“Quality of Life” in Cerebral Palsy

“Quality of Life” in Cerebral Palsy

I think this one of the most widely known quotes within the disabled community. I can’t count the amount of times on all of my fingers and toes how often I’ve heard this phrase and for some reason, much to my surprise, the quote “Let’s talk about your quality of life” knows no limit of age.

I think the first time I heard a doctor say, “Let’s talk about your quality of life” to me I was about 10 years old and I was curious if she ever saw me one day walking without my walker, a real dream / goal of mine at that age. I swear if she had a PowerPoint presentation prepared at that moment she would have loaded it up, complete with a stick for pointing at all of the pros and cons of walking independently as she listed them off to me.

I didn’t know how many more times I would hear her say this over the next 11 years. In fact, it seems like every time I ran into a problem or purposed an idea, it couldn’t be without discussing my “quality of life.” And I have to tell you, my life is pretty good.

Doctors are not always 100% right. I chose to walk independently that day, I did so for roughly 6 years. At about 17, I was diagnosed with chronic pain. I had many mixed emotions, wondering if I had done the right thing that day — should I had continued using the walker, I may not have this pain right now.

But somehow I think that doctors, society, and even patients get lost in all of the language. We start focusing on well, if I walk a little more today, I’ll have more pain tomorrow. Yes, that may be true, but what did you gain in the steps that you walked? Was it freedom? A sense of normalcy? Independence? Hope?

Because I think all of these things are so important and factor so high on the quality of life scale and yet they are so often left out. Sure, now I have a walker and a power chair when I need it, but overall I walk more often than I use my power chair or walker combined.

You don’t know how long you’ll be where you are with what you have — no one does.

For me, the feelings of independence, normalcy, hope, etc. were so much more important, they meant so much more to me than anything that could have, might have, or in fact, did go “wrong” by me choosing to walk and walk unaided. I am so happy and proud that I can do that and continue to do so, I know not everyone is so lucky. I have always felt like quality of life should never be about pain management or prevention. I completely understand why it is so important and believe me it is but I think what makes someone happy triumphs. I am over the moon that for 6 years I walked pain free, on my own. I am so proud that I will gladly sit with the consequences.

Tell me about the phrase “quality of life’ and you in the comments below!

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Hello, My name is Brittney and I am a columnist with Cerebral Palsy. I focus on writing about lifestyle and believe that everyone's experience is relevant, no matter the disability. I support, and advocate for, the mainstreaming and normalization of children with disabilities and their families, as well as advocating for parents and children who need to go the more specialized route. I hope that my content provides a positive reinforcement that it is possible to live a happy and fulfilled life even with a disability.

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