Epilepsy from Generation to Generation: Understanding and Changing the Silence and Secrecy Script

This post is part of the Epilepsy Blog Relay which will run from March 1 through March 31, 2018.  Follow along!

At some point after I met and married my husband, I learned that his father (whom we'll call Paul), a successful chemical engineer, had epilepsy.

Back then I knew very little about epilepsy.  And sadly, the little I thought I knew--which came by word of mouth and from the media--was mostly wrong.

I wish I could say that having a relative with epilepsy caused me to become more informed, but it didn't.  Acknowledging epilepsy's presence in our extended family, let alone discussing it. I soon learned, was unwelcome.  Talking about epilepsy was perceived as uncomfortable in an unkind way.  The message was clear;  epilepsy was a private health concern, best kept private.

Because my father-in-law Paul's epilepsy was very well controlled for most of his adult life, it was easy to forget that it was there.  The code of privacy, secrecy, and silence surrounding seizures was very strong.  On the rare occasions that Paul had break-through seizures (twice in two decades) the information that came through to us was minimal.  It was enough to know that Paul had had a seizure; we didn't need to know more, except as it might impact plans that included us.

Those decades were a busy time in our lives, filled with graduate school and then young children, and so whatever curiosity I might have had about epilepsy, was left by the wayside in the wake of more pressing matters.  There was no imperative to research and read about a condition that occupied such a small space in our extended family's life, that seemed to cause trouble so infrequently, and that almost begged to remain private and unexplored.

And so, I remained ignorant.

The wider society didn't help in this regard either.  In sharp contrast to the success of awareness and educational campaigns for so many other conditions, epilepsy awareness and education campaigns have been very unsuccessful.  Most in our society still know little to nothing about seizures and epilepsy.  Common knowledge consists of the misinformation on TV and in movies and the myths that still circulate by word of mouth.  Society simply hasn't bought into the idea that we need to be educated about epilepsy the way we are about autism, breast cancer, and so many other conditions.  Common knowledge in a society really does matter.  And when that common knowledge doesn't include even the most basic information about a common medical condition like epilepsy, the result is a lot of needless suffering, social isolation, and a lack of societal supports.  Without successful awareness campaigns, the ignorance--and stigma--surrounding epilepsy continues.

And so I remained ignorant about epilepsy.

And thus it was that I was very ill-prepared when, much later, our youngest child had her first seizure at age 2.  My ignorance was not only unhelpful, but dangerous.  Walking into a room where my little daughter Awesome had been playing with two other children, I found her lying flat on her back on a large coffee table, eyes open and staring straight ahead, totally unresponsive, and yet, I soon realized, breathing normally.  I simply had no categories in my mind--none whatsoever--to explain what I was seeing.  And since, in my ignorance, seizures involved convulsing on the ground with repetitive movements--like on TV--it never occurred to me that this could be a seizure.  Standing there, completely bewildered, I didn't even think to call 911.  Not knowing what else to do, I finally scooped my mute, unresponsive child up in my arms and ran to my neighbor's house.   Maybe she could help me figure out what to do?

My neighbor, being a nurse, immediately knew my daughter was having a seizure; I was incredulous--a seizure?!  Really?!  What followed was very much like a nightmare.  The staring seizure--which soon generalized into a convulsive seizure--went on and on and on for nearly an hour and a half.  There was 911, ambulance, IV rescue drugs, ER, an army of doctors and nurses around her bed, and the certainty on my part (not contradicted by medical personnel) that my daughter was dying.  Finally, in the ER with her fourth dose of IV antiepileptic drugs, the seizure stopped.  By then I was in a deep state of shock, a shock that only gradually subsided over the next few days.

Our epilepsy education began with that first hospitalization.  We were not allowed to leave the hospital until we'd been properly educated on seizure first aid and had been given emergency seizure rescue medication, taught how to use it, and quizzed to make sure we understood.

A month later Awesome had a second long seizure--this one stopped with the emergency rescue medication we'd been given earlier--but not before she'd vomited and aspirated, precipitating an 18 day hospitalization for aspiration pneumonia, misdiagnosed for the first 14 days, causing the temporary (lung tissue regenerates) loss of half a lung.

