Epilepsy research excites me. Thankfully, after a temporal lobe resection, I can get excited without worrying so much that it causes a seizure.
I’ve had epilepsy for most of my life, and now I have made it my career and my purpose to bridge the unnecessary, unproductive communication gaps between clinicians, scientists, patients, and caregivers.
My love of research and science
I’ve always loved the sciences. In fact, I’ve developed a particular interest in neurology and neuroscience. Over the last few years I’ve been able to slip gently into my passion of proactive communication regarding epilepsy. Stepping outside the role of patient and into the role of advocate can be really tough to do but there is an incredibly inspiring and remarkable world of research in epilepsy and its associated afflictions.
Talking to cool neurologists, scientists, and researchers who want to share their work with us truly provides a sense of logical hope. There is a real, meaningful purpose to their work, and I wanted to create a platform to hopefully spark some hope in others as well. It was from this hope and knowledge that Epilepsy Sparks was born.
Dr. Dana Simmons, Brain Art, Neuroscientist, Chicago, USA
It’s hard to keep track of all the terms we’re “supposed” to know. Understanding I wasn’t alone in remembering all of the definitions and acronyms, I created the Epilepsy Sparks glossary.
Many of us want to know what clinicians and scientists were up to, so I created the Epilepsy Sparks Insights podcast, which features interviews with inspiring leaders in the fields of epilepsy, epilepsy research, neuroscience, and epilepsy care.
I confess I’m frequently thinking, “OMG, I feel so stupid!” when I meet so many beautifully inspiring and intellectual people, but I work on reassuring that inner voice we can all learn more. These people are giving us hope for the future. They see the value in communicating with those affected by epilepsy outside of their intellectual, clinical sphere. We should invite them into ours.
The Inside Scoop
I couldn’t be the only person valuing the empirical method, right? We need to have doctors and scientists help put answers to our questions in laymen’s terms. Experts are featured on the Epilepsy Sparks Blog. Through this process, I discovered there is an incredible number of professionals contributing to the treatments and care for people with epilepsy, yet we aren’t always aware of these impactful contributors. To help bridge this gap, their information is also included in the glossary.
Getting the Word Out
I’ve always been open about my epilepsy, so I started doing speaking engagements. I enjoy imparting personal and professional knowledge and experience of the worlds of neurodiversity, mental health, and diversity and inclusion. Many people are interested in learning more, and I enjoy engaging with an audience as a part of the incredible value of it long-term to all society.
Thinking long term
Ultimately my goal is to create positivity around epilepsy. I was fed up with the negativity forced on us by epilepsy, so I wanted Epilepsy Sparks to be constructive and positive – like “The Happy News of Epilepsy!” It’s been refreshing to collaborate with organizations sharing a similar ideology, like Living Well With Epilepsy. By working together, we achieve even more at the community and international levels.
We all have different labels and we all have different dreams, aims and ambitions. When it comes to epilepsy, equality, education and employment, it is my firm belief that we are all allowed to dream regardless of abilities or disabilities.
Lawyer with Epilepsy
I am a practising barrister (lawyer) and mediator living in the West of Ireland. I have been an advocate for epilepsy for as long as I can remember because I am an advocate for human rights, dignity and respect. I was diagnosed with epilepsy around 8 years old and they linked the epilepsy to my premature birth as a baby.
My epilepsy has been a journey for me with adverse drug reactions leading to Steven Johnson Syndrome. The reason for writing the blog to take part in a conversation as a woman with epilepsy. I would like to explain how you create equality and that is through education and sharing information with others. Equality provides for education and then to employment.
Careers When Living with Epilepsy
So what can you do as a person with epilepsy.
Can you be a surgeon or a doctor? Yes
Can you be a Nurse? A lawyer? A doctor? A Pathologist A psychologist? Yes
An Actor? like Danny Glover Yes
A Poet? like Emily Dickinson Yes
A singer? like Susan Boyle Scottish singer Yes
A judge? like John Roberts, Chief Justice to the US Supreme Court Yes
In Ireland, there is a great discussion of the Direct Discrimination and the Indirect Discrimination. The issue of Disclosure is most significant element to a person with a disability. The form filling exercises completed by all persons on application for a job and the inherent difficulties with disclosure of the fact of a medical condition. If a person has to disclose their existing medical condition of Epilepsy then should a woman when being interviewed have to disclose the fact that she is pregnant?
