HOW DO YOU LIVE AN INDEPENDENT LIFE WITH CEREBRAL PALSY?

When you read my blogs, you hear me say that no matter what kind of cerebral palsy you have, each of us has a unique spin on it. As we also know, the cerebral palsy community has a high rate of depression. I know this all too well. My depression brought me to places I never thought I would be. I have told you about building your mental toolbox. Being as independent as you can is an essential tool you can have in your mental toolbox. 

There are so many levels of independence. We all know that when we have cerebral palsy, we strive to live life without limits. However, it can feel like we D.O. have limitations because of the perceptions of others. We can also feel limited because our bodies won’t let us do what we want them to do. 

I want to pose the question, “How do you live an independent life with cerebral palsy?

  • Are you capable of living100% independently? 
  • Do you allow people to help you?
  • Do you find that letting people help your independence grow, or do you become lazy and let them take over?
  • When you have someone help you (i.e., PCA, family, friend, etc.), do you work alongside them?
  • Do you do what you can while others do the tasks you can’t?

Here’s what I have learned over the last year that I’ve been on my own: even an able-bodied person has times when they need help. If you add a physical disability like cerebral palsy where we use 3-5 times more energy just to do the simple task (what I call W.O.W.C.P. – work out with cerebral palsy), you realize that asking for help isn’t shameful; in fact, it might be necessary. 

So many people with cerebral palsy have their thoughts about what it is to be independent. Some believe to be fully independent is to take everything on themselves because they don’t want to feel held back and don’t want to feel like they are failures in life; this is how I have felt. At one point or another, you will feel like you only have your C.P.; during this time, you do anything just to prove to yourself and others that you’re not just your diagnosis. 

When we prove we’re not our diagnosis, it’s not always about proving to others, but most of the time, it’s about proving it to ourselves. Yes, it is hard when someone says we can’t do this or that, but how much should we listen to those people when it comes down to it. Most of the time, the people who are saying these things are the ones who don’t know us; in the long term, is it worth changing those people’s opinions. Don’t get me wrong, I’m not saying we shouldn’t change people’s views about disabilities, but I’ve been around long enough to know when it’s something worth fighting for or if I should just roll my eyes and say it’s not worth it. When I’m at the point where I feel like it’s worth fighting for, I will, but fighting also wastes energy, and there are just times in life I want to save all that extra energy on something that will make more of an impact. I’m the type of person who will fight for something that will impact me and others around me. 

The biggest thing that I’m starting to learn is how to use my energy where it’s best needed. I’m not the best at it because I want to do it all. It’s who I am. Most times, I’m not proving anything to anyone but myself; this is just who I’ve always been; I think a lot of it has to do with my cp. I know I shouldn’t have to prove anything to anyone, most of all myself.

Published by sixlegstoindependentlifefromawalker

Hi I'm Marie W.O.W.O.C.P ( Work Out With Cerebral Palsy) Just an average person living with six legs. Two on me and four on my walker. I live a full independent life with cerebral palsy. These are life stories and events about how I overcame everyday life with cerebral palsy. I hope by sharing my life story and lessons I have learned I can help others in the world to show them that disability is only a word. Just because our body may not be capable of everything we want to do but with a positive outlook on life we can still get where we want and need to be.

Leave a Reply

%d bloggers like this: