Having CP isn’t easy. Anyone who says otherwise is lying. I found ways to cope with the really awful days and weeks. I have spastic quad CP, which means I have too much muscle tone in my body. It also means all four limbs are involved. The left side of my brain sustained more damage. Meaning my right hand is much more involved than my left. Doctors think this is why I’m left handed. My brain compensated for my right hand being half a hand, at best, most days. Yes, I feed myself, and I can physically write. I print much better than cursive. The only time I use cursive, on a regular basis, is to sign my name. The reason I bring feeding myself and physical writing up is because they are two of my most frequent questions. They seem pretty random, to me, but now y’all know. I can do a lot more than these two tasks for myself. I’ll write a future post detailing many of them.
My tone is quite a bit based on my head space. I mean when I get upset, nervous, angry, cry, or excited my tone tends to spike. I have to try to physically calm myself down. It also spikes when I don’t feel good. Spikes simply put are when my muscles get really tight. Deep breathing helps as does exercise. In addition: prayer helps center me as does music. I have a CD of ocean sounds that is also very helpful. My therapists gave me a copy of their ocean sounds tape as a kid. Years later: I found a CD version. I gifted a copy to my able-bodied brother/journey partner to help him relax as well. It serves us well. We tend to overthink and stress ourselves out. It’s a really wonderful gift that God gave us each other to lean on, too.
Why is CP my monster y’all ask? Well, metaphors define my life. Crazy/beautiful and play ball. The CP monster became the third life-defining metaphor. I was talking to my brother/journey partner several years ago ketchuping (The spelling is just for him to make him smile as it did me the first time he did the spelling in a text) up while he lived in NYC). He asked me how I was. My response was my tone is too high and it makes no sense. “Are you sure?” Yes. We went through the rapid fire checklist, anyway, just like I knew he would insist.
We kept talking it out and he said, “Your CP isn’t you.” What? I’m confused. The power chair is a pretty useless thing to try and hide. I’m in it. “Okay, yes, hear me out. Maybe we should compartmentalize it for you. Give you a way to see and deal with high tone days easier.” I started to grin. Go on. “You don’t like your CP?” I see it as both blessing and anything but. (I’ll explain why that is in a future post.) “I know, but days like this?” After a pause and a deep breath: I hate days like this, honestly. “There you go. That’s it! Be honest with me.” After a minute he said, “Okay, bad CP/high tone days are your monster.” What? “Yeah, your monster. We just need to figure out how to lock it back in its cage it broke out of, Stace. You have the keys to the cage, always. We just have to shove the monster back in and then you lock it. Those days don’t control you that way. You control them.”
I started laughing because I saw a cartoon monster in my head. You know this is absurd, right? “I do, but it’ll work if you go along with my absurd notion.” Okay, it’s worth a try. “Yes, ma’am.” Don’t call me, ma’am. We both laughed. He was right (as he usually is). It became part of my chosen family shorthand as well. It feels good to name the bad CP/high tone days something else. Then deal with them together in conjunction with the people who know me best and love me no matter what.