by Victoriahope McAuliffe
When I was 17 I made the decision to go ahead with a surgery that would hopefully control what I had lived with since I was four years old. I suffered from intractable Epilepsy, and typically had 200 seizures a day. I would fall down on the floor, crawl, scream, and end up injuring myself in all sorts of ways. I remember constantly having to bandage my knees because they were always cut up and bloodied. Most kids have scraped knees from sports or running around outside, mine were from constant seizures.
This surgery, a right frontal partial lobectomy, would hopefully remove the source of my seizures and change my life in unimaginable ways. Little did I know how many ways my life would be changed.
My surgery took place during my senior year of high school, in December. I had left school in October because my seizure activity had become so frequent that I was missing classes, so I was isolated for most of the time leading up to the operation. I remember being so excited that my seizures would stop, that I didn’t have time to think about being afraid. How could I be afraid? My whole life was going to be different, this was going to change EVERYTHING! As the day approached I began to feel scared and nervous as the enormity of what I would soon undergo hit me. I admitted to one of my friends I was scared, and he just said, “I know you are. You have been. You just didn’t know it.”
My surgery went perfectly, but I was exhausted and overwhelmed in the days following. I hadn’t realized just how much help and support I would need in the days and weeks that followed. I had to learn to walk again. I couldn’t shower alone for two weeks, and I couldn’t walk by myself for three weeks. It was hard for me to accept the help of others, because I had no idea I was going to need it. In essence, while the operation was successful and ended the seizures, it also left me with a brain injury, which caused an entirely new set of problems.
By some miracle, I was able to graduate with the 2010 Senior class at Doherty High School in Worcester, Massachusetts, and that fall I started school at Quinsigamond Community College. I soon found that I was tired all the time, and I needed to take naps everyday when I got home from school. The hardest thing for me was that I now struggled to read and comprehend information. I had always been a strong reader, and my slowed reading and processing speeds made reading a monumental undertaking. Still, I was able to finish my Associates Degree in Early Childhood Education in May of 2014, and I transferred to Worcester State University the following September.
Transitioning to Worcester State from QCC as a student with a brain injury was challenging, and disheartening at first. I had to navigate a new campus, meet new friends, understand how the dynamics of the school worked, and of course become familiar with the Disability Services Office. Adjusting to a new school is stressful for any student. Imagine trying to do it without the part of your brain that controls emotion regulation, impulse control, inhibition, organization, executive functioning, and rational thought. Everyday difficulties were magnified into huge obstacles.
It didn’t help when the Disability Services office gave me a handbook titled, Transitioning From High School to College. Evidently my community college didn’t count. I stayed away from the office for two semesters after that, and when I had to return to use my accommodations for a mathematics course, I had a totally different experience and found the director amazingly helpful.
I get hurt and offended when people try to “help” me by dumbing things down, by diluting information so that I can absorb it. I am an intelligent individual, and I have met many people with cognitive and processing disabilities who have intelligence levels that far exceed those of the people who often try to help us.
What I need as someone with a brain injury and processing impairment is to be listened to. I want to be respected and heard as an individual with hopes, dreams, and goals. I am not just a statistic you write in your books to say that you graduated so many students with learning differences- I am a person and some days I struggle.
Some daysI struggle. I feel such extreme fatigue and exhaustion, I have to fight with myself just to get out of bed. Yet everyday I get up, and I show up, because I need to be there for myself. We live in a world where people like me can be overlooked, and it’s easier to do that when you seem healthy on the outside. That is the trouble with invisible illnesses– others cannot see them, but those who suffer from them feel their strength at full force. It is isolating, and often a heavy burden to carry.
My brain injury is a healing wound you cannot see. I am learning to live with that reality, this new me. Despite these challenges, I’ve managed to keep my GPA above a 3.0, and I’ve started working part time. Healing takes time, and someday I will reach the place where I want to be. And until then, I’ll keep my sights on graduating next May–which is not bad for a girl they said would never graduate high school.
Victoriahope McAuliffe is a student at Worcester State University, Worcester, Massachusetts. She enjoys singing, hiking, yoga, and writing, and her goal in life is to inspire others to keep fighting. She blogs at www.chronicbrainborrower.blogspot.com and can also be reached at instagram@wildheartedwanderer.