Nora’s Story
When I was four, I was diagnosed with epilepsy and put on meds, and I remember wishing that I was still only three, because those meds changed me, making me sluggish, tired, and clumsy. I was fortunate compared to some other people with epilepsy since, with the exception of one grand mal seizure, the kind of epilepsy I had was petit mal (or absence seizures). These were invisible to most people: I would just stare off into the distance for 15-20 seconds – during which time I was unconscious (or “absent”) – and then come back to consciousness. This kind of seizure did not attract any attention or stigma to me, the way a grand mal would have. Still, these episodes greatly affected my life. During certain periods I was “absent” quite a lot of the time. As a result, I missed a lot of information – whether this was teachers’ instructions, academic learning, or social cues – so reality for me was fragmented, and I found the world around me quite confusing. For instance, I’d missed the teacher’s announcement, so I couldn’t understand why all the kids were laughing, or clapping, or filing out of the classroom.
In many other respects, though, my childhood and adolescence were normal. I went to summer camp, took piano lessons, and had friends, and starting in second grade I also wrote short stories (already back then I was a writer in the making). There were even periods when I was doing so well, my neurologist took me off my meds, and I’d have a couple of years of feeling “normal”. But then something would happen and I’d have to go back on the meds. So I experienced two different realities: the “normal” periods of my life, and the “sick” ones. And even during the “normal” ones, epilepsy was ever-present. I dreaded having to go back on meds when the good periods ended (which they always did). And because of the epilepsy, I felt that I was different from other people. No one in my family, and no one else I knew, had epilepsy. If there had been groups where I could have met other kids with epilepsy, that might have been helpful, but those did not exist back then.
I grew up, as a child and teenager with epilepsy, 55-65 years ago, when medical knowledge was less advanced; neurological care was oriented to adults and not child-centered; the drug treatments were cruder; and societal attitudes toward people with epilepsy were even less accepting and more stigmatizing than they are today. Nobody ever talked about epilepsy in public, and I never shared that aspect of my life with anyone outside my family, not even with good friends. But the high school I attended (where no one knew about my epilepsy) indirectly gave me support. This was a “free school” that encouraged individuality, the arts, and creativity, and challenged its students to question social norms and the typical ways of doing things and living life. This put a positive spin on my experience of myself as being different from other people, and together with my already-established identity as a writer, it made me feel that being different or atypical was actually something to be proud of, rather than the opposite. Also in high school I discovered, to my delight, that many of the greatest writers, artists, and leaders of all time had had epilepsy: Leonardo da Vinci, Michelangelo, Van Gogh, Tchaikovsky, Beethoven, Gershwin, Dickens, Dostoevsky, Hemingway, Flaubert, Agatha Christie, Edgar Allan Poe, Lewis Carroll, Socrates, Newton, Caesar, Caligula, Alexander the Great, Napoleon, Lenin, Theodore Roosevelt, and Harriet Tubman. So I began to think of myself as belonging to a special and wonderful club.
It’s probably no coincidence that in college I went into social work, chose to work with families that had children with developmental disabilities, and eventually did my PhD dissertation on the families of children with autism. I learned a lot from these professional experiences, and not only about other people, but also about myself. Meanwhile, when I was a young adult, I outgrew my epilepsy, as sometimes happens with people with petit mal, and I never again took meds. Still, my epilepsy is not totally behind me. Certain vestiges of it – neurological, not just emotional or psychological – remain with me to this day (for instance, sensitivity to flashing lights, and a few other things). These minor “eccentricities” of mine are not something anyone else would notice unless they knew what to look for, but still they are part of the legacy of having had epilepsy.
There are also parts of this legacy that are positive. Thanks to my epilepsy, I am skeptical about the concept of normalcy, and am very inclusive and empathic toward anyone who is “different,” whatever the source of their differentness. My epilepsy has also made me a close observer of myself and of other people, both crucial skills for the writer I became.
In 2000, I left social work in order to write fiction fulltime. Then more recently, after I’d written three books, I started wanting to share my experience of epilepsy in literary form, and was surprised to discover that there is very little contemporary fiction (novels, novellas, or short stories) written about epilepsy for adults. There are memoirs and children’s books about epilepsy, but not much adult fiction, so I decided to write a novella about one woman’s experience with epilepsy and how it impacted her life. This novella, In Sickness and In Health (just published on March 1st), is about the long-term effects of the stigma associated with epilepsy; the shame, secrets, and damage to intimate relationships that can result; and the strength, resilience, and love that can prevail. It is a work of fiction, not a memoir, but (as writers do) I wrote this book drawing on some of my own experiences.
I hope that In Sickness and In Health will help bring epilepsy out of the shadows and into the light of day; increase awareness and understanding about epilepsy among the general public; and provide some support to people with epilepsy. I am grateful for the chance to share my story both in novella form and also here, because it is only through sharing our stories – in literature or other ways – that we can enlighten and educate about epilepsy, and bring about change for people with epilepsy and their families.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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