Last spring, my life changed permanently.
I was in Florida for a volleyball tournament. Out of nowhere, I had a grand-mal seizure. After six minutes without consciousness, I came to. I was surrounded by my worried teammates, EMTs and coaches. After a long night of tests in the ER, I was told not to worry.
A couple weeks later, while in the living room with my family, it happened again. Back in the ER, the doctors diagnosed me with Juvenile Myoclonic Epilepsy (JME). After learning that I would have this for the rest of my life, I was so afraid. I worried I would die from a seizure, or have one at school. I didn’t know what my future would look like. My mental health suffered greatly.
Since then, we’ve been playing around with medications to find the perfect mix. I would try one med, have major side effects and then try something new, trying to stop my seizures and help me feel better. Getting on and off the medications was the worst part. It affected my mental and physical health. I missed a lot of school, and I still do. I had doctor’s appointments often, whether it was for an EEG or meeting with my neurologist, pediatrician, psychiatrists or for therapy. I even spent the night at the hospital for a test.
I relied heavily on the people around me, the staff at TuHS and my club volleyball team. On my worst days, volleyball gave me motivation to get out of bed. It’s also what has helped me gain back confidence that I could do “normal things.”
While this isn’t what I wanted for my life, it’s been interesting to learn how my brain works. I want to turn this negative into a positive by raising awareness about this misunderstood disease. March 26 is Purple Day, the International Day of Epilepsy Awareness, so it’s the perfect time to share what I have learned.
Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness or convulsions, associated with abnormal electrical activity in the brain, according to Oxford Languages. Being one in around 50 million people worldwide with a form of epilepsy, I think it’s important that others realize how to react if someone has a seizure in front of them. I think “Stay. Safe. Side.” (SSS), is the easiest way to remember.
Stay: STAY with the person and start to time how long the seizure lasts.
Safe: Keep the person SAFE.
Side: Turn the person on their SIDE at the start of the seizure, and keep them there until they are awake and alert.
Seizures look different for each person, and there are several different types. Some include absence seizures, tonic-clonic seizures or focal seizures. I personally had tonic-clonic seizures, absence seizures and myoclonic seizures. Tonic-clonic seizures or “Grand Mals” can cause loss of consciousness and violent muscle contractions. Absence seizures can cause rapid blinking or a few seconds of staring off into space. Often it just looks like someone is zoning out. Finally, myoclonic seizures are short random jerks or spasms throughout the body.
Often people with epilepsy or other seizure disorders will carry emergency medication. The medication is used if they have a seizure over five minutes. The medication I have is called Valtoco, which is a nasal spray.
Now, my life has started to look a little bit more “normal.” While I still have to worry about taking my medications on time and be careful about partying too hard in college, and can’t pilot a plane, I’m still me.