CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

It’s so hard. I don’t know where to begin. I was 29 when I had my first seizure. Five years out of law school, I was on the “fast track” as an associate at a major Chicago law firm. The challenges I took on as a practicing attorney didn’t mean there wasn’t time for a thriving social life and gratifying community service.

I taught classes at a community college. There were happy hour on Fridays and black tie fundraisers. I enjoyed the theater, jazz clubs, comedy clubs, Michael Jordan and the Bulls, and trolling art galleries. I volunteered on local and congressional campaigns, served as a law school board member, lectured juvenile offenders on resume writing and interviewing, and played Big Sister to a young teen through high school and college.

The day I had my first seizure was like any other. At some time that afternoon, I was on the telephone with a colleague when I stopped midsentence. My co-worker hung up, assuming a partner had come in to my office. A few days later, I “blacked out” again while on the telephone with her. My friend made her way to my Valdaoffice, uncomfortable with my behavior. I had not left my chair. The telephone receiver was in my hand. I came to after about ten minutes. I felt lost and confused—like I had missed a piece of the day.

I contacted my internist for help. Everyone on both sides of my family has high blood pressure. I was expecting that I had developed hypertension. Days later, my doctor tentatively diagnosed me with epilepsy and referred me to a renowned neurologist. That relationship was a long and difficult one.

Working with my neurologist, I had my first EEG, MRI, PETscan, and CATscan. Early on in his analysis, I spent a week in the hospital, hooked up to an EEG day and night. There was no privacy in the room I occupied: Through a two-way mirror, observers watched and recorded my every movement. I had to sing while in the bathroom. It was determined that I was suffering from complex partial seizures. The left front temporal lobe was the affected part of my brain.

I had never suffered any head trauma. I was never a victim of encephalitis. I had never used narcotics. No one on either side of my family knew of any relative—living or dead—who had suffered from epilepsy. There was no explanation for why I developed the condition.

It was on to treatment. My first question was, “Can I continue to work?” My neurologist encouraged me to keep going, although he warned that the side effects of the medications would make it difficult for me. Working to control my seizures, my doctor prescribed combinations of at least ten medications. For a period of time, I was taking over 20 pills per day. My skin broke out. Some of the medications made me dizzy. Others took away my appetite. One was an insomniac. Several made me nauseated. One made my hands tremble. The most effective one caused a stir when some patients developed aplastic anemia. There were reported deaths. My only alternative was to continue to take the medication and go to the hospital lab on a weekly basis for blood tests. My arms were so bruised, I looked like a junkie.

Treatment also meant that I had to battle with my insurance carrier for coverage. Time and again, even after pre-approving outpatient tests, hospitalization, and prescriptions, my carrier would deny coverage when invoices were submitted, deeming the treatment “experimental.”

For fifteen years, life for me was up and down. I wanted desperately to be “normal”—to provide for myself—but no combination of medications or lifestyle changes kept me out of the emergency room. I had to give everything I had to make it from one day to the next without another fall, another burn, more stitches, another chipped tooth.

By chance, early in 2003, I learned that NIH was conducting a study for “people like me.” Late one night, I emailed a personal profile and summary of my medical history. The response was immediate: I was a prime candidate for the protocol. NIH flew me to its campus for tests and to meet the medical team. I sold my home, paid off all my debt, and moved to Washington, DC to begin work. After a year of tests and analysis, I was given the opportunity to undergo surgery. The trick was to remove portions of my brain—part of the left front temporal lobe—without having adverse effects on my memory, reasoning ability, and motor and verbal skills.

Surgery was a success. Taking a fraction of the medication I lived on before the operation, my seizures are controlled. My personal and professional life is my own. Nothing is perfect. I still have to bully insurers for coverage. I’m doing fine professionally. However, there is always the question of how I explain relocating to Washington after years in Chicago. Individuals with epilepsy are no longer burned at the stake, but we are often considered “defective.”

Fifteen years in flux means that I missed out on a lot. On the up side, with my seizures controlled, I now have energy to spare.

CURE epilepsy

Valda

 

 

CURE CURE is a non-profit organization founded by mothers of children with epilepsy who joined forces to spearhead the search for a cure.

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