Dec 10

Dec 10 Sparkle + Hope

This past weekend I had the opportunity to attend the American Epilepsy Society (AES) conference, an annual multi-day meeting of epilepsy clinicians, researchers, non-profits, as well as pharmaceutical and device companies. It is basically a coming together of the who’s who of epilepsy science. I attended in 2018 as a newly minted CURE epilepsy board member and was blown away by the sheer size and scope of the conference. We’re talking THOUSANDS of like-minded people with epilepsy as the driving force behind their life’s work.

…I know, right?!

I’m not sure I can properly explain the energy that comes from being surrounded by an entire community of people who ‘get it’ from, literally, a cellular level on up. Between Adelaide’s passing and Covid I had not been able to attend again until this year and I wasn’t quite sure what it would feel like to walk among this community again. I prepared myself for any and all emotions to arise: from deep grief to fiery frustration, from unsettling jealousy to an unnerving disconnect. What I’m not sure I expected was the passion-fueled joy I felt at sharing meeting tables, meals and moments with friends, colleagues and new acquaintances alike.

The highlight though, was being able to stand at a lectern in front of 200 clinicians and researchers at a CURE Epilepsy hosted cocktail reception to thank them for their work and commitment to epilepsy research. I walked up to the podium with a clear head and calm heart, running through the outline of my prepared remarks in my head, but when I opened my mouth to speak my voice wavered and a familiar pressure formed behind my eyes.

It’s certainly not the first time I’ve emotionally broken down while addressing a group about epilepsy but this time caught me by surprise. In hind sight, it shouldn’t have - this was the first time I had addressed a group of this size - in person - since Adelaide passed away.

The truth is, once you get through the basics: food, health, housing and love, there are few things I am more grateful for than epilepsy researchers and clinicians. Think about it, who chooses to become an epileptologist? Someone coming out of medical school could make significantly more money as a dermatologist or plastic surgeon. Or they could work with an organ like the heart that is significantly better understood than the brain. But these incredible individuals choose not just neurology, but epilepsy specifically: a disease with no cure, entirely misunderstood, and where up to 40% of people diagnosed will be resistant to all medications and treatments.

Then there are the researchers. In speaking with them I know that many are drawn to this space for some of the exact reasons that make it an unappealing specialty for clinicians. They see an opportunity for discovery, significant advancement and yes, even cures.

When I first began speaking to researchers, their evident excitement surrounding my daughter’s medical mysteries was unsettling. I would catch the sparkle in their eye and want to scream back, “how dare you find her suffering intriguing! How dare you draw ambition from our desperation!” Eventually, I learned to not only accept their enthusiasm but to embrace it. Science couldn’t move forward without them and if Adelaide’s unknowns could be their motivation then what was the harm in that?

But at a conference like AES, I have found that I can push a researcher’s motivation even further. So, that is what I did from that lectern last weekend by letting my voice crack and allowing the tears to fall.

“I have never felt more hopeless than when holding my daughter during a seizure... Epilepsy eats away at our hope leaving us desperate, looking for any answer or solution that can make the day just a little bit easier. ”

I paused waiting for the jawbreaker sized lump in my throat to subside. It wasn’t budging, but I had more to say…

“Even two years after hope for my daughter was extinguished, I still find hope for our epilepsy community in your laboratories. As an epilepsy mother please know how much your work is appreciated, how much you: epilepsy clinicians and researchers, are appreciated. When there is nowhere else to turn, it is the knowledge that science will push forward that keeps patients and caregivers going. YOU are the people who are pushing science forward. YOU are our hope.”

What I didn’t say out loud was the slightly selfish reasoning that hides behind all of my current advocacy: I am just as desperate for epilepsy advancements today as I was when Adelaide was alive. Clearly I can’t change the past but what if Adelaide’s story can help change the future. I NEED her suffering to mean something, for her life to have not been in vain.

Perhaps, as these scientists sit in their labs writing grant proposals or analyzing lines of blind biometrics, having a patient face to put to their work is the motivation they need to keep that bittersweet sparkle in their eye. And in that way all of our gone-to-soon epilepsy warriors can live on in their work.

So, to all the epilepsy clinicians and researchers out there: we see you. Gratitude doesn’t come close to encompassing what we feel for the work you do. I hope you know that you are being cheered on by 65 million families across the world.

To all my epilepsy club members reading this: I encourage you to reach out to the researcher who worked on that medical white paper you read during your last 3am Google dumpster dive, or to the well-informed scientist you follow on twitter - let them know what their work means to you. Let your loved one’s face be their motivation to keep driving their research forward.

We are in this together.

We are their sparkle and they are our hope.