4 Ways I've Built a Better Life With Cerebral Palsy
Hard thick plastic encompasses the whole of my lower leg. Vibrant red Velcro straps hold my leg in its sturdy grasp. Stiff but safe steps I walk. Heat radiates from my skin inside my trusty friend the brace. Shoes groan in pain when they stretch to let my plastic foot in, only to be smashed in return. The best and worst friend would hold my body prisoner for the day. The moment that air would caress my sweating skin outside the brace was no doubt one of the most exhilarating freedoms I saw in those times. I stumbled around like a calf just learning how to walk with weak, unused muscles. The clock chimed 12, and time would escort my brace arm in arm to me in the morning.
I went through this every day until I was released at age 15. My braces were my best friends, but I was lucky enough to be let go. I have a milder class of spastic cerebral palsy. Cerebral palsy is different for every person. There are always going to be challenges. It’s easy to imagine all the possibilities if CP wasn’t a part of my life. However, these are the cards I was dealt, and I am choosing to see the light instead of the dark. Here are four tips that have helped me, and I hope will help you too.
1. Know your limits.
I once went on a series of walking tours through New Zealand and Australia for two weeks. No thought of how hard it would be on my body ever crossed my mind. The trip was going to be amazing, no matter what. I didn’t want to be left behind by the group, so I pushed myself to be able to walk with them. By the end of the first day, my whole body hurt from my upper back to the bottoms of my feet. I kept pushing myself to keep up day after day. With my exhaustion came a person that snapped at others with growing irritation as the days went on. I was miserable, in pain, and couldn’t care less about what I was seeing at the end. My body had reached its limit that first day because I didn’t pace myself. The walking tours were really hard, but I could have saved myself some pain and grumpiness if I had paced myself, rested whenever possible, and didn’t push quite as hard. It probably wasn’t my best idea to go, but I did and survived.
Now I make a point to listen to my body. I still push myself when I have to, but I know which lines to cross and not to cross. Know what you can do, can’t do, and when there’s a grey area. However, you never know until you try!
2. Communicate and ask for help.
I hated asking for help when I was young. I would try to be as “normal” as possible. As my mother would say, I’m a glutton for punishment. If everyone was going upstairs, that’s what I would do, even if there was an elevator. I would ignore the accommodations the teachers gave, and hand write everything I could until my hand gave way. Exhaustion stuck to me like glue. There were times where it worked, but often I would be forced to ask for help because I really did need it.
Asking for help is humbling, and for me an everyday occurrence. I had the realization one day that asking for help is absolutely fine when you need it. You are still capable. Asking for help doesn’t mean that you can’t do anything. People aren’t going to judge you for needing help. It’s better to communicate what you need rather than leave people guessing. Do what you can and then ask for help.
3. Have a goal.
Sometimes it’s easy to get lost in the midst of routine and everyday clutter. You settle for what you have, or you don’t have time to think. I tend to get stuck in life. If there’s nothing to do, I sit on my butt and Netflix. Having a goal motivates me because I am getting something I want out of the process. Goals move a person forward, even if just a little bit. As a person with cerebral palsy, I think it’s important to always be challenged to improve, even though it can be hard just to function sometimes.
Besides motivation, goals bring hope that something is going to change. I need that hope to be able to go through my day. It doesn’t have to be big. Right now I’m practicing having balance on stairs. Every day I work on lifting my foot up on a step without falling. Make a goal that is small, and something you can do to improve yourself.
4. Go at your own pace.
It’s really easy to compare yourself to others in this society. Does survival of the fittest sound familiar? I will never fit into that category, ever. It takes three times more effort and energy for me and many others with cerebral palsy to accomplish what comes easy for an able-bodied person. All I see are the backs of others when walking, because even among friends I am the slowest. It’s easy to feel inadequate when others seem to be able.
You are your own person. We have challenges that most people don’t. Life is not a mold you have to fit. Everything can be accomplished if you just keep working. I have so many regrets because I decided I would never be good enough and quit. You can do it. It doesn’t matter how long it takes.
A very wise woman told me that “done is better than perfect.” If perfect is a person rushing around without stopping to think, I never want to be perfect. Go your own pace in life. It may look totally different than the person next to you. The tortoise beat the hare because no matter how slowly, he kept going. Don’t ever stop!
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