Thus, our introduction to epilepsy was both dramatic and traumatic.  Because of this, we learned early on, in a very convincing way, that our daughter's health--and sometimes even her life--depended on our ability to be active, educated participants in her healthcare.  We started to educate ourselves.  We read all the books we could find about epilepsy--including a three volume medical textbook on epilepsy.  We used Google Scholar to find relevant medical studies, medical reviews, and medical textbook excerpts.  We joined online epilepsy support groups to read about others' experiences with epilepsy and to understand the "lay of the land"--the larger context and the patterns and clues that emerged from it.

Within our own extended family, we finally now broke the code of silence surrounding epilepsy.  I wanted to know everything that was possible to know about our family history of epilepsy.  Consequently, I called my father-in-law Paul and asked him oodles of direct questions about his experiences with and medical history related to epilepsy.  We also talked to other extended family members who'd been close to Paul over the years, about what they'd observed and what they remembered regarding his epilepsy.

Paul, we found, wasn't the only family member with epilepsy.  His late mother, whom we'll call Miriam, had also suffered from epilepsy.  While Paul and others could supply details about Pauls' epilepsy--details that we could eventually piece together into a medical history of sorts--neither Paul nor anyone else, could give me enough details about Miriam's epilepsy to construct even an incomplete medical history.  It was unclear at what age her seizures had started, whether there were any precipitating factors, whether her seizure types had changed over time, and whether she took seizure medication--and if she did--whether her seizures were fairly well-controlled or intractable.  In short, all we knew was that Miriam had had epilepsy, and that some family members had witnessed some of her seizures.

The more I've learned about the history of epilepsy and about how those with epilepsy were discriminated against and rejected in that earlier time and place, the more I realize that it's not too surprising that we have so few details about Miriam's epilepsy.  As a 14 year old would-be immigrant who had arrived at Ellis Island in 1908, if Miriam had had epilepsy and hadn't been able to conceal it from the immigration authorities (and trust her family members to do the same), she'd never have been allowed to enter the United States.  Epilepsy was an absolute reason for rejecting immigrants entry into the US.  And if, as a minor, Miriam had been rejected as an immigrant because of epilepsy, her family would have faced a terrible decision.  Abandon their immigration plans--in which they'd just invested their life savings--and return to the Old Country as a family--or send Miriam back to the Old Country alone.  Thankfully, there's no indication that they faced this decision.  If Miriam did indeed already have epilepsy at that point in her life, it was apparently successfully concealed from the immigration officials.

Once in the US, Miriam, if she had epilepsy, would have faced additional difficulties.  Miriam entered and came of age in the US during the height of the popularity of the Eugenics Movement.  As a young woman, she'd have been subject to early 20th century Eugenics Laws that forbade those with epilepsy from marrying and from procreating--the latter through laws that mandated forced sterilization for those with epilepsy.  (My father-in-law, my husband, and my daughter would never have existed.)

In the US in the late 1800's and early 1900's, those with epilepsy were not only subject to sanctions that kept them from immigrating, marrying, and procreating, they were also commonly segregated from their families and the rest of society and locked away--like lepers, the insane, or the "feeble minded"--in asylums and epilepsy colonies.  Those who weren't locked away were further prevented from living a normal life by laws that forbade those with epilepsy from being able to go to movie theaters, restaurants, and other public places.  

In short, if Miriam indeed did have epilepsy when she was young, and more importantly, if that epilepsy hadn't been kept secret, Miriam's life as she came to live it wouldn't have been permitted.  At all.  Miriam's privilege to immigrate and to become a US citizen; and her right to marry, to have children, and to have a normal life in which she could move about freely in public spaces--all of it--would have been taken away from her with the full support, authority, force, and blessing of US Federal, state, and local governments and their various legal systems.  Having epilepsy and having had the authorities--the governments, the law--know that she had epilepsy, would have resulted in Miriam never having had the chance to become a US citizen, and if she had managed to become a US citizen, in her being stripped of many of her civil rights and civil liberties.

