My life so far . . .
I have a minor case of Cerebral Palsy and have spent my life with pain, discomfort, and stiffness. Being fully ambulatory though, I never felt that I was, by definition, “disabled”. I didn’t require walking aides or support and always took great pride in the fact that even though I walked “funny”, I walked with purpose and confidence.
That changed about one year ago. I fell backwards for no reason whatsoever, landing HARD on my bottom. When I woke up the morning after I tried to convince myself that I could carry on like any other day. My body soon told me otherwise when I leaned forward to put my shoes on. That movement triggered intense pain so my partner took me to the doctors office. After two hours I suggested he wait at home and I would just text him when I was done.
When I was called by the nurse I stood up and started to painfully walk across the room. I was struggling by the time I reached her and she caught me in her arms. My legs had given out on me and I began to cry from the pain and embarrassment. All of the eyes in the room were on me and I was devastated to have been seen in that moment of weakness.
The Dr. ordered x-rays me and sent me home with Naproxen and T3s. I was advised a few days later that the x-rays were clear and to take it easy, it would get better.
Our (lacking) system
I have learned that Cerebral Palsy and its accompanying glitches are somewhat mysterious to Drs. It is classified as a children’s disease but the Cerebral Palsy doesn’t leave a persons’ body when they become adults.
I had to see a Paediatric Orthopaedic Surgeon each year growing up. I was thoroughly examined on every visit and he performed several surgeries. At the ripe old age of 16 I was no longer classified as a paediatric case and the Dr. that had managed my care from the age of two years old could no longer see me.
Young adults transitioning to adulthood are provided no guidance as to how the system works. This is an entirely reasonable as a coming of age experience. But not when putting this burden on children with neurological and/or physical conditions. These “adults” have had their condition carefully monitored and managed by a team of specialists and advocates and then in the blink of an eye they are left to navigate a system that is riddled with obstacles and unknowns.
My life now
I now find myself in constant pain. My mobility is at perhaps 30% of where it was just one year ago. I no longer pack up my car on the weekend and drive 6 hours to the city to see my favorite band. I no longer take my two unruly but super lovable big dogs into the woods for their “big day of fun”. My confidence is gone. My “I can do anything” attitude is slipping away. Waking up each day to the pain of just getting out of bed and then having to hang onto walls or ledges to move about in the morning has brought a sense of dread for tomorrows rather than excitement.