On Purple Day, we would like to share Myrna’s story of living with epilepsy. Myrna was diagnosed four months ago after having been seizure-free for 20 years.

She shares the challenges she has faced and how she is determined not to let her epilepsy stop her from doing what she wants to do.

“It was a huge blow when I had a seizure in September of 2023. I had just finished a series of concerts about my musical career that included a segment on how I had been seizure-free for 20 years with no medication.

I was so proud of myself for having beaten the seizures using diet, exercise, and music therapy. A day later I had a seizure.

I have tonic-clonic seizures. Each one has been different. The first happened on my 16th birthday in front of all of my friends. They were all freaked out by seeing it and I basically, became a social pariah. My heart stopped in the ambulance and I almost died.

I ended up going to college early to escape the stares and the whispers behind my back. I also had to give up my driver’s licence that I had just received. The second one happened on my first day of graduate school. They gave me phenobarbital and I had a really hard time with it.

One of my professors used that weakness to sexually harass me for the entire year. I ended up dropping out of school. I moved back home and tried a different medication. Several years later I got off the medication and used acupuncture to keep from having seizures.

It worked for a while but then I had a seizure in the shower and injured my nose. I’m lucky I didn’t die.

I have been dealing with health issues since I had my diagnosis. I am trying to take care of my children and my aging father while running a non-profit organisation and working two other jobs to make ends meet.

Epilepsy more than seizures

I have had anxiety, depression, weakness in my limbs, brain fog, and extreme fatigue since my diagnosis. I also have many hospital bills because the healthcare system in the United States is terrible. Also, I currently don’t have a neurologist because I have no confidence in the doctors I have met.

I have never and will never allow epilepsy to stop me from doing what I want to do. I continue performing concerts and I still exercise in the pool, as safely as I can using a flotation device.

Raising awareness about epilepsy

There is a stigma surrounding epilepsy, but I try every day to talk about with strangers. I share my experience with my audiences at every performance.

I am doing as much as I can to raise awareness about epilepsy and to change the conversation from being told how to manage epilepsy to having people ask me what my needs are.

It is so important to raise awareness about epilepsy. This season my ensemble, the South Florida Chamber Ensemble, is focusing on mental and physical health. We are constantly talking about the effects of physical health on mental health.

The only way I have been able to get through this is through my friendships with other people with epilepsy.

I have met and regularly correspond with others with epilepsy on social media. I am creating a support system online of others who are going through the same issues that I am. It is that support system that has sustained me through these last two seizures.

I believe that epilepsy is a sign of an advanced mind. Our brains work overtime which is what causes the seizures. Each one of us is special and capable of amazing things.”

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.