Did Miriam have epilepsy when she was young?  We'll never know.  Certainly if she did, she'd never have revealed that fact to Federal census takers or to anyone else who'd have written that information down somewhere where we could now find it.  Even Miriam's son Paul didn't know when in her life his mother's seizures had started.  Miriam never told him.  Miriam bore the burden of her epilepsy alone.  Miriam's ability to have a normal life was a direct function of the success of her ability to hide her epilepsy--to keep it a secret and never speak of it or admit to it.  And likewise, of her family's ability to do the same.  Given this situation, of course we know nothing about Miriam's epilepsy.

What we do know of Miriam's life is that she married her sweetheart, a chemist, and together they had two healthy children.  And things generally went well for her until they didn't.  In 1938 during the Great Depression, at a time when she was 43 years old, Miriam's husband died suddenly and unexpectedly in a lab accident, leaving her a widow.  Miriam took a job in a garment factory then, to support herself and her children.  How did Miriam's epilepsy--if she had seizures then--impact her job?  Again, we'll never know.

What we do know though, is that two years later, in 1940, life got harder still, when her 8 year old son Paul was hit in the head with a baseball and subsequently developed absence (petit mal) epilepsy.  Miriam took him to a neurologist, but the anti-epileptic drugs prescribed didn't stop the more than 100 short seizures Paul experienced every day.  The intractable absence seizures would continue unabated until Paul was about 18 years old and he outgrew them.  But when the absence seizures finally did stop, the new generalized tonic-clonic (convulsive) seizures started.  Thankfully, however, the new tonic-clonic seizures were well-controlled with anti-epileptic drugs--and would continue to be well-controlled for the rest of Paul's life.

Paul, tall and handsome as a young man, was also creative and extremely bright.  Despite the intractable absence seizures in his pre-teen and teen years, Paul tested into and then graduated from a high school for the scientifically and mathematically gifted.  Thereafter, Paul went to college and graduated with a degree in engineering, becoming a very success chemical process engineer.  Paul grew up and came of age during a time, the 1930's 40's, and 50's--when the laws on the books were very discriminatory and unkind toward those with epilepsy.  Paul too learned to keep his epilepsy underground.  To not speak of it.  He married at a time when the Eugenics laws against those with epilepsy marrying and procreating were still on the books--and still enforced.  Thus, he didn't tell his finace Alice of his epilepsy; Alice learned that Paul had epilepsy only after they were married.  He didn't tell his employers either, that he had epilepsy, despite the fact that his job required him to do things that were dangerous for someone with epilepsy--like walking along exposed I-beams stories above the ground on construction sites.

Alice discovered that her mother-in-law Miriam had epilepsy several years after she'd married Paul, when--after having left Miriam to babysit her two young children for a couple of hours--Alice returned to find Miriam having a seizure.  Neither Miriam nor her son Paul had told Alice that Miriam also suffered from epilepsy.  The secrecy that had enabled Miriam to have a life, continued within the extended family itself.  Subsequently Alice was shocked when Miriam would have seizures while in the room with Alice and other family members--and no one in the room would acknowledge the seizures.  Conversations continued as if nothing were happening  Epilepsy was like the proverbial elephant in the room.  Right there in plain sight, but ignored and denied.  And while it initially freaked her out, Alice soon learned that denial was expected of her too.

And so later, when Paul had a break-through seizure at home in her presence, Alice simply turned around and walked out of the room as the seizure started, leaving Paul to have his seizure, recover, and recompose himself again--alone.  When they saw each other again later, neither spouse spoke of the seizure that had taken place.  It was the way Paul's family had taught Alice to give Paul his dignity.  Alice had been taught to ignore seizures rather than give seizure first aid.  And so she gave no first aid.  Epilepsy wasn't a topic the two--as husband and wife--discussed.  Alice wasn't involved in Paul's epilepsy health care; indeed, she didn't even know whether Paul was or wasn't taking epilepsy medication--or what that medication might have been--during all the years they were married.  Paul didn't trouble Alice with any of that or speak to her about it.  He managed his epilepsy himself; he visited his neurologist himself without Alice's knowledge or company; he took care of his anti-epileptic drug prescriptions and dosing himself.  Paul, like his mother Miriam, bore the burden of his epilepsy alone.

As we talked to my father-in-law and other family members and began to hear their thoughts and stories, we were somewhat shocked by the extent to which the code of silence, secrecy, shame, and stigma surrounding epilepsy had profoundly affected their lives, interactions, relationships, knowledge, and even the seizure first aid that was or wasn't offered.

