Epilepsy Star: Leigh Schommer
Leigh Schommer is this issue’s shining epilepsy star for all she does and has done to advance awareness and knowledge about epilepsy in general and more specifically in Mexico where epilepsy is still very much in the shadows. Her fight against epilepsy is very personal because she herself has epilepsy. She has dedicated her young life to helping others with epilepsy in many ways and has tons of plans for the future.
How has epilepsy touched your life?
I have had epilepsy since I was 4 years old. When I was younger, it never really bothered me because I would only have one or two grand mal seizures every year or so. But, as I got older, I began having nocturnal complex partial seizures, resulting in severe memory loss. I would wake up not knowing who I was, who my family members were, where I was, what I was studying, etc. These types of seizures first began during my senior year in high school. At the time, I realized I could do one of two things. I could either give up completely and stop having goals, or I could do everything I could to achieve my goals. I decided to take option two, and ended up finishing high school and attending college at Seattle University. Although I was doing pretty well through recording lectures and receiving extended time for tests, my seizures changed once again in 2011. I then began having 2-3 seizures each day. That is when my neurologist suggested brain surgery. Although I was terrified, I decided to follow through with the surgery after graduating from college. Since then, I only have about one or two seizures each month and do what I can to support others with epilepsy.
Tell us about your experience in Mexico: what did you realize when you got there and what motivated you to start the epilepsy awareness campaign that you started?
Because of my constant seizures in college, I was never able to study abroad. Then, in March 2013, I had the opportunity to travel to Puebla, Mexico, with the intention of staying for two months. However, I immediately developed a wonderful connection with the culture and wanted to stay for a longer period of time. But I realized that if I stayed for the summer, I wouldn’t have been able to attend the Run/Walk for Epilepsy that I participate in every year in Portland, OR. That’s when I decided to create the same event in Puebla.
I soon became aware of the fact that there is a large fear of discrimination amongst people with epilepsy there. As a result, patients, as well as their families, do everything they can so that no one knows about their medical condition. When I heard this, I immediately felt the need to reach out and do what I could to let those people know that they are not alone, and that they do not have to hide who they are.
Tell us about all the projects that started before you moved back to the US and what has continued after you left?
I stayed in Mexico for a year after forming Grupo de Autoayuda Epilepsia Puebla. Although the group in Puebla is the most active, the group has expanded to different states of Mexico. In Puebla, I met a neurologist who agreed to assist me with the group. In June 2013, we began having monthly meetings, which still continue today, that include presentations on different themes related to epilepsy. We also have had two conferences, one of which was regional, and had 5 events in downtown Puebla where we handed out brochures on epilepsy. I was also able to give around 60 presentations in different high schools and universities, and was able to train some students who have continued to do that since I left. I also spoke on different radio shows and television stations regarding our group. I stay in contact with everyone through our Facebook page where I upload new articles and group information every day.
How are you now involved in the epilepsy community in the US?
Since returning to the U.S. in May 2014, I’ve continued to stay involved in the epilepsy community. In June, I volunteered at the Run/Walk for Epilepsy in Portland, then attended a Young Adult’s Epilepsy Summit in Washington, DC in July. That Summit was a gathering of 20 young adults from the U.S., Canada, Puerto Rico, and Jamaica, with the intention of creating an epilepsy project that we can all participate in throughout this ongoing year. I also attended a conference in Seattle in early November, and, in honor of Epilepsy Awareness Month, have been distributing purple bracelets and raising funds that I will donate in honor of epilepsy awareness.
What are you doing now with your life and what are your future goals?
I am currently in graduate school at Portland State University where I will obtain a Masters in Social Work. I am returning to Mexico in mid-December for a few weeks, just to check in on the group and see how I can help. In the future, my goal is to have a career in which I can continue educating the public on this topic, as well as assisting those with epilepsy, either through working in a hospital or with an organization. I have very much enjoyed being able to work with the Latin American population and would love to continue that as well. We will just have to wait and see what happens.
