One of the oldest chronicled disorders, Epilepsy has been steeped in stigma and myth. Those who have it are described as “afflicted” and often face very real forces and forms of discrimination and ridicule. I believe this is due in great part to three basic characteristics of Epilepsy:
The first characteristic is its episodic nature; it remains hidden, “invisible” to others for what can be long periods of time. When a seizure occurs, then, it can feel like a betrayal to both the person having it as well as anyone viewing it. This can erode confidence.
The second is its lack of uniformity: with seizures taking so many forms it is hard to categorize and simplify. To know “for sure” what it looks like, feels like or how it will “present” to use medical parlance. Even in one person’s life his or her seizure type can evolve and change over time. This undercuts predictability.
The third characteristic is its resistance to being known: there is no cure, in 80% of cases there is no known cause (called ‘idiopathic’ epilepsy) and too often medication is only partially effective. Epilepsy refuses to be controlled; it is very mysterious. This can create fear.
Betrayal, unreliablity, unpredictable, mysterious…
These characteristics are, I believe, the primary contributors to epilepsy’s stigma. People distrust what they cannot understand. They don’t like to be fooled (“She was fine just a minute ago!”) or surprised (“It all happened so quickly”) or frightened (“That convulsion was the scariest thing I ever saw; my friend looked positively possessed!”). Further, doctors and parents don’t like to be defeated when they try, repeatedly, to help. As a culture we are uncomfortable with the mysterious. And no one likes to be afraid.
What has all this to do with Beauty or a possible practice of True Beauty in everyday living? Bear with me while I try to share the connection as it occurred for me.
After selling my entrepreneurial business to big biz of corporate America, I had a bit of time on my hands.
It transpired that I came to volunteer with the Epilepsy Foundation of America, serving on their National Board of Directors. Prior to this I’d lived quietly, privately with epilepsy all my life. It was a surprise, therefore, to discover that there was a whole community of people active, interested and educated about epilepsy. A patient advocacy group, even! They actually talked about it! And I had so much to learn about epilepsy, which felt odd; a condition that had so circumscribed my life, my being so out of the loop — not even knowing there was a loop!
It also came as a surprise that I had so much to contribute to this community. Back then the Foundation’s Board was made up mostly of medical practitioners, businessmen and some lawyers. It turned out that I was the first “consumer” — person with epilepsy — to be elected to the board.
I loved my work there. As a representative of the Foundation I traveled around the country as a public speaker, sort of Epilepsy’s “poster girl of success,” to educate others and raise money for various local Foundation affiliates. Unemployment and underemployment are major issues for people with epilepsy. My story of starting a business, working long hard hours, work-related travel, managing and inspiring employees both in-house and across the country — it was a story that flew in the face of the idea that it was difficult to employ a person with epilepsy or work around their issues.
This proved to be an important puzzle piece for me — my public participation in what had been a very private circumstance; public revelation of a private struggle.
Action, not abstraction. Being visible, not invisible. Vocal, not silent.
It was not easy, at first, to find and publicly tell my “real” truth. I came to be able to articulate what I had inherently known: while not pretty, or convenient, and sometimes brutal and deadly, epilepsy nonetheless transfers its own gifts. It can confer a kind of wisdom through its particular perspective. As an alternate way into knowingness, epilepsy can be pretty efficient. To acknowledge this was a significant milestone in my spiritual perspective and development. And I was saying out loud what many others with epilepsy inherently knew. In facing epilepsy we become strong. We are capable. We are not perfect, but who is? We are often sophisticated problem-solvers…we have to be.
In my universe, it revealed the connections as well as the distinctions between Truth and Appearances. And this distinction is a key component of True Beauty. It was through the topic of epilepsy that I was able to make the leap from inner truth to outer connection, between revelation and the dispelling of despair. Around the topic of this ancient and misunderstood disorder I was able to articulate — first for myself, then for others – the integral uselessness of “appearances” in the face of strong self-knowledge.
It may seem obvious, but to the person struggling with the stigma attached to a seizure disorder, it is not at all obvious. Nor does self-knowledge come easily; especially when the doctors don’t have many of the answers for the physical or emotional side of the equation. Do you know that certain types of epilepsy are believed to effect personality? Try that confusing discussion/possibility on for size when you are a hormone-ridden, answer-seeking teen-age girl.
I hope many get it: their assumptions about epilepsy, the appearance of epilepsy need not be its truth, their truth. The eventual truth/outcome. When delivering speeches I would see eyes light up; hope enter in; parents laugh. The dismantling of that assumption, that “automatic pilot” sort of thinking helped create the connection for others, I believe, between Truth, Appearance, and yes — Beauty.
It was humbling to realize that it was in part my story, my experience that held power for others. That to hear me — one of “them” – gave hope and inspired courage. Further, my marketing and communications expertise, garnered over the years in the business world, now allowed me to help the Foundation re-frame and re-tell the story of Epilepsy; undo some of the preconceived notions that have been handed down generation after generation.
Through the experience of having seizures I have been exposed to and learned so much. To name a few: altered states of consciousness that led to deeper understandings; the ephemeral nature of my own existence; confrontation of one’s own fears – real, imagined and a combination of two; the poignant beauty of existence; the hierarchy of importances – personal and otherwise.
The expression of my truth and being as a person with epilepsy helped to dispel stigma, brought new hope and created realizations for others. It brought light, a truth, into a dark and ignored corner. This was, to me, a form of the beautiful. How? It was contributing to harmony, where before there had been discord.
Then, this sharing my life story with others and having it be meaningful to them – what a gift! It got me thinking about how to “universalize” the lessons, about my conviction about Beauty, and how it was present elsewhere in everyday life. Had others thought about this? Written about it?
Circuitous though it may seem, it was my first inkling that Beauty could, indeed, be a practice, like meditation, or running, or…
The nine years at the Epilepsy Foundation gave me back so much more than I gave. Not to be hyperbolic, it transformed my “profane” success in the consumer-goods world into a tool for a more sacred work. I experienced a non-visual expression of Beauty on another sort of canvas. And it was powerful. It was a deeper understanding — and it has led me into what I am now calling The Way of Beauty.