Today, on World Cerebral Palsy Day, my mind is occupied with many thoughts. To be quite honest, I’m struggling with what to say about it that I haven’t already said.
Last year, I wrote a Facebook post about having CP to commemorate this day. I really did debate just re-sharing that on my personal page today, mostly because it feels like not much has changed since last year. I’m still making my disability fit like the perfect pair of shoes, I’m still overcoming certain anxieties…and I’m still blissfully in love. I don’t think those realities are altering any time soon, and that’s perfectly fine with me (especially the being-in-love part).
I got to thinking about how sometimes I’m not in the mood to share my thoughts. I’m having a day like that today. It could be because I’m physically worn out from this weekend. In fact, last night on my way back home from seeing a film at my local movie theater, I had to stop and rest at least five times as I walked a distance of maybe four or so blocks. I never used to have difficulties walking that kind of distance, especially not when I was much younger. I suppose I dismissed the fact that it takes a great deal of energy for me to walk, much more energy than someone who is non-disabled. I can’t dismiss it anymore, that’s for sure. The physical manifestation is too obvious, and took a huge toll on me. I was out of breath, my feet were aching, and my arms felt sore.
Or maybe I’m not in the mood to share because right now I don’t want to be the “voice” of something. To be clear, this is not me admitting that I usually am the voice of what it’s like to live with cerebral palsy. I certainly am not. I actually don’t think there is such a thing, since as we all know by now, every case of CP is different. However, I will say that I am the voice of my own experiences. I try really hard to own and embrace that voice, to make it count for something.
I have to admit that there’s a lot of pressure to overcome feeling physically and mentally exhausted, to just shrug it off because so many people expect things from me, like being the strong and brave one all the time. Today I’ve tried to answer, “What’s so bad about needing to rest?” or “What’s wrong with being scared sometimes?” I think the answer is this: nothing. Admitting that I am exhausted from time to time doesn’t mean I’m weak. I just think that I have to be gentle with myself, more than I’ve been in the past. I deal with realities that my non-disabled friends don’t have to worry about: like accessibility; stamina; or the fact that having several surgeries was a big part of my childhood. It just was. I am not complaining, I’m being honest. I can’t change what happened. I can only move forward as best I possibly can.
As for being fearful, I just think it makes me human. We’re all afraid sometimes. I can’t possibly be brave every second of every day or in every situation related to my disability. That’s not real. I’m allowed to be frightened. I’m allowed to be sad once in a while. I’m allowed to not want to say much about anything some days, because some days are easier than others. Some days are really hard for goodness sake, and it’s not the worst thing in the world to say that out loud. Or write it in a sentence.
The Spastic Diplege 