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 3-5 times more energy to do the simplest tasks. (For example, putting our socks and shoes on just about most able-body people it’s as easy as 123, and they’re out the door. For me and those who have cerebral palsy, it feels like our day-to-day yoga routine!) I can’t say for everyone, but it can take up to one hour to put my one sock and one shoe on. (I was doing the cat, dog, cow pose before I knew what cat, dog, cow pose was, lol)
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 and 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 when setting up your outfit the night before. Also, pick out two so you have a backup. When you do get your breakfast on you, you have a backup! LOL).
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:
- Take a shower the night before
- Set out what you can for breakfast (even if it’s just setting your table)
- Get your clothes ready (including that second outfit you may need! LOL)
- Make sure your bag is packed (i.e., your pocketbook, wallet, keys, any devices that will help with your day, money, tickets for transportation.
- 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 their lack of independence and pain.) I’m only human, and like any other human who experiences depression, there are 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. Building this toolbox means that you come up with ideas to help cope with 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 do to help myself up and go down a black hole for weeks or months at a time. (Note if you think Pretty Spiritual podcast is a religious podcast, it’s not.
When I was in my 20’s, I went down a black hole where my depression got worse; it wasn’t until my upper 20’s 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 think going to see someone to talk to, like an LCSW, can be seen as a sign of weakness or something to be ashamed of, but it’s not. It should be something to be seen as an improvement. Just like how a person with cerebral palsy, go 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-body people sometimes need that third person that doesn’t know anything about you or your history to talk with. The therapy can also help you create that toolbox by
- Come up with some scenarios to work on by acting them out. By doing this, it would give both of you knowledge of what triggers you to get upset.
- Pointing out your triggers and working on them with you
- Your therapist might ask you to write down any trickers 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.
Now, I took the block out of me that the cerebral palsy was limiting me. I was on my way to move on with my life. I was entering my 30’s hoping that I would make up for the lost time. I would spend the next few years finding out who I was, maybe being the life I dreamed of. I have an associate human service and certificate t 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 had 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 me 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 scraws 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. The Cerebral Palsy had other plans. Due to the spasms that a person with cerebral palsy doesn’t event fell because there deep in the body nine-month I gave birth to a plate an eight scraws (the only thing I would give birth to.) had to come out because the spasms broke everything all over again. This time they put a rod and fake bone to help everything heal.
Through all this, I had to make my toolbox larger and develop some ideas that I could use while lied up to not go back into a dark hole. 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 bother 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. ( note 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 aways.
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 touch it.
Over the years since my broken leg, life with cerebral palsy has gotten more complicated. Not only have I to deal with cerebral palsy, but I had to deal with autoimmunity issues that fought hard to knock down cerebral palsy. I don’t know where I would have been if it wasn’t for that mental toolbox and many coping skills that I developed.
At the time, I had that I had autoimmunity issues; it turned out to be PsA. (Psoriatic Arthritis). Psoriatic Arthritis was very hard in my life. It felt like good vs. evil in my body. Psoriatic Arthritis tried so hard to knock out cerebral palsy. This time was a very emotional and trying time for not only me but the cerebral palsy. At this time, I felt like I was at a crossroads in life. Do I stay in this dark place, curl up, and just let the Psoriatic Arthritis get to me. I told myself that I would not let this get to me.
I sat down with myself to look at life in one of three ways.
- Do I explore what life was going to e like by looking at it as Psoriatic Arthritis?
- Do I explore what life was 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. Not knowing by doing this, I unlocked a door I was always afraid to, 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 saw that I was keeping this door locked. ( I think part of my issues, with others that had cerebral palsy, 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 that negative to made me feel worse than I already about who I was.)
Getting to know the United Cerebral Palsy group showed me that there were people out there as I was about cerebral palsy. In the end, I started falling in love with this part of my life. By falling in love and aspect with became a considerable tool in my toolbox.
While getting to know the people in the United Cerebral Palsy group, I got close to this one person who showed that it’s okay to have cerebral palsy and still have the exact needs and wants that other humans have. (this always has a challenging concept for me to teach myself that just because I have cerebral palsy, I still have the needs and opportunities as everyone else. It’s just that sometimes I feel like I should dedicate myself to those who have helped me in life.) Then that selfishness because the family and friends helped me become independent, so I realize within myself I have to find a balance of having my own life to show everyone that helped me get to where I am today and be there for those people also
Due to my fighting personal giving up on myself and life wasn’t and will never be. My friend saw the struggle I was having. Only being and a few years older than me took me under his wing. He showed that everything that I was feeling was normal. The way he got me to see and aspect this part of my life was using social media. The more people put doubts or limits on me, then I use that toolbox to help me not to let myself go down a black hole.
We always hear about the negativity about social media but, we never hear about the positive side of social media. Social media and my friend have shown me how the cerebral palsy community is like any other community. I learned if you put cerebral palsy in social media, you get all these support groups. When getting to know these social media support groups, I found how many other people in the cerebral palsy community feel the same way.
Each cerebral palsy group on force on different idea/subject about life with cerebral palsy; for the most part, they are open-minded to everyone. Some are close-minded and think they know everything about cerebral palsy. The thing is, no one person can’t say know everything about every type of cerebral palsy. There are many TYPES of cerebral palsy, cerebral palsy does decline or improves that being, said there are rules, for lack of a better word to this being and I will get into to that in another blog) People should know that you might have the same type of person next to but for the most part, every person has a similar kind of cerebral palsy. ( EX: Jan and Jane met in a cerebral palsy social media group. They have the same kind of cerebral palsy, but the cerebral palsy can present differently). Not genuinely knowing or understanding the person sitting behind the other computer can be challenging because unique factors go into just one person labeled with the same type of cerebral palsy hundreds of other people have. ( it’s just like saying no two snowflakes are alike, no two cerebral palsies are alike)
Someone with cerebral palsy is going to be battling a lot of dark times in life. It’s all about their attitude and outlook on life. Life with cerebral palsy will never be easy but giving up is never the answer. Overcoming the nativity that someone with cerebral palsy can have and feel can be challenging, but you can always make things a little better for yourself.