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Taking Care of My Body and Mind in Life With Cerebral Palsy

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Today, I woke up feeling like I wanted to give up on myself. This is one of many downsides of having cerebral palsy — for me, at least.  People with cerebral palsy know it takes three to five times more energy to do the simplest tasks. For example, putting our socks and shoes on — for most able-bodied people, it’s as easy as 1-2-3, and they’re out the door. For me and many others who have cerebral palsy, it feels like our day-to-day yoga routine! It can take up to one hour to put one sock and one shoe on. (I was doing the cat, dog, cow pose before I knew what they were!)

The daily struggle of having cerebral palsy is the most challenging part of my life. I am up in the morning three to four hours before needing to leave the house so I can not rush to the point where I will fall or spill my breakfast on my clothes before I’m out the door. (Hint: make sure to set up your outfit the night before. Also, pick out two so when you do get your breakfast on you, you have a backup!)

Speaking of the night before, getting into a routine of getting things ready for the morning is a good idea! Here’s a list of what I need to do when I know I have to be out at a specific time:

  1. Take a shower the night before.
  2. Set out what you can for breakfast, even if it’s just setting your table.
  3. Get your clothes ready (including that second outfit you may need)!
  4. Make sure your bag is packed — (i.e., your pocketbook, wallet, keys, any devices that will help with your day, money, tickets for transportation.
  5. Set out anything else you might need for the next day.

This helps me get my day started off well! But even when I do this, sometimes I just wake up like I did today, feeling like I want to give up. This is partly because of another downside of cerebral palsy — feeling the need to prove yourself to others. For a while there, that’s all I felt like I was doing, so I just gave up for a time in life. But now I know I was just giving up on myself.

While in this part of my life, I became very depressed. (Side note: people with cerebral palsy have a high rate of depression due to chronic pain, feeling a lack of independence, and other factors.) I’m only human, and like other humans who experience depression, I have good and bad days. Through my more prolonged battles with depression, I learned tools to deal with the shorter bouts of depression. As I heard on one of my favorite podcasts, Pretty Spiritual Podcast, during the longer stages of depression, you build a toolbox within you to help you get out of your depression. After about a year of not listening to this podcast, it brought to mind how I have downtime in my life and what I can do to help myself up and go down a black hole for weeks or months at a time.

When I was in my 20s, I went down a black hole where my depression got worse; it wasn’t until my upper 20s when I got a wonderful LCSW (Licensed Clinical Social Worker). I came to realize that if therapy were genuinely going to help, I would have to be truthful with myself because if I weren’t, I would only be hurting myself. I was doing well for a few years, getting out of the black hole. To face myself was still very hard for me. It can be very emotional thinking about this time in my life. People sometimes view going to see a therapist as a sign of weakness or something to be ashamed of, but it’s not.  Just like a person with cerebral palsy goes to physical therapy to improve their body, going to an LCSW is going to therapy to improve our mental health. People with disabilities and able-bodied people sometimes need that third person that doesn’t know anything about you or your history to talk with. Therapy can also help you create that toolbox in a few ways:

  1. Come up with some scenarios to work on by acting them out. This gives both of you knowledge of what triggers you to get upset.
  2. Pointing out your triggers and working on them with you.
  3. Your therapist might ask you to write down any triggers you might have had in the past week so you can talk about them the next time.

These are some tips I have learned over the years. My toolbox keeps growing because every time I go through a dark time, I develop a new tool for my toolbox. I was entering my 30s hoping that I would make up for the lost time. I would spend the next few years finding out who I was, maybe building the life I dreamed of. I have an associate degree in human service and certificate in recreational therapy with a concentration on gerontology. I hoped to go back to school and finish up so I could work in the gerontology field.

Unfortunately, cerebral palsy had other ideas for me. I was getting ready for the gym  (the most significant activity in my mental toolbox to help with my depression), and the cerebral palsy kicked in and gave my body a jolt that I couldn’t catch. I ended up on the floor with my right leg broken in three places. There goes any hope of moving on in life.

