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In the lead up to the 11th Annual National Walk for Epilepsy, Kerri C. of McHenry, Maryland, shares her epilepsy story. Learn about Kerri’s journey and why the #EpilepsyWalk is important to her.

Want to support Kerri and other people living with epilepsy? Donate to her fundraising page, support another walker, volunteer, or register now to join us on the Washington Monument Grounds on March 25.

Describe your epilepsy journey. How has epilepsy affected you physically, mentally, and personally?

My epilepsy is the result of head trauma. I had been in a car accident four months prior to my high school graduation and my head shattered the windshield.

I have refractory epilepsy. This means that my seizures are still not controlled despite many changes in medication and 5 brain surgeries. I started having nocturnal tonic-clonic seizures when I was 17 years old and a freshman in college. I did not know I was having seizures in my sleep. I would wake up feeling achy and extremely tired. My tongue would sting when I ate, because I had facial automatisms (lip smacking, picking at clothes, fumbling) during a seizure. After each seizure, I felt as if I had just run a marathon and I could not wake up on time for class.

Set on becoming a marine biologist, my major was biology. However, I frequently missed my early morning class because of my seizures. I also had trouble remembering what I had learned in class.

I had no idea why this was happening to me.

Previously, I excelled in school. I was in the top 5% of my graduating class. I had set extraordinary goals for myself. But at the time my seizures started, I feared I would never accomplish those goals.

How My Journey with Epilepsy Started

One day during my freshman year, I called my mother. She thought I sounded off, but I thought I was fine. I rarely got sick. My mom took me to see my doctor the next day. I thought she was crazy. My doctor also believed my symptoms were indicative of being a freshman in college. Once we left the office I had a seizure in the car. I spent the next two weeks in the ICU having uncontrolled tonic-clonic seizures.

When I was stable, I returned home with medication. My parents were skeptical about me returning to college, but I was relentless and determined. When I did go back, I could not remember some of the new friends I had made. In addition to taking medication, I could not drink or drive. This was devastating. I felt like a freak. Other students harassed me when I didn’t drink at parties or stayed in instead of going out. My seizures continued and cognitive retention worsened. Because I missed too much class, I had to withdraw from college and I lost my scholarship.

Life with Epilepsy

Despite these initial challenges, I graduated college in four years but switched my major to history since it was less demanding for me. During college, I started to accept the fact that this new, life altering experience would not stop me. I pushed on. If it were not for the hardworking, intelligent person I was before, I do not know if I would have been able to accept my new life with epilepsy.

When friends said they could never be as strong as I was, I simply replied, “If your life depended on it, then you could.”

After graduation, I got a job in New York City as an office manager at an IT company. I continued to have complex partial temporal and frontal lobe seizures. I would have them at work, on the bus, on the subway, and at home. My seizures continued to get worse. After trying several medications and managing side effects, including migraines, my epileptologist recommended that I have surgery.

In June 2003, surgeons resected a portion of my right temporal lobe along with my right hippocampus and amygdala. In total, I’ve had 5 surgeries to treat my epilepsy and have tried many anti-seizure medications.

My migraines and seizures continue to this day, and I suffer from painful medication side effects. Every two weeks, I have blood drawn to check my white blood cell count to ensure that I haven’t developed aplastic anemia. I have been to pain management doctors, headache specialists, and sleep management doctors for my migraines with little success. My neurosurgeon and epileptologist are trying to figure out the cause of my migraines. We are also trying a different medicine regime.

How has the Epilepsy Foundation and the National Walk for Epilepsy been part of your journey?

I have felt a real connection with those who are a part of the Epilepsy Foundation. The National Walk for Epilepsy has allowed me to teach others about epilepsy. Most people are truly unaware of what epilepsy is and believe it is a form of mental impairment. I have proven that epilepsy is not the end of your life by persevering in the face of adversity.

I am not one to give up hope or feel sorry for myself. I have worked with the National Seizure Disorders Foundation for many years and have helped spread awareness as well as raise funds for those affected with a seizure disorder.

In my opinion, the best way to help yourself is to help others.

My epilepsy may not get better, but the way I choose to deal with it certainly can. I am much more than a disorder.

That’s my story and I’m sticking to it!

Authored by: Kerri C. on 3/2017