The Irish legislation defines discrimination as treating one person in a less favourable way than another person based on any of the following 9 grounds:
Gender: this means man, woman or transsexual
Family status: this refers to the parent of a person under 18 years or the resident primary carer or parent of a person with a disability
Disability: includes people with physical, intellectual, learning, cognitive or emotional disabilities and a range of medical conditions.
Disclosure of Epilepsy in the USA
As a person in the United States you should know your rights and know what the protections are for you as a person with epilepsy in a wide variety of services. Even though there are laws to protect people with epilepsy, there is still discrimination in real life.
If you are a person with epilepsy do not let the condition limit you or stop you in your dreams. I would ask you to take part in education and to also engage in employment because your life is your own. The basic human need is for a person to belong and take part. I am a human being with epilepsy and I am also an Irish woman writing about our experience so that you can know that the discrimination is something we are still fighting.
I would like to say that I have epilepsy and it will not limit my ability to dream.
“Saying nothing… sometimes says the most.” – Emily Dickinson, a poet with epilepsy
Thirteen years ago, my husband and I, then ages 51 and 38, respectively, decided to grow our family beyond the two of us and a cat. Our tiny, urban apartment, our advanced ages, and my epilepsy were issues we were determined to manage exclusively with experts in each field.
Epilepsy and Pregnancy
The first call after our Big Decision was to my epileptologist’s office. At this juncture, I was uncertain about almost everything. How would I choose which maternal fetal medicine (MFM) specialist had demonstrated expertise in caring for women of advanced maternal age with epilepsy and their developing fetuses? Anxiety mounted into all the hypotheticals. Yet by the day of the appointment, it turned into reality with a two-parallel-lined positive pregnancy test. The questions kept coming, and so did the fears. As many women both before and after me, I entered the exam room full of emotion and with a deep need for answers.
Q: What about sleep deprivation and night feedings?
He told me we needed assistance in the night and support so that I could sleep during the day. Of that he was certain. And that was where the certainty seemed to end.
Q: What about antiepileptics?
Should I expose my child in utero — and then possibly postpartum — to the drugs that sometimes affected my word retrieval and cognition? We discussed the available published literature as well as anecdotal observations about what other women in his practice were choosing. He said I would need to conduct my own risk-benefit analysis, but without reservation I needed supplemental folate. At least those folic acid data were conclusive.
Q: What about the risk of increased seizure frequency during pregnancy, or seizing during labor and delivery?
Maybe, yes, on both accounts, he surmised. Increasing seizure frequency was observed in several pregnant patients, but he could not quantify the percentage. This major concern for fetal development and birth injury echoed what I had read and heard many times. Mounting ambiguity was painful.
Q: What about nursing?
He advised I speak with the clinical pharmacist at the Comprehensive Epilepsy Center, who had a different opinion than the lactation nurse, who had a different opinion than the MFM specialist. “Future studies are needed to clarify the risk,” stated the published evidence in 2008.
Making a decision
When I left his office, I felt so confused and second guessed every decision. All I could see were multiple risks for significant developmental delays and increased seizure frequency. I noticed the infant formula at our grocery store had dust on it and concluded I was the only one in our neighborhood considering such a maligned option. Depression started to form a slight layer on my anxious soul. How could there be so many gaps in evidence and, in turn, how do pregnant women with epilepsy make informed decisions to optimize infant health outcomes?
Weeks later I ran into our downstairs neighbor and shared the news of my pregnancy. She gleefully asked about my birth plan, while sharing her beautiful vision for hers. When I relayed that my line items included supplemental oxygen and an epidural, she seemed confused by my lack of midwifery and labor/delivery musical selection preparation. I felt I lacked the glow of a first-time mother-to-be and and attendant guilt for failing my developing child.
