People often ask me “Well what is it like living life with CP?” I struggle with this question because I never know if they want the technical-medical-textbook definition of what cerebral palsy actually is or if they want to know what a day in my life is really like?
Well I’m here to tell you about my roller coaster life with CP. You see, a lot of people see me when I am spinning down the street attempting to catch a bus or the O-train off campus. I’m out just to do normal things, like go grocery shopping at South Keys or simply grabbing a coffee at Starbucks. Most people who do not know me or know my story think that I am a child who is in need of help. All they see is my power chair. They think I must be miserable because of the fact that I am in a chair and have a physical disability. I cannot count how many times I have been approached by strangers who think that because I’m in a chair that I am a child in need of help or they pity me because of my disability.
Let’s be real, life with cerebral palsy is not sunshine, roses, lollipops, and a cakewalk. Am I miserable because of my disability? No. Life with CP is accepting that my life will never be easy. It’s learning to do most things by myself because I was raised by a tough loving mother who taught me that if I truly wanted to be independent in life I couldn’t just wait for someone to pick me up off the floor every time I fell. Because let’s face it, when you have CP gravity is never on your side. It is worrying whether or not you will make it to class on time because your attendant is late due to the strike on campus.
It’s having to call an attendant because you’ve gotten sick all over the kitchen due to a migraine that was the result of six concussions that your CP is indirectly responsible for.
It’s having to ask your friends the “is this place accessible?” question every time you make plans.
It’s having to fight for every single basic right that an able-bodied person takes for granted.
It’s wanting to stay in bed because you’re too tired to fight every day and deal with ignorant people.
It’s having your own pity party some days, and crying yourself to sleep other days because you are so darn frustrated at the way society treats people with disabilities.
Living with CP is also pretty darn amazing! It’s getting to travel because of para swimming.
It’s being able to change a fire evacuation policy in Nova Scotia for students with disabilities.
It’s being able to speak to the Nova Scotia legislature about the need for pediatric rehab in Nova Scotia.
It’s being able to travel all around Europe for the special type of therapy you did when you were younger.
It’s being able to go on vacation with your family and see the beauty of the world on the shoulders of your six-foot tall gentle-giant of an older brother.
It’s having fun with your university friends, giving them rides on the back of your power chair, and laughing your heads off.
It’s playing a 24/7 trust fall game of please don’t drop me. You know you’ll be screwed if they drop you because you can’t get up by yourself without a walker.
It’s bad disability jokes and 23 years of proving people wrong!
Moral of the story: life with CP is a beautifully complicated gong-show-roller-coaster that is not boring or linear or miserable!
Stay tuned for another upcoming episode of “Sonja’s Stories”!