Epilepsy is life-threatening, and so is public ignorance about epilepsy.
I might not be conscious before I finish writing this sentence. Before the end of this one, I might be dead. And that uncertainty will remain for every sentence, every paragraph, every article, and every book I write for the rest of my life.
I have epilepsy, a disease that kills, cripples, injures, and creates abject fear in those who have it, their loved ones, and their friends. Every moment of every day, I know I could be seconds away from my mind disconnecting — until sometime later when I awake, in pain, confused, incapacitated, but aware I could soon be a victim of a stranger’s wish to harm me.
4,000 Years of Superstition and Stigma
This neurological disorder has existed throughout recorded time. One of the first treatises on it, purportedly written by Hippocrates in 400 B.C., labeled epilepsy “the sacred disease” — though not because it is a curse or blessing from a deity. Instead, the writer was belittling the belief widely held at the time that seizures were somehow born of the divine. It is no more sacred than any other disease, he wrote, but “has a natural cause.”
But almost 500 years later, the depiction in the New Testament of epilepsy coming from demonic possession was widely believed. We have been burned as witches, institutionalized, chained to walls, and subjected to every form of torment and cruelty that could be conceived by the superstitious, the uneducated, and the fearful.
As Thalia Valeta, author of The Epilepsy Book: A Companion for Patients, recently said: “The history of epilepsy can be summarized as 4,000 years of ignorance, superstition, and stigma, followed by 100 years of knowledge, superstition, and stigma.”
3.4 Million People Remain Hidden Because of That Stigma
That is why, even though 3.4 million people suffer with epilepsy — more people have it than have Parkinson’s, multiple sclerosis, and autism combined — very little is heard about it. Those with the disease, 1 in 26 people, largely remain hidden, refusing to reveal their condition in hopes of avoiding the stigma.
This column hopes to tackle that public fear while explaining the current state of knowledge.
A year ago, I never could have written this — like many with epilepsy, I learned to stay silent. I knew about the discrimination we face, the friends we lose, the public fear that can limit our lives. I worried that revealing too much — the frequency of my seizures, the memory problems, the magnitude of drug side effects — could damage my social life and my career. But, at the urging of my wife, I wrote a book about my life with epilepsy, called A Mind Unraveled. The day before its release last October, I felt certain I had made a terrible mistake by revealing so much of my truth.
I listened as a mother told me how her daughter had been forbidden from ever staying at a friend’s house again after the friend’s parents learned of the young girl’s epilepsy. I spoke to teenagers who were urged by frightened teachers to leave class, and by ignorant principals to leave school. I heard from people fired from jobs, forced to hide a defining part of their lives.
These stories left me in tears. They were all too familiar — I had lost friends, been thrown out of college, and driven from a job because of my epilepsy as well. A neurologist had once told me, based on my medical history, that I was very fortunate not to have died. Scars on my body and long-healed broken bones were my endless reminders of the injuries all of us with epilepsy could face.
Time to Strip Away the Lies, Stigma, and Ignorance
Then I got mad. Furious. Enraged. All the suffering I heard about from so many different people in so many walks of life. Yet repeatedly, I had been told a series of falsehoods by members of the media while discussing my book: Epilepsy isn’t serious, epilepsy has been cured, smoking marijuana can stop seizures.
All lies, believed by the gatekeepers to public knowledge, about a desperate community that hides because of the terrible, damaging ignorance they face.
And so, I have begun writing this weekly column, a primal scream of “no more,” a hope of stripping away the mythology, of providing education, and of conveying the message to those with epilepsy that the time has come for all of us to emerge from hiding. Even if medication or surgery or implants give us greater control of our seizures, we are not gaining control of our lives until we speak.
There will be no secrets. There will be no more silence. There will be no topics off-limits. It is only by conveying the full reality of a life with epilepsy — and the unnecessary trauma inflicted on its sufferers by the uninformed — that we can finally pull this terrible disease out of the shadows.
EpilepsyU's Source: By Kurt Eichenwald From Everdayhealth.com Kurt Eichenwald is the New York Times–bestselling author of five nonfiction books, including A Mind Unraveled, about living with intractable epilepsy.