24 Years Later

At age nine, I was diagnosed with a ganglioglioma in my left frontal lobe. It started with small seizures I’d have in private. I did my best to hide it. Whether going to my room during dinner time or the bathroom during school, I could feel them coming, and I’d excuse myself. Finally, I had two grand mal seizures, first in front of my entire school in the 4th-grade cafeteria and the second, on the same day, headed into my mom’s work Christmas party.

That same day, I was diagnosed with my tumor. A lot of emotions were running through me, and I was only nine, so my grasp of what was actually happening was limited. I do remember asking, “Am I going to die?”

That answer, thankfully, was no. However, over the next eight months, I had two brain surgeries. After the second one, I was paralyzed on my entire right side. I didn’t know that was going to be a possibility and only found out when I woke up from the anesthesia. They left 5% of the tumor remaining as it was too close to the part of my brain that controls my motor functions (hence the partial paralysis). If they removed the full lesion, I was at risk of being paralyzed from the neck down for the rest of my life.

They wanted to do a third surgery — an awake surgery. That’s when they put you to sleep, cut your head open, wake you up, operate, then close you back up. I said no. 

They also offered radiation. Also no. I was scared. I wanted it all just to stop. I was told I should be OK to live a normal life, but I will need to come back for MRIs to continue monitoring it to ensure it doesn’t grow back.

My paralysis occurred the summer between 4th and 5th grade, right before my 10th birthday. I had to re-learn how to walk, write, pretty much everything. I went from being right-handed to left-handed. I spent some time in a wheelchair. From there, I spent the next four years in physical and occupational therapy, attempting to regain as much strength as possible. I was never promised I’d regain my full strength, but I was determined to get as much back as possible.

Twenty-four years go by, and I try to live as normally as possible. I walk with a small limp, and my right arm is relatively weak, and I have very little dexterity in my fingers. I do mostly everything with my left hand, mostly using my right hand for support and balance when able. I got good at hiding it. Most people don’t even notice unless I bring it up, or they are just being kind so as not to embarrass the guy with the weird arm.

I’m 33 now and finally accepting what happened to me all those years ago. What I didn’t realize is how my tumor affected my personality, behavior, and emotions. When I was younger, everyone only focused on my physical paralysis, but no one paid attention to the emotional and mental effects I experienced. I currently suffer from anxiety and depression. 

I’m recently learning a lot of the actions I’ve done in the past that were questionable were because my brain damage impaired my judgment. I lost a lot of friends and made a lot of enemies. I’ve had outbursts. I’ve been emotional. And I’ve been going through it all alone.

I’m in therapy now. In facing my past and learning about it, I have been able to start finding peace within myself. It’s one day at a time and certainly a struggle, but there is light at the end of the tunnel.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.