Halloween Blackout

halloween Blackout

by Ty Riley

Art By Lauren Mallett

I was told repeatedly… “You’ll grow out of it.” 

The human brain is the most complex organ in the human body for scientists to understand and, in turn, treat. While there are over 600 neurological diseases, I particularly want to dive into the complexity of epilepsy. I had my first seizure at nine years old, and growing up I had repeated testing until I was finally "roughly" diagnosed with Nocturnal Epilepsy. My neurologist said I had to accept that every time I went to bed… “You may not wake up.” 

A “seizure” is a burst of uncontrolled electrical activity between neurons, or “nerve cells” that causes temporary differences in movement, behavior, sensation, and awareness. Every person who has epilepsy has different seizures, symptoms, and triggers. For example, many people ask me if I have seizures due to fast-blinking lights, which is called Photosensitive Epilepsy. Only 5 percent of epileptic people are triggered by flashing lights. It is common in people under 20 years old, and almost every epileptic person is tested with flashing lights at least at one point in their lives. I do not have Photosensitive Epilepsy, but the sheer amount of people who assume that it’s the only type of epilepsy proves how little information and awareness there is. At age twelve, I had my first tonic-clonic seizure (formerly called grand mal seizures), which caused loss of consciousness and violent convulsions. Every time a seizure occurs, a certain number of brain cells die. I began having less balance, less hand-eye coordination, and slower reading speed. “Brain cells do not regenerate; they are gone.”

On Halloween 2023, my long-distance boyfriend, Jack, visited me at college, and we went to an Italian restaurant. My condition involves taking a large dosage of medication at a specific time. I had been on the same medication since I was diagnosed, and my dosage increased as I grew. When Jack and I finished, I remembered that I had forgotten my medication. I raced home—I was four hours late. I went to sleep and anxiously waited to see if I would wake up. 

My eyes open, and I’m hungover. On my way to the bathroom, I started having a seizure. I am aware of what's going on for about 20 minutes. Jack comes and finds me banging my head against the bottom of the toilet and kicking the door with all my might. I was choking on my tongue, and while helping me, I bit Jack’s thumb incredibly hard. This isn’t his first rodeo. My suitemates run to my side and call the RA. That is where my memory stops. 

I had a 12-hour tonic-clonic seizure. The RA had not arrived, and I was unresponsive. My roommate called 911. I was upset to hear that an Emerson staff member did not show up until I was being taken to the hospital. Emerson immediately kicked Jack to the street and insisted on taking photos of all the belongings he took out of my room in case he stole anything. After arguing with my suitemates, Emerson agreed to have one of them register Jack as a guest and allowed him to stay until I was released. Did my own college even care about my well-being, or am I just a check to them?

In the Tufts ER, after 10 hours of constant seizing, my neurologist decided to put me into an induced coma to calm my brain down. I was put through multiple full-body scans, a spinal tap, and a 72-hour EEG. I woke up three days later, my feeding and breathing tubes were removed, and I was on heavy painkillers. Due to being in and out of the hospital my whole childhood, I have an intense phobia of hospitals. As soon as I woke up, I insisted on being taken home and began ripping out my IVs and sensors on my head. At one point, I attempted a poorly planned escape. I made it about ten feet before I was put in restraints. My parents could not travel to Boston, so Jack was named my healthcare proxy. Looking back, I am lucky I ended up at Tufts that day. I was finally looked at by a world-class neurologist who gave me a diagnosis, new medication, and identified my primary triggers. My triggers are menstruation, peanuts, tree nuts, fish, alcohol, and lack of taking care of myself, such as lack of sleep, medication, and mental health. I could not be more grateful for my suitemates, boyfriend, and the Tufts doctors who called me a miracle. I shouldn’t have woken up without severe brain damage. 

Epilepsy is a hidden disability. You won’t be able to look at someone and know they struggle. When I went away to college, I faced the reality that many people do not want to deal with others' disabilities and look down on disabled people. Going random on a roommate was a precarious move on my part because I was introducing myself and putting my life in their hands. I wanted to study abroad in my sophomore year, but how could I find a roommate? Could I even travel alone? I have been affected professionally after having a seizure at work; my managers were concerned but frustrated. I have been told that I am a burden and others don’t want to live with me. After a few missteps, I found roommates who genuinely cared about my well-being. A couple of days ago, I had a small seizure in the 2 Boylston Alley while sitting at a table. The fear that, at any moment, they can hit the ground is terrifying to anyone with epilepsy. The amount of pain disabled people are in when they don’t feel “normal” or good enough or when people talk behind their backs. I have been told my whole life that I am broken. It took me 20 years to say this: I’m not broken, and I'm proud to be a part of the epileptic community.