As anyone with cerebral palsy knows, cerebral palsy and broken bones don’t mix. I had to have a plate and eight screws put in to put my fibula, tibia and ankle back together. Hoping this would work, and all I would have to do was rest and heal, and I would be back in no time. Boy, was I wrong. Cerebral palsy had other plans. The plate and screws had to come out because my spasms broke everything all over again. This time they put in a rod and fake bone to help everything heal. While I did get depressed and down on myself, I had the tools necessary to cope during this time. With all the tools and the support I had, I was able to enhance my toolbox.

To enhance the toolbox, I draw upon my recreational therapy education, and what I would have my clients do if I were working with them. I got the idea from my brother because one day,  while I was in rehab, he noticing that I was getting bored and frustrated so, he brought me up a fuzzy art poster to color. This was a few years before adult coloring became very popular. Wouldn’t you know it? I got hooked right away. Whenever I was bored, frustrated, or in pain, I would go right to coloring and forget about all that.  Nowadays, events are my go-to activities to take my day-to-day boringness, frustration, and pain away.

Over the years since my broken leg, life with cerebral palsy has gotten more complicated. Two years after getting back on my feet, I was having pain in my right knee. My knee would swell up out of nowhere. It would feel like fire when you touched it. It turned out to be PSA, psoriatic arthritis. It felt like good vs. evil in my body. Psoriatic arthritis tried so hard to knock out cerebral palsy. I felt like I was at a crossroads in life. Do I stay in this dark place, curl up, and just let psoriatic arthritis get to me? I told myself that I would not let this get to me. I sat down with myself to consider looking at life in one of three ways:

  • Do I explore what life is going to be like by looking at it as psoriatic arthritis?
  • Do I explore what life is going to be like as an adult with cerebral palsy?
  • Do I give up on life altogether?

I decided to take the high road and come to accept my cerebral palsy because I knew at some point that the PsA would go into remission, but the cerebral palsy would still be there. During this time, I put my pride aside and looked up a United Cerebral Palsy. I unlocked a door I was always afraid to open, but it made my life better. While at United Cerebral Palsy, I got hooked up with a group for fully independent adults with cerebral palsy and other disabilities. After going a few times, I realized this was the first time I felt comfortable with others who had cerebral palsy and other disabilities.

The more I went to United Cerebral Palsy, the more of a fool I realized I was for keeping this door locked. Before joining this group, I never met positive people with cerebral palsy.  I wasn’t optimistic about my cerebral palsy on the inside. I didn’t want to be around negativity that would make me feel worse than I already did about who I was. Getting to know the United Cerebral Palsy group showed me that there were people out there like me. In the end, I started falling in love with this part of my life, and that became a considerable tool in my toolbox.

While getting to know the people in the United Cerebral Palsy group, I got close to one person who showed that it’s OK to have cerebral palsy and still have the exact needs and wants that other humans have. This has always been a challenging concept for me, as sometimes I feel like I should dedicate myself to those who have helped me in life. I have to find a balance of having my own life to show everyone that helped me get to where I am today that their efforts were worth it, and be there for those people also.

Due to my fighting persona, giving up on myself and life wasn’t and will never be an answer. The more people put doubt or limits on me, the more I use that toolbox to not let myself go down a black hole.  My friend saw my struggles, and only being a few years older than me, took me under his wing. He showed me that everything I was feeling was normal. And he helped me connect with others using social media.

We always hear the negativity about social media, but we rarely hear about the positive side of social media. Social media and my friend have shown me that the cerebral palsy community is like any other community. When getting to know these social media support groups, I found out how many other people in the cerebral palsy community feel the same way. Each cerebral palsy group focuses on a different idea/subject related to life with cerebral palsy, and for the most part, they are open-minded to everyone. Some are closed-minded and think they know everything about cerebral palsy. The thing is, no one can know everything about every type of cerebral palsy. There are many types of cerebral palsy, and just as no two snowflakes are alike, no two cerebral palsies are alike.

Someone with cerebral palsy may battle a lot of dark times in life, but giving up is never the answer.  Your attitude and outlook matter.

Join Our CP Journey to connect with others who have cerebral palsy here on The Mighty.

Getty image by Christine Kohler.

Originally published: October 7, 2021
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