By Kate Dekoski
Congratulations on graduating from high school and getting accepted into (fill in the blank) College/University! Going to college as an able bodied young adult is hard enough but when you are a spoonie it can be harder. Especially if you go to a college away from home, when you go away you also have to take a bigger role in managing your own healthcare needs.
I graduated from high school in 2008 and because I felt like something might go wrong with my health, plus I wasn’t ready to move away, I went to a school close to home. I lived with my aunt and boy am I glad I made the decision to stay close to home! School started at the end of August, I had been having headaches for a while and through September. At first I thought it was just stress, finally in October I broke down and admitted I might need to see my neurosurgeon. One bright sunny Friday morning I went into my neurosurgeons office and was told I would have to have surgery because my shunt was plugged. The next day I ended up having emergency surgery for my plugged shunt, I woke up from that paralyzed on my left side. That’s why I’m glad I stayed close to home! In 2011 after recovering more fully and getting my basics done, I moved away to school.
Staying close to home has its pros and cons:
Close to family if something goes wrong
You know the area
Friends are close by
Cheaper (especially for basic classes)
Close to family and they know everything you do, especially if you want to do things without their judgement.
Parents are less likely to see you as an adult
Don’t learn necessary life skills because living with parents
Going off to school
Different experiences on campus
Meeting new and interesting people
When I went off to school, I introduced myself to the people in disability services and made sure residences life/student services knew about my health conditions
Learning life skills
Far away from medical professionals who know your case
$$$ (more expensive)
I made sure I knew where to find important medical information, just in case something happened to me and I could not respond. I also made sure to meet with all my professors (which is totally up to you whether you do or not). I met with my professors a) because of my accommodations and b) just because I had learned at the first institution that it is easier to get help if the professors know ahead of time what could happen if it does happen and you need help.
Now the lists above could surely be longer, but these are the things I found important for me. These were the major factors I see now in my decision making while looking at schools. As you can see I did both I stayed close to home then I went a few hours away. I enjoyed both, but I really grew the most going to University away from home. I got to take charge of my healthcare without other people butting in. I enjoyed the freedom to be the real me, the chronically fabulous me!
Kate Dekoski, Spoonies for Life Contributor and Support Group Admin.