Extreme adaptations grow out of extreme situations.  If you want to understand how extreme adaptations happen, you have to understand the extreme situations that spawn them.

Through the first seven decades of the 1900's, people with epilepsy didn't just grapple with an attitude of discrimination or an amorphous stigma that made them feel bad; they grapples with Draconian laws put in place by a society that feared and rejected them.  Societal sanctions against those with epilepsy were still standing, written into law and still on the books in many places until the 1960's or 1970's--and as late as the 1980's in some places.  The history of epilepsy just two generations ago was one of codified and blatant stigma, discrimination, rejection, exclusion, ostracism, and bodily violence (involuntary, forced sterilizations).  Not only did those in past generations who suffered with epilepsy have to live with the difficulties of epilepsy itself, they also had to grapple with the way that the society around them rejected them in every way possible, making their hopes for a normal life nearly impossible.

And so, as a consequence, as a survival mechanism, and as a wise, adaptive strategy, those with epilepsy went underground.  They learned to keep the secret of their epilepsy.  To never speak of it.  Not even to family members.  Or employers.  Because that was the only way they could survive and have the chance at a normal life.  And from generation to generation, the survival strategy of silence and secrecy was handed down.  

The silence and secrecy that has reigned among those with epilepsy even into the 2010's is the residual of an essential and necessary adaptation--a strategic survival mechanism--aimed at enabling normal life by making a safe place for that life to exist.  Silence and secrecy was the only way an oppressed and rejected group of people could forge a normal life for themselves.  When your society rejects you in every way possible, treats you as lesser and as defective, and seeks to shut you out of life itself, silence and secrecy become self-protection.

There are reason why epilepsy awareness campaigns have lagged so far behind awareness campaigns for other conditions and chronic illnesses.  Epilepsy's history is so difficult in this regard that even disability rights advocates still tend to want to disassociate from, to feel free to discriminate against, and to exclude those with epilepsy from their programs.  In short, epilepsy has traditionally been at the bottom of the heap--one of the most feared and hated of medical conditions and disabilities.  And so it is that those with epilepsy have been legislated against. Medically neglected.  Had their future hopes taken away as epilepsy research has been barely funded.  Ostracized, stigmatized, rejected, and neglected--even by groups that should have been their allies and advocates.

And while all this bad stuff may seem long ago to many, generationally it isn't.  We're just a couple of generations out from a time when society made normal life almost impossible for those with epilepsy.

We can't forget our past.  Nor can we forget the sufferings of past generations.  The bravery it took for those with epilepsy to stay silent and to hide the fact of their epilepsy so that they might have a life with hope, love, and dignity.

But we also have to understand that the adaptive strategies of silence and secrecy, while essential and helpful in past generations, are no longer helpful to us.  They are no longer necessary.  And they are most important, no longer helpful to us in bringing about a world where epilepsy is understood and where those with epilepsy are finally accepted and supported as fully as those with other chronic or acute health conditions.  In fact, silence and secrecy going forward simply help perpetuate ignorance and continued suffering, neglect, and hopelessness.

We've got to start to think through how to finally rise out of the shadows and tell the story of epilepsy's history and the stories of those with epilepsy in a way that captures hearts and minds.  We've got to lay aside tired old strategies for awareness put forward by those who grew up and came of age during a time when even mentioning the word epilepsy was an extremely brave thing.  Instead, we need to explore new, more effective strategies, strategies utilized successfully by other marginalized groups.

It's time to come out of the shadows.  And start to advocate in the light.  It's time to demand dignity and the end to discrimination and stigma.  It's time to start to effectively advocate for those with epilepsy to have a chance to live life in a society that strives to include and understand them and their journeys and struggles.

Please consider subscribing to my blog and other epilepsy blogs in the Epilepsy Blog Relay.  If you are a blogger, consider helping create a more cohesive epilepsy blogging community--and eventually an activist community--by linking to other epilepsy blogs from your blog.  And please...write, speka, and don't be silent any longer.  We need voices.  Many voices.  Many stories.  Many people speaking their truth of living with epilepsy.  And we will, as a group, eventually help change things for the better.  I've seen it happen in other areas of activism.  Change is possible.