“Oh, my dog has epilepsy!”
People who experience uncontrolled convulsive seizures hear this sentence with depressing frequency. We walk the streets terrified of falling in front of a car, stand in the kitchen avoiding open ovens, stay out of the swimming pool where we drown in seconds by sucking in lungs-full of water as a seizure starts. We face discrimination by people who fear us – I was thrown out of school and required the help of the government to fight my way back in, I was fired from a job on my first day at work just hours after the boss heard I have intractable epilepsy, I lost friends after they saw me have a convulsion.
So don’t compare the experience of people who struggle with this condition every day to that of your dog. Your dog does not know he could die from a seizure. He does not know that more people die each year from epilepsy than from house fires. Your dog does not see the fear and religious hatred. Your dog is not told – as many young people are when they are first diagnosed – that his life is over. Your dog has not been abandoned by friends terrified of his health. Your dog has not sat across from a doctor studying his medical records, who then pronounces “You’re supposed to be dead.” But all of that has happened to me.
I have spent decades writing about corporate corruption and politics for the New York Times and Newsweek. I have written four bestselling books. But nothing in my career is more important to me than my new book, called A Mind Unraveled. It is a memoir about living with intractable epilepsy and is being published on Tuesday by Random House.
And I am begging, please read it. I don’t care if you buy it or borrow it from the library. Please read it. Three million Americans with epilepsy – and 60 million people worldwide – need you to do so.
I wrote this book for three reasons: 1. To educate the public about epilepsy, 2. To provide proof for those young people diagnosed with this condition that, even if you are as sick as I was, you can still succeed, and 3. To lay out how, in the face of immense trauma, it is possible to survive.
Polls show that a huge percentage of Americans think people with epilepsy are unreliable for work, should not be allowed to marry, should not be allowed to have children. The last state to strike laws making it illegal to marry someone with seizures was in 1980. More than a quarter of people say they would not want to work with someone with epilepsy. In 2010, epilepsy organizations held a meeting on how to get the public to understand, how to drag epilepsy out of the shadows, and decided that people with some level of fame should publicly disclose their epilepsy. Not many did; for awhile, to provide role models for children with epilepsy, these organizations were forced to create fictional people whose made-up stories were available to be read online.
Two years ago, a man experiencing a seizure was shot and killed by police who did not understand what was happening. An off-duty police officer was tasered by police who did not recognize he was having a seizure. I was arrested and locked up in a drunk tank when police found me unconscious, post-seizure. A family member had to fly to me to get me out of jail and bring me the drugs I need to stay alive. Errol Greene was not so lucky — the police denied him his medication, no family member could get to him. He died from massive, unmedicated seizures while in custody in 2016.
People with epilepsy suffer primarily because the public does not understand the condition. We are still subjected to enormous discrimination – a family just reached out to me and provided proof of horrible discrimination by Notre Dame University, which successfully drove away a rising freshman after he disclosed his condition. Discrimination like that from the malicious — that is the easiest to handle; they are contemptible. The worst is the discrimination by people who want to help, but who infantilize us, assuming we are incapable to decide ourselves — benevolent discrimination.
The book is getting the best reviews of any I have ever written. But it is all meaningless if people don’t read, if people don’t learn. Those of us with seizures will continue to be subjected to abuse by the malicious, as well as by the well-intentioned but uninformed.
I survived, even though I was supposed to have died. Be there for those who otherwise might not be as lucky as I have been. People with epilepsy are terrified to step forward, to reveal their condition because of what happens to them after they do. The only way to fight this is with public education.
Please read A Mind Unraveled. Learn how you can make the lives of children, men, and women — people who are facing enormous challenges — a little bit better. Or at least, learn how not to inadvertently make their lives worse.