In many conversations since those days with both neurologists and expectant mothers living with epilepsy, I am aware that even with the publication of new guidelines and evidence, pregnancy remains a challenging and uncertain time. And while 2020 was not cause for much celebration, we can praise the landmark study published in The New England Journal of Medicine, which narrowed a major evidence gap for those desperate for high quality research in personal decision making.
The multi-center, prospective observational study found that during pregnancy and the peripartum period, women with epilepsy who were monitored carefully by their physicians did not have an increased seizure rate compared to women with epilepsy who were not pregnant during a similar time period. Thankfully, after all these years there is reassurance for those concerned about significant changes in seizure frequency during pregnancy. For so long women living with epilepsy were counseled about an increased risk of worsening and diminished control and, understandably, made major life choices accordingly.
The Joy of Motherhood
This month, my vibrant, inquisitive, and good-humored daughter turns twelve years old. The overwhelming joy of being her parent is in inverse proportion to the terror of gestation and those early months – and early years – when we were on high alert for any developmental consequences of choices made with a dearth of evidence. Of this I am certain.
I am also certain that if you are struggling now, please remember you are not alone. Ask your obstetrician or local Epilepsy Foundation for a support group or therapy referral.
I got this letter from my brain yesterday. The penmanship was atrocious. She must have been drinking. I think she may be under the impression that she is a young Elizabeth Taylor. You can almost picture her staggeringly violet eyes staring you down as she speaks:
My dearest love. Yes, I know it looks like a real mess in here right now and I know my writing you this love letter may seem a bit unorthodox in light of the situation but, darling, I couldn’t resist. The temptation in me, across my every axon and dendrite, was too powerful. I know you feel betrayed by me, by my electrical taunts, by what seems like faulty wiring between my lobes, but my love for you is boundless.
It’s complicated, but I have evolved and adapted for more than one hundred thousand years across one hundred billion cells to keep you safe, to keep you interesting, and to keep evolving. In truth, I am a secret radical—like Jane Austen or Emily Dickinson. With more than 50 million people worldwide living with epilepsy, one in ten people will develop seizures in his or her lifetime.
These people not only need practical, prescriptive advice for surviving a life with seizures, they need to know how to make meaning of seizures, of epilepsy, and of life with it.
I am more of a process than I will ever be a specific organ with a function, and because of that, I am always becoming something new, something else. Writing about seizures is like writing about the soul. It’s forever elusive. Every time you think you’ve captured it, it shifts form or disappears altogether.
While we may indeed have to respect some of the cards we’ve been dealt, we can still re-craft the story—to laugh a little. Or a lot. You are never beholden to a sh*t narrative, my dearest love. Try to take that very same richness and intensity of feeling that comes with this electric condition and apply it to every moment in between and ahead.
If you feel you have been on the outside of your life for so long, like an uninvited guest hovering at the periphery, and that you can never claim it back, I am writing to tell you that you are wrong. I, your brain, was wired to write multiple futures. When I send you messages that say, “Stop, go back!”; or, “Don’t do this! This is dangerous and it will involve pain”; or, “You will get hurt,” I need you to listen and hear me and know that I have evolved over all this time to protect you and to perpetuate your species. Every problem I present you with is an adaptive piece to propel the story. Your story. The one you are writing at this very second. Let this new narrative heal you. Let it heal others. Make them curious and defy their expectations however you choose to. Who decides who gets to be the good epileptic anyway?
Now, as your brain, I feel I have a duty to inform you that I have this fantasy that all the nerds and weirdos of the world will read these words here and, bit by bit, even in the reddest, most singular, and closed-minded of rural backwater places and towns, they will grow into radical neurodiverse sleeper cells. Think of them as subversive little tribes of epileptics, autistics, anxious depressives, and other neurotypes all disrupting the stigma. I say this because I want you (and all the disabled) to experience that odd, rare spark of joy; to be curious about what it means to be electric; and to understand how you can take something that should be really, truly awful and rewrite it to reflect joy.
Words can spark such fires, and we are only just learning how to torch the ground rather than ourselves.