I know I can’t control everything. I can’t control that I am disabled. I can’t control that I was born premature. However, I like to think that I can control certain things relating to my disability. For example, I’m the one who usually decides when I should or need to ask for help for whatever reason. If someone offers help, I can tell them what kind of help I’m seeking.
Before you may think, “Wow, what a control freak,” I can assure you that I am not one. I’m a planner, sure, but I don’t think I’m a “control freak” in that sense. There’s just so many variables when it comes to living with a physical disability. If I’m invited to go somewhere, for instance, I have to know not only where we’re going, but also how accessible the location is. If the location is far, how I’m going to get there? Will I have to use public transportation, or is it reasonable to take a cab? Am I going to have to travel alone, in which case a taxi is my only option? Am I going to have to carry anything? Should I take a backpack? Perhaps, but the backpack can’t be too heavy as it will affect my gait pattern, thus making it harder for me to walk. I’m also expending more energy. All these questions are dizzying to you, I’m guessing. Absolutely they are, but the better I can answer these questions, the more control I will have. The more control I have, the more I feel at ease.
Ease is very important, too, because of all the components of cerebral palsy that I can not control: spasticity; high muscle tone and tightness; aches; poor balance; fatigue. How tired will I be today? How stiff? Obviously I’m not deluded enough to think I could possibly answer those questions. Instead I find comfort in what brings me ease, and prioritize it.
Honestly, one of the reasons cerebral palsy doesn’t take over my life is because I don’t let it. My disability cannot totally control me without my consent. This particular position is a privileged one; I will admit that openly. As you know, another person’s position may be different, as no two cases of CP are the same. Each case presents with varying levels of severity. I acknowledge that, and can only hope that my acknowledgement counts for something somewhere.
The Spastic Diplege 