make sure there is a towel covering the threshold of the shower, crawl in, start the shower, and then bathe. To bathe, I just sit under the shower and scrub my hair and body.

When I first moved into my apartment, this shower routine was quite an adjustment, but as the days and months went by, I got used to the routine and it is like second nature to me now. Adaptations are very important when you live with a disability. I am very blessed that I am independently-minded and can bathe myself. There was a time when I could not do this independently, and if I am somewhere other than home, I may need some help getting bathed. I am fortunate that my parents taught me a way to do it on my own. I understand many don’t have the luxury of bathing on their own, and I am extremely lucky that I do, even as I age and things become more difficult.

Night/Evening: I often like to kick the night off by watching the news so I can have some idea of what is going on locally and worldwide. After the news, I figure out what I am going to make for dinner (I don’t usually do much cooking, as I live on my own in my apartment.) if I do make something, it is microwavable or something I am able to cook in the toaster oven or crock pot. Once I am finished eating, I like to get cozy and watch some TV with my fuzzy blanket on my lap until I get sleepy and decide to retire to dream land for the night.

There you have it! My daily routine as someone with quadriplegic cerebral palsy. My life may seem so simple and ordinary to you. Maybe you have an “ordinary” job and can interact with others in your office. As a writer, I communicate with other writers and others with cerebral palsy through Facebook off and on during the day. My life may seem solitary and boring to you, but to me it is a blessing and it is what I know. I treasure each day of my life and treat it like it is the best gift I have ever been given. Yes, I have my bad and horrible days, but even on those days there is something to gain and learn from. I have learned never to take life for granted. Treasure it until your very last breath!

Originally published: March 19, 2018
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