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What Moving Forward Looks Like in My Life With Cerebral Palsy

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Yesterday, I said official hellos and goodbyes to different forms of comfort in my life. Comfort and discomfort are two very powerful things, especially with a lifelong disability that society isn’t always understanding about. I said hello to a new lift to get into my house alone, something I couldn’t do before. I said hello to a bigger room and office. I said hello to my own bathroom since my life-changing tibia and fibula surgery two years ago. I said hello to a new walker used to get around in those places. I said goodbye to a wheelchair that served me well and helped me get a grasp on independence for many years, and hello to a new one. Lastly, I said goodbye to the amount of time I will be using my wheelchair around the house (a new adjustment in itself) because of the places I have to use my walker.

I am totally ready for this new chapter in my life and absolutely grateful for it, but as with anything new, my new chapter is scary and has its frustrating aspects. As a person with a movement and muscle disability, simply because my circumstances are different from the majority in society and my brain and body have a disconnect between their messages, I knew going into this chapter would have its feelings. I didn’t realize my feelings would be as strong as they are at times.

I’ve been over the moon excited to have my own way of going in and out of the house without help, and the space and views it all comes with, but I’ve had frustration when it comes to accepting what my body is doing physically and emotionally. I’ve needed someone by my side so far every time I wanted to do something in one of these rooms, because my brain hasn’t allowed itself to have faith in my body and its new surroundings yet.

I’ve been so angry that I’m 22 and need help in areas many people take for granted. I’ve wished I could go back to my life before the surgery I had to ultimately improve my abilities as an adult. I’ve wanted to get on my knees and crawl everywhere like I used to instead of using my walker. I’ve wished I didn’t have cerebral palsy, because it all seems easier than the frustrations my body goes through or the emotions I feel when I need help but don’t want to ask. I’ve even been mad for not allowing myself to be proud of every little thing I am doing right. It doesn’t all happen overnight.

Between the emotions of the newness and grieving from losing a very special person in my life a year ago today, I have every right to want to stay in bed all day and cry and scream until I can’t anymore. I’m not saying I’m not sad or frustrated enough to want to do that, but that’s not who I am. It may be tough to even try the newness or not wish my condition was more cooperative, but at least trying gives me the possibility of improvement to where I want to be. Not trying has a definite outcome — not getting where I want to be.

It’s funny, during the 15 months of rehabilitation post tibia and fibula reconstruction surgery, I felt very similar emotions. After my doctor told me that I would be able to regain strength after two days and I didn’t end up walking at all for about eight months, I felt as if I would be dependent on others forever. Still, I got up every day and tried to put one foot in front of the other. I look back and I realize I’m successful in ways I thought I would never be. I’ve been here before, and I believe I will one day watch all my dreams unfold in front of me, and I’ll be exactly who I’m meant to be.

Change is often scary and deeper than we realize. Everyone’s reasons are different. We may not understand why our comfort zone constantly has to change, but I believe it makes us who we are, exactly when and as we are meant to be. In my experience, it eventually also turns out to be better than we once thought.

You don’t know anyone’s story. I hope the bravery of sharing mine shows you a way to be compassionate and proud of everyone you come across. We all fight and overcome battles many don’t know about. I also hope my story helps someone feel heard and free because I know there are people who feel the same way I do. Keep going. You have a unique message to share with the world.

Getty image by Sensay.

Originally published: October 29, 2019
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