Aging with Cerebral Palsy has not been closely studied since medical advances preserving lives of babies with disabilities did not occur until the 1960's. Think about it; how many adults with cerebral palsy do you see in society? My desire is to share my experiences with the disability to help others know what could happen. Of course, you can't determine the future with one person's experience, but you can use their experiences as a guide of possibilities. Here are some issues I must consider for something as mundanely simple as going to work:
• Limited fine motor skills makes things like buttoning, using a curling iron, and preparing breakfast (including coffee) much more time consuming.
• Although I rise a minimum of 2 hours before I need to leave for work, I still run around the house 10 minutes after departure time; trying to gather things and thoughts. There is always one more ‘quick’ thing to read, do, write, clean, eat, etc. distracting me from my primary task. I have focus, just not on the right things.
• Starting my day studying scripture is so good it’s bad. I enjoy having quiet time, communing with my Heavenly Father so immensely that it is torture for me to pull myself away from Him, to leave my serene home, especially to go to a job I do not enjoy.
• Knowing I have to leave my cocoon to enter the big, bad world should get easier to endure, but it doesn’t. I have mini-anxiety attacks and Crohn’s attacks, consumed with intense dread and despair even before I walk out the door! This happens every morning of the work-week.
• By the time I come home after working all day, I am so emotionally drained that I am unable to proactively search for a way out. During the weekend, I try not to think of my job, which leads me away from taking actions needed to get out of this situation.
• Finally, I don’t have the stamina that I had 20 years ago. And my mental/emotional state plays a pivotal part in my energy level.
While I am not ready to crawl in my bed and wait to die, I do need to face reality. As my doctor pointed out today, I need to get out of this depressing job because it is affecting my health… all of it.