Many people have asked me throughout my life, “What is it like to live with Cerebral Palsy?” On a good day, I might say, “Oh, it’s really not much different than the lives of the non-disabled.” or “It’s just a little something extra to deal with everyday.”
On a bad day, I might say, “It’s more like being twisted up in the shape of a pretzel with my legs as stiff as boards and praying for high doses of morphine to take the pain of my severe spasticity away.”
Although there are times when I feel like a badly twisted knot, especially after a long day. Getting the car is nightmare. It’s like watching a bad Kung Fu movie. One leg has a stiff stance while the other kind of kicks wildly, until I get some control of it. My legs are constantly rigid. If I move the wrong way I hear snap, crackle pop like the rice crispy cereal treat!
I can’t complain too much. I h ave h
ad a wonderfully productive life! I’ve graduated high school and college. I am now like everyone else looking for a job.
Job hunting has not been an easy task. Friends and advisors have told me that I don’t have any work experience so therefore, I can’t get any decent paying jobs. My question is how can I get experience if no one will hire me?
I’ve considered going back to school for further education. However, then I will be considered over qualified and still without experience. It’s a no win situation. Is a job really that impossible to find?
Of course to make matters more complicated, it must be part time and close to my home because I can’t afford a full time attendant or the costs of transportation.
I am lucky that my dad has offered to drive me back and forth to work. Thankfully, I won’t have to use my entire salary paying for these costs.
I am independent as independent as a person can be in my situation, despite needing the help of my very patient family members for aspects of personal care.
My family has to help me with things like showering, dressing, cooking, and laundry as well as being my chauffer and moral support team.
This isn’t easy since my family members have to attend to their own lives as well as my own. I wonder when they are able to find time for themselves.
Then, there are days when everything goes wrong. I put my shirt on backwards or my muscles become so tense that my poor parents have to drag me out of bed! I hate getting up in the morning!
I might consider going to see a friend but then I realize that the place isn’t handicapped accessible! Those are the days, where you just want to scream ARRGH! Those days are sometimes worse than my worst physical therapy session!
What I’ve learned is that on those bad days, just like people without a disability I have the right to grit my teeth and stamp my feet or in my case ease into my wheelchair and keep rolling on through life hoping tomorrow will be a better day but not exactly counting on it!
Victoria Page is a guest columnist for Audacity. Send your comments to firstname.lastname@example.org or you can share your CP story with Audacity Magazine. Send it to email@example.com in MS Word. You can join Vicky at the Online Forum and discuss this topic and others.