AES Day Two: A More Complete Picture of Seizures and Their Implications

[Lisa Boylan]

I attended the 9^th annual Judith Hoyer Lecture in Epilepsy this morning at the 65th annual American Epilepsy Society Meeting. Judith Hoyer, the late wife of Congressman Steny Hoyer (D-Md.), was an active board member of the Epilepsy Foundation. The Hoyer lecture, named in her memory, aims to highlight advances in epilepsy research for both the public and researchers.  The lecture is supported by NINDS and several voluntary organizations, including the Epilepsy Foundation.

 

Walter Koroshetz, M.D., from NINDS, gave opening remarks pointing to NINDS and its newly-found commitment to funding cutting-edge research, such as a flexible brain implant that could one day be used to treat epileptic seizures. His remarks led to an introduction to Dr. Schachter, who has long been committed to responding holistically to patients, i.e., responding to all aspects of a person with epilepsy, not just the physical symptoms of the disorder.

 

Schachter emphasized looking into the day-to-day aspects of epilepsy, such as the experience of seizures from the point of view of someone having a seizure and how artwork and music can inspire research because they underscore the perspective of people affected by epilepsy.

 

The slideshow of artwork he has collected over the years by talented people affected by epilepsy, and an excellent accompanying live concert at the Hoyer Lecture, only underscored the importance of taking the whole person into consideration and—more importantly—recognizing what they can achieve; what they feel; and who they (really) are.

 

He talked about what somone experiences while they are having a seizure—probably the last aspect many of us think about. He said that the subjective seizure experience influences what it means to have epilepsy because everything from the premonition of a seizure (aura), to the post-seizure state, represents levels of anxiety about being in public. He spoke about “perceived stigma,” i.e., what the person with epilepsy feels others think about him. As with most of us, the perception is usually much worse than the reality.

 

He showed a photograph a person with epilepsy took of a clown, in full make-up and bulb nose, in the middle of a crowd. The clown was meant to represent what the person with epilepsy felt like in public, however the interesting part was, the surrounding group of people, going about everyday life, had no reaction to the “clown” in their midst.

 

Dr. Schachter introduced Cynthia Folio, a composer whose daughter, Lydia,  has epilepsy. Ms. Folio composed a musical portrayal of her daughter’s seizures. The piece, When the Spirit Catches You*, was performed live by the Grammy-nominated Relache Ensemble.

 

Cynthia and Lydia took the stage. Lydia wore a beautiful blue dress with tulle and sequins. Her mother introduced the piece. The ensemble took the stage and warmed up, then they broke into an intense, sometimes dischordant, seductive jazz-like section that had a rising, melodic piano intensity with violins. Lydia’s recorded voice accompanied the music, along with artwork: My whole body spins to one side. More jangling musical accompaniment and then, I feel tightness in my chest, then the intensity of the music subsided, followed by a sad, mournful, plaintive period with lots of elements at odds with one another and then a high-pitched, insistent sound. Lydia’s voiceover said, I hear a buzzing or humming noise.

 

For those unique moments during the performance, everyone in the room was responding to a seizure—either visually, musically or aurally--through Lydia’s accompanying descriptions of a seizure in real time—a time many of us will never know, but one far too many experience every day. 

I attended several more sessions today--more updates to come! 

Check out epilepsyUSA contributor Gordy Slack's blog, as well as my wonderful colleague Shelly Williams' excellent blog on the event.

* When the Spirit Catches You refers to a Hmong expression, which is, "the spirit catches you and you fall down." The expression is meant to convey both the burden of epilepsy, but its spiritual gifts as well. Anne Fadiman wrote an acclaimed book called The Spirit Catches You and You Fall Down, documenting  the story of a young Laotian girl with epilepsy and the tragic clash between ethnic Hmong spiritual beliefs and the Western medical establishment. 

[Monica]

I'm glad I went to.this, I wish there was some sort of cost break for patients so I could have gone to more than just the symposium.

[Lisa Boylan]

I know!! Really unique and so powerful.

[MrsLinkgetter]

This was such an amazing lecture!