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My Secret Life of Having Cerebral Palsy

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It’s funny how we can feel so alone when we’re dealing with a challenge of some sort in life, whether it be a physical or mental challenge or the many challenges of making a living, figuring out what your purpose is and finding your place in life. It can often feel like no one else understands our pain and battles. However, I’ve found that if you look, you’ll see that you are never really alone with what you’re facing. Everyone around us is facing some kind of battle, and although no one will ever be able to understand the battles you face in the exact same way you experience them, I’ve found someone out there usually has an idea from having lived through something similar to your own.

For me, today was the day I looked around and saw I wasn’t alone in my struggles. I’ve lived 25 years with cerebral palsy and counting, and I am truly grateful. I can’t say I always had this perspective or that every day I awake feeling grateful, but I have a newfound respect for having to live every day with the challenges I face.

My challenge is not so much the CP itself, although every moment it does pose a challenge for me. It’s more that I have been able to hide my CP. Although the doctors said I’d have to use a wheelchair, I am fortunate enough to have the ability to walk thanks to everything my adoptive mother did with me on the beach each day, bending my limbs and teaching me to balance and grip my toes in the sand. I also am fortunate enough that I am able to deliberately focus on my movements so I can walk and move my body for the most part “normally.”

I think of myself as a manual car. In order to move normally, I have to deliberately think about almost every movement I make as I make it. For example, when I walk, I have to remind myself to put my heel down and then to grip my toes, otherwise I walk differently. Although every day for the past, I’d say 15 years (since I became aware that I was capable of controlling my movements by focusing on deliberately moving my body) I have continually told my body what to do as I go to do it, it still has not become automatic. It’s especially challenging when I’m stressed or tired.

The challenge is not only my CP and controlling my movements, but that most people don’t see it. Many don’t realize the amount of work I have to put in just so I walk and move as naturally as possible. With this comes the expectation that I am just like everyone else. It’s not so easy being seemingly normal when in each moment I’m doing everything I can to control my movements. Because I’m always so focused on controlling my physical movements, I lack in other areas such as remembering things and multitasking. I have to work twice as hard to keep up with everyone else, as I’m sure many of you know too well.

Having CP you can actually hide with an incredible amount of work can be frustrating to say the least. The CP is still there. The stiff muscles are still there. Balance is a constant battle. Walking correctly requires me to remind myself of every movement in every moment, as much as I can when I’m also trying to focus on what I’m saying, retaining information or understanding what I’m looking at.

Although I am so grateful for what I am capable of, my family doesn’t understand what it’s like. They say I’ve overcome CP and that I don’t have it anymore. But that’s just because I exert so much effort controlling my movements. If I stopped making the effort, there would be no question that I had it and it would be very visible.

On the other hand, although it can feel frustrating and very lonesome since people think I’m “normal” and don’t realize how much I’m not, I’m blessed to have CP. It’s made me stronger. I have so much understanding for other people’s challenge and hardships. On days that I get frustrated with myself, I remind myself that I work hard just to keep up with where everyone else is and I am a fighter for it. Instead of being harsh on myself for how challenging simple movements are for me, I’ve learned to love myself and accept the limits of my body so I can work with it instead of fighting it.

I’ve come to realize I have a deep relationship with my CP. I understand the ins and outs of my body and how my mind has to work together with it.

Waking up every day with CP has taught me about my strength and abilities, and having understanding for everyone’s challenge whether visible or not. I’ve learned how important it is to love yourself where you are and with what you’ve got to work with.

It may not always be easy when the mind wants one thing but the body doesn’t want to cooperate, but your mind and your body are doing incredible things to work together. What you can’t control of your body, your mind can make up for it. Go easy on yourselves. Go easy on your CP. I promise whether it’s CP or any other kind of challenge, you are so much stronger for it. You’ve overcome so much because of it. You know a thing or two about being a fighter, dealing with adversity, judgments, frustration and willpower because of your daily battles with whatever you’re going through.

Had it not been for my own personal struggles with CP, I would honestly not be as strong as a woman as I’ve had to become to combat not just my CP, but the bullying, judgments, failures, falls, setbacks, challenges, pain, fears and self-doubts that came along with it.

What about you? How have your challenges made you? I am forever grateful for how CP has shaped me into the person I am today. I hope you can learn to love all of your challenges as well as your strengths and successes.

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Getty image by Px Hidalgo.

Originally published: January 26, 2018
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