25 Mar Sage
“Seizure girl”, the name I was given in fifth grade. I never expected a name so horrifying from other students, but it happened. All because I was diagnosed with epilepsy. A disorder in which nerve cell activity in the brain is disturbed, causing seizures.
In fifth grade it was a tough time, because my family and I had no clue what was going on or what was wrong. It was quite the unexpected event when a few MRIs and CT Scans later – they discovered that I had a brain tumor. There were pros and cons to this discovery. It was nice to not keep questioning what was wrong with me, yet it was terrifying to learn that I would need to have a brain surgery. Along with that, the location of the tumor was not generous. To be specific it was a brain tumor in my left temporal lobe, which holds my reading skills, my language skills, and my memory. Yikes!
In the fall of my fifth grade year I had my first surgery. However, throughout my 5th and 6th grade years I was still having more seizures and the medications they prescribed were not fully effective. In 6th grade, I went through a 5-day testing program. During this time I was back at Cincinnati Children’s Hospital and the doctors were trying to get me to have a seizure while I had EEG’s glued to my head all week. So, they switched my medicines to throw me off, they made me stay up for over 24 hours straight, and they put crazy disco lights around me to try and make me dizzy. Overall-it failed, but 10 year old me thought it was like a fun party with the nurses who had to sit next to me 24/7.
In 2006, Cincinnati Children’s Hospital was the first pediatric hospital in the United States to purchase a MEG (magnetoencephalography) machine, and I was lucky enough be one of the first tested in the machine. This allowed my neurologist to see what parts of my brain are used when I am doing different activities. They wanted to know if more of my tumor could be removed. So while in the machine they had me reading, doing math problems, eating, having basic conversations, writing lists, counting, listening to music, etc. while I sat in this giant chair with a thing around my head. It was very interesting.
In 7th grade, after the MEG testing they had me go into a second surgery to put EEG’s directly on my brain and have another 5-day testing. Turns out when they put those directly on my brain they were able to turn parts of my brain off selectively to see what sections I needed. I’ll never forget, I was laying down while they held up flashcards of different objects. At one point they showed me a picture of an airplane, however I couldn’t say airplane. I just had a random sound come out of my mouth, and my speaking skills were completely gone. As a 12 year old, I got really nervous. However, they turned that back on and I was back to normal. After all the tests I had my third surgery and the neurologist was able to remove more of the tumor, but not all of it.
When going through these tough times, I faced a lot of insecurity. I was half bald being told “crazy hair day is every day” for me, and I was falling to the floor, dropping books and being called “seizure girl”. However, I realize today, that even though those were my weakest moments, they were also some of my strongest moments and it helped me discover what I wanted to do in my future. Today I stand and speak for kids and college students at Dance Marathons, while I am earning my Master’s degree in School Counseling. I want to help those students and others facing the same insecure feelings. I am so happy to continue this year sharing my story with students at Celina Intermediate School as I did in February, and share it with Project #EverybodyBeautiful now. Although I may still take 14 to 16 pills a day for my epilepsy, I can still have seizures. I have learned to accept my difference, and it just reminds me how important it is to take care of myself every day. I keep in mind negatively comparing myself, my appearance and my story to others doesn’t allow me to respect my individuality and uniqueness.
– Sage Schmitmeyer
Speaking at University of Cincinnati Dance Marathon
5th grade surgery
Picture of MEG machine that I was tested in
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