By Kate Dekoski
My whole life I’ve been a Spoonie but It wasn’t until I was 13 that I really started to deal with the effects of my chronic congenital disorders. You see I was born with Dandy-Walker Syndrome and hydrocephalus, I had my first brain surgery at 4 months of age. Then I had my first shunt revision and shunt infection when I was 13. After that my life started to become more and more Spoonie. I was excused from gym class, I slept more, while I was in active in two student organizations and constantly going on trips, I worked my butt off to be able to get a good GPA.
College was fun too I was busy with classes, more surgery, and extracurricular and lest we forget the brain surgeries. I had a few the first couple of years at community college. After all that happened, I took some time off to deal with my health. After two semesters off I transferred to Madonna University. The first thing I did there was to meet with the Office of Disability Resources or ODR. They were able to help me get a note taker because when I’m in need of surgery my hand writing gets so bad I can’t read my own writing, they also got me extra time on tests if I needed it and we worked out a plan on how to inform my professors when I would be out for an extended period having surgery or what not.
Life at Madonna
I was at Madonna living on campus for 3.5 years dealing with my health issues on my own. It was a bit scary especially when I was trying to not be seen as weak or ill. I don’t know how I did it but most people except for my roommates and the nursing instructors are the only ones who ever really noticed that something was up, that is until I got really bad and ended up being taken by my roommates to the hospital my neurosurgeon worked out of. I thought I might die so much pain the 3 hour drive nearly killed me, I wanted to stop at a hospital for pain relief and hopefully get transferred to my surgeon. No luck. I had the surgery and life went on.
I dealt with struggles with roommates when I got back to school but that’s to be expected, my health conditions are stressful on the people around me. I find it stressful. Going to school, being a Spoonie, not being able to drive because of my Spoonie status; it’s like that for a lot of young Spoonies it’s a struggle to survive school, build a family, keep friends, and have a job not to mention all the work we put into managing our health!
There are days I look around me and say how did I ever get this far, living on my own in a town at least an hour away from my family? It amazes me every day the things I manage to do despite my health challenges and trying to figure out what this symptom or that could mean; having 8 different doctors like I do and coordinating the appointments is not for the faint of heart.