In My Own Words
Paul Rothbein is a freelance Internet marketing consultant, and also a part-time speaker for the Epilepsy Foundation of Texas. He lives in Dallas.
Having epilepsy was a topic I ignored most of my life because of the embarrassment I felt when other people knew I had epilepsy. I was bullied in high school and kids called me “seizure boy.” Until recently, there has been a lack of education in public schools about bullying children with epilepsy. However, that is beginning to change with epilepsy education programs in public schools. Several Epilepsy Foundation affiliates have been working with The Anita Kaufman Foundation— whose mission is teaching the public not to fear people with epilepsy— to educate 5th graders about epilepsy in Metropolitan New York.
When I began looking for an after-school job in high school and college, I was told not to let the employers find out that I have epilepsy because it could prevent me from being hired. Even with the protection of the Americans with Disabilities Act (ADA), having epilepsy in today’s society can risk equal opportunity employment as many employers are able to find loopholes to deny employment for people with epilepsy. Obviously, that should not be the case. This is just as bad as discriminating against someone for their religion, race or ethnicity.
I feel no need to hide my epilepsy from an employer— even if that means I risk receiving equal opportunity employment. I refuse to work for a company that discriminates against people with epilepsy. A good company to work for embraces diversity. Supporting the rights of people with epilepsy has served me well—emotionally and professionally—and it happened to me unexpectedly, but not by accident. I believe it is a result of good karma. A few years ago, I spoke about epilepsy on behalf of the Anita Kaufman Foundation at the same high school where I was bullied as a student. Because I am shy, speaking in front of hundreds of people was not easy. I even showed a hospital video of myself—in front of the entire school— having a tonic-clonic seizure. The kids in the audience were mesmerized because most of them had never seen someone having a seizure. Did the kids make fun or laugh at me after hearing me speak about my epilepsy or seeing the video of me having a seizure? No. My talk and the video brought awareness about epilepsy and helped people understand that people with epilepsy are no different from anyone else. My talk gave me newfound confidence and also helped me get a job with a publication for people with special needs because the magazine’s editor was in the audience and was impressed with my presentation. They say that silence is golden. That is not the case when it comes to spreading awareness. Silence will lead us nowhere.
Although my epilepsy is controlled, I must take two antiseizure medications daily and will probably need to be medicated for the rest of my life if there is not a cure found for epilepsy. The medications have been a challenge. Some of the side effects of the medications caused severe irritability and resulted in anger management issues, which impaired my social life. I mentioned this to my neurologist, Dr. Orrin Devinsky, and he prescribed a third medication to control the side effects of the antiseizure medications. I am grateful that the medications control my epilepsy and most, but not all, of the sideeffects. Recently, however, I was denied coverage for an individual health care plan as a result of the numerous epilepsy medications I take, despite the fact that I have been seizure-free for 8 years. I hope there is some type of health care reform which will no longer make this type of discriminatory behavior legally possible. I have been seizure-free for 8 years because Dr. Devinsky pinpointed the focal point of my seizures and prescribed the medications to control them. I am lucky to have a really good neurologist, and I travel all the way from Dallas to New York City to see him because he is so terrific.
Having epilepsy is a disability and it is a part of my life. It is something I have. It is not a definition of who I am. We all have disabilities—some minor, some major— and we should recognize people for what they do, not for what they have. There are many famous, accomplished people who have epilepsy. Everyone recognizes Van Gogh as an artist first and as someone with epilepsy second, if at all. Tony Coelho, former congressman, principal author of the ADA and former board chair of the Epilepsy Foundation, has epilepsy. There are almost 3 million people in the United States who have epilepsy. They come from all walks of life.
Living with epilepsy has taught me to face difficult challenges and overcome the obstacles that have been placed before me. The upside of having epilepsy is that it has made me a strong person who is prepared to face the challenges that come with living in today’s complicated world.
The In My Own Words column gives people whose lives are affected by epilepsy the chance to share experiences and solutions to their problems. These are real stories by real people that show strength, resilience, optimism and courage. We hope they will inspire others.