Finding My Version of Normal as an Adult With Cerebral Palsy
I was born prematurely. My mom’s due date was in early September and I was born July 3, 1989. I spent over a month in the hospital and was sent home on a heart monitor with my very young parents (18 and 21). I went through various tests and check-ups at all of the childhood milestones. Early on, the doctors told my parents to set their expectations very low. I probably wouldn’t walk and I would probably have severe learning disabilities. They said I would never be independent and live a “normal life.” It took me until I was almost 2 to learn to walk, but I learned to talk earlier than typical.
When we established care with a doctor, once my dad was out of the military and back in his hometown, I received my diagnosis. I have cerebral palsy. I have spastic muscles on my left side. As a 3 to 4-year-old girl I had eye patches to help correct my vision. Then I was fitted for my first brace for my left leg. I didn’t really know I was different; I was just happy, and my mom was happy I was alive. She knew I would have difficulties throughout my young life, but she didn’t call me disabled because I was her daughter and that’s how she knew me.
Kids can be cruel. Preschool saw me with broken glasses. I still wasn’t really cognizant that I was different; I was just a little girl who liked purple and princesses. Kindergarten introduced me to the difference. I asked a fellow classmate if I could have a turn using the bouncy ball with a handle and was told “No, you can’t. You have an icky leg.” I just walked away. My limp was suddenly something I was ashamed of, and I went and sat on top of the monkey bars by myself. I don’t remember what 5-year-old me thought. I was probably upset and just wishing for a turn on the bouncy ball.
In elementary school I learned to hate recess and P.E.; these classes and play time made it clear I wasn’t like the other kids. Mean kids would run away knowing I couldn’t keep up, and some of the activities in P.E. were just painful. I didn’t know that behind the scenes the teachers were pressuring my parents to put me in special education. They dug in their heels and stuck to their original idea of treating me like the other kids and making allowances when I truly couldn’t do something. The problem was that academically I was average to above average, but the school only saw the CP as a potential for funding. I’m not saying all schools act like this, but they weren’t acting in my best interest.
By third grade I was reading above my reading level and excelling at most of my subjects; this trend carried through all of my school years, save math where I had to work hard for B’s. Books were my escape when I was ostracized by my classmates. Books are still my dear friends.
Seventh grade presented another bad experience. I got my first D on a report card. This isn’t the dramatic response of a perfectionist. I got a D in keyboarding. I earned A’s on all my reports written for the class and F’s on every speed test. Yes, my left hand is more stubborn than me! To this day, I can only type 35 words per minute and that’s because I’ve had a lot of practice. The teacher wouldn’t budge when my parents tried to explain there was no way I’d pass a speed test and asked if maybe I could do extra work instead.
I’ve had three surgeries related to my CP, and likely will have more. I’ve tripped over my feet more times than I can count. I still haven’t come up a good response to why I’m limping. I don’t want to lie, but it’s an awkward moment when I tell people “Oh, I always do.” I have a fear of stairs because of all the times I’ve fallen down them or up them (yes, that is a thing). I hate the words “hurry up.” That one phrase can bring out the passive aggressive response of slowing down even further. I’m going as fast as I realistically can; keep it to yourself.
The doctors were right in one way; I’m not “normal.” My outlook on life is different. My pain level is always at a 4. Unfortunately, my muscles have started to fatigue more than what I have been used to in the past. At 28 I feel much older. I’m sliding toward needing a cane, but I’m still resisting (yes, I’m a little prideful). Now, I’m dealing with spasms in my left foot all the time and weirdly, my tongue has started spasming as well. It ranges from annoying to painful. I’m getting ready to establish care with a new doctor and hoping they can help with this new transition.
The doctors were wrong that I would never be independent. I live alone and I work full time. I’m almost done with my B.A. Sure, I’m tired and I love naps. I might have to have more surgeries in the future, but I won’t give up this part of my life. I take a sort of joy in proving the doctors wrong.
This fight to find normalcy is a carryover from my parents’ drive to raise me “normal.” I don’t blame them, as a matter of fact I appreciate what they tried to do, but it has caused some frustration now. I feel guilty when I have to tell people I can’t walk around anymore when we go on a trip. I feel guilty when I come home from work and take a two-hour nap. I feel guilty when I opt out of social functions because I know it’s going to be revolving around a physical activity. I’m supposed to be normal, right?
Well, I’ve decided I’m done feeling guilty. The guilt hurts worse than the spasms and I have to let it go. I’m tired of feeling like I’m a broken version of normal that I have to fix. I’m just me and sometimes I’m “normal” and sometimes I’m not. Maybe I am a different version of normal, but that’s OK.
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