When did your journey with epilepsy begin?
The beginning had two parts. For much of my childhood, I experienced staring spells. While they frightened me, I did not raise the issue with my pediatrician until I was 16. He assured me that I was simply tired and drank too much coffee – probably true, but since both of those are triggers of seizures, he missed what was happening.
When I was 18 and in college, I suffered a bad head injury. I experienced my first tonic-clonic seizures soon after. For almost two years, the quality of my care was terrible, and the number of my seizures grew astronomically over that time. A neurologist finally found the medication that cut back significantly on the seizures.
But my journey was not over. I was thrown out of school because of my seizures and had to fight my way back with the help of the federal government. I lost a job on my first day at work after the employer learned of my epilepsy.
There were challenges, but I still achieved all of my aspirations. I did not let the ignorance of others slow me down. I still am not completely under control – my neurologist says it is unlikely I will ever be – but that doesn’t matter to me. After 13 years, my convulsions got under control, so I see my life as much easier. I can live with epilepsy, and I fight anyone who says it must interfere with my goals.
What has it been like living as an adult with intractable epilepsy?
Epilepsy did not define me and did not define my adulthood. It was a difficulty, but something I had to live with. Yes, I experienced discrimination, yes I endured a lot of hospitalizations and the like. But I never let it stop me. My parents – who wanted to bring me home as a young adult – came to accept that I needed to live a normal life, independent. Later, I married, and my wife considered epilepsy just part of the package. Even my children took it in stride after they learned about it. So, my life with intractable epilepsy has been my life – one that I adore.
What do you want people to know most about living with epilepsy/seizures based on your own experiences?
That epilepsy does not have to stop you. The way I achieved my goals, even when still experiencing convulsions, was by visualizing the life I wanted to live. I refused to give up on that, I refused to be classified as “the epileptic” or to allow the condition to become central to my life. If I had a seizure, I did my best to recover, then moved on. Sometimes those seizures caused damage, but all I could do was keep going. What other choice did I have? Keep going or give up. And I was not going to give up.
For those that apply a stigma to epilepsy what would you tell them if you could to erase their perception?
I would confront it head on. “Look at me. What is different about me?” I am a normal person with a disability. Some people are terrible, or cruel, or selfish. I am none of those things. I am a better person, someone deserving of trust and love, than many “normal” people. We are defined by our character and our values, not by our challenges. Sometime our challenges shape our character. I believe epilepsy, because of everything I was forced to confront, made me a better person than I otherwise would be. How can anyone look down on that, stigmatize that? Stigma is borne out of fear of the unknown. And there is nothing to fear.
What compelled you to share your personal story and write this book?
Epilepsy is still in the shadows. There is still a stigma attached to it, people with epilepsy are afraid to discuss it, the public knowledge about it is dreadful. In 2010, a group of epilepsy organizations met and decided people of some prominence need to come out and discuss their seizures for the purpose of countering all of those problems. Few did. Since I had the ability to write a book, since I had a publisher, I decided someone needed to step up. So I did.
What is your favorite activity to do apart from writing?
Music – songwriting and performing.
What would you like people to know about Kurt Eichenwald?
Even with intractable epilepsy, I love my life.
What is your inspiration?
I have different inspirations, but I find that the think I most react to is injustice. From the time I was thrown out of school because of my seizures, I have been someone who wages journalistic war against those with power who harm or oppress those without. It led to my becoming an investigative reporter and an author.
But, outside of work, I am inspired by my family. When I was at my sickest, I visualized myself in a life where I was a good husband and a supportive father. My family is endlessly loving, and they inspire me to be a better person every day.