by Scott
As a freshman at Purdue University, I noticed I was slowly developing balance problems. At first, my student health center physician thought it was just stress. Eventually my family got concerned and arranged for a neurologist to see me in the emergency room of a hospital near my home in Indianapolis. After a thorough examination, I was given the first of over 30 MRIs. The scan revealed two tumors, one on the cerebellum and one in the brainstem. The tumors, although non-cancerous, were slowly getting bigger, causing pressure on my brain.
I had surgery on the cerebellar tumor, with the surgeon removing 100 percent of the tumor. My physician considered surgery on the brainstem tumor to be too risky, but I sought a second opinion by a surgeon in New York City, and eventually had approximately 70% of that tumor removed as well.
After my hospital stay for the brainstem surgery, I was able to return to Indianapolis for rehabilitation, which included relearning how to walk again and how to use the right side of my body. I guess I knew I had to keep pushing through my treatments and long rehabilitation if I wanted to get somewhere in life. I just had to recover from the surgery or radiation or whatever it was; failure was not an option. I had seen two of my siblings graduate from college, and I felt that I could or should put myself at the same level and match their accomplishments.
I returned to Purdue University in the spring of 1997, but in 1999 a scan showed further growth of the brainstem tumor. Radiation was not effective, so within a few months I had my third brain surgery. My surgeon was able to successfully remove 100 percent of the remaining tumor this time. I again went through months of rehabilitation, but unfortunately my sense of balance never recovered. I also lost the use of my right side and the ability to walk. Now I use my manual wheelchair or walker around my home, and if I’m going to go somewhere, I’ll either go in my manual wheelchair or take my motorized wheelchair or scooter.
I still can move everything, but I’m less coordinated on my right side, and I have reduced sensation—if you tap me on my right shoulder, I may not feel it, although if you stick me with a pin I sure will. Because of this, I have to move very carefully. I find that I use a lot more visual cues now to get around, since I don’t get as many sensory clues to what’s going on.
I haven’t let these challenges stop me, though. I play power soccer in my motorized wheelchair. To protect my right arm while I play power soccer, for example, I may put it so that it’s touching my left leg, so I know where it is—if it wound up dangling over the side of my chair it could get crushed during play.
It was difficult coping with everything while I was in school, but I didn’t want to give up. I changed majors several times but kept returning to school in between treatments. I graduated Purdue with a bachelor’s degree in Organizational Leadership and Supervision in December 2004. It took me nine years. Today I’m 33 years old and living with my parents, although I hope to move out as soon as I find a job. I want to end up working in Indianapolis or in the Louisville, Kentucky area.
No matter what, I just pushed on. I just knew I had to get through the treatments and rehab if I wanted to make something of myself. I had to do it. When I was in the hospital right after my diagnosis, one of my friends’ dads came in, and he had watched my friend and me on the basketball team in grade school and in Boy Scouts. He said “You know, I’m going to give you the same advice that a basketball coach would tell his players: never give up. Never, ever give up.” And that’s what I’ve listened to and remembered.
