How to expect the unexpected

Leland McConnell, Website Production Team

It was the summer of 2018.

I didn’t know that the warm, calm morning in July, would set off multiple events that would cause my disorder to get out of control.

I was out to go on a group bike ride with my father. It was planned to be 20 miles. But we didn’t ride. I passed out five minutes before we left and started seizing violently.

My dad picked me up and carried me to the car, buckled me up and we left.

My earliest seizure happened when my mother took me shopping at Target when I was five years old. Everything was going fine, we got into the parking lot to leave, but walking out to the car, my first seizure occurred.

My mother showed signs of a seizure disorder when she was little. No big deal, but she had to take meds for it until the seizures stopped in elementary school, when she grew out of it.

For me, it was different. In the parking lot of the Target, my mother held me as I seized violently on the cold, hard, rough asphalt. People walked past, yelling at my mother to take me to a hospital.

She didn’t. She knew how to handle these events. After all, she has been a nurse for the past 18 years. She waited until I stopped seizing, put me in the car and took me home.

With me on the couch sleeping, she rang up a neurologist she knew from work.

I was scheduled for an EEG the following week. This is a test that records electronic signals in the brain through the use of electrodes and is connected to a computer. These can take anywhere from one to six hours. This one was six.

I was put on medication, and I was fine. Since then, my disorder was somewhat controlled. The occasional seizure every now and again would happen, but I would just be put on a higher dose of my meds.

But now, events have slowly been occurring closer and closer together.

Nov. 29, 2017. Wednesday morning, in the bathroom getting ready for school. I was found on my stomach on the floor over my brother’s dirty laundry. I had a small amount of drool/ mucus on my brother’s pants.

July 2018. The aforementioned bike riding incident.

Dec. 17, 2018, Monday morning, I’m eating breakfast on top of the counter and about to leave for school. I was found at the ground with blood coming out of my mouth and seizing, with my father next to me on the ground.

Jan. 14, 2019. Monday morning, eating breakfast, about to leave for school. I was found by my mother on the floor with a scraped up temple and a bruise from my right temple down to my lower eye.

March 29, 2019. Friday morning of spring break. Went to the store to get some things for lunch. Fell and started seizing in the dairy aisle.

The last one was extremely traumatic. It was the first time I was by myself during a seizure. General confusion, then sudden darkness consumed me.

I woke up with a manager to my right and four paramedics around me, taking my vitals.

A series of appointments and tests, all to tell me nothing about how to solve this, well, torture. I miss copious amounts of school and activities. I suffer from constant headaches. And when will I outgrow this? All the doctor has said is “Well, if you try a different diet, more exercise, less screen time, MAYBE you could outgrow your seizures.”

This doesn’t make me angry. If anything, it makes me depressed. Again, this is a disease I have due to genetics, which my mother had outgrown when she was half of my age.

I live in constant fear that I am gonna slip up, forget to take my meds and pass out when my parents are not around. My parents live in constant fear that I will have an event while I am on my bike, and possibly get hit by a car.

With a mix of my diabetes, seizures and my busy schedule, I am never sure when I may pass out, or have to go to the hospital, or have to explain to people that these things happen.

I don’t want this life. I don’t want to have the possibility of death every time. I don’t want to have multiple seizures a day, where I stare off into space for a couple seconds, not moving or speaking, and unaware that it is happening. 12 years and counting with all of my disorders and diseases.

I am sick of it.