Saturday, April 16, 2016

The Others

     No, I didn't find another ecstatic person in the crowd but neither did I try very hard by mingling and chatting people up about whether they enjoy their seizures or not.
     It didn't feel right to do so while standing there next to the SUDEP booth or the one where people posted remembrance notes to family members and friends who haven't lived to tell their own stories.
     In typical Rebel fashion, I arrived late and slipped into the crowd. It may sound like an easy thing to do, but for me, it's work to arrive places early or late.
      My best explanation for today's tardiness is my ongoing battle with insomnia. It wakes me up too early, and my mind/body are then slowed down to the point that it takes forever to get ready, regardless of how much planning I do beforehand.
     It was the same way in my last few months as an autism teacher. To my principal, it was a sign of disrespect, like showing up late for church. (Guilty as charged on that one, too!)
     I wasn't sure by the time I Ubered to the Metro if I would have enough energy to do even the shorter "fun walk," so I wasn't that concerned about being late.
     Nor did it matter to me that I had probably missed the big celebrity, one of the guys from "Pawn Stars." I was there to stalk the experts if necessary, scheduled to speak at the very end of the event.
     Like a true reporter, I wanted answers and was willing to give up the chance to meet other "ecstatics" if I could have a few moments of the epileptologists' time.
     The Uber diver was originally from Somalia, which delighted me because that's a new place to add to my collection of places where "nice" people come from. I asked him about the weather there, and he asked me about the weather in my part of North Carolina.
     Before getting out, I told him the same thing I told my last driver, about how going for an Uber ride is better therapy than the doctors provide for me. "It's the human connection," he said. I gave him five stars and a tip for being human, like me.
     The excitement of traveling on a packed Metro into D.C. on the same day as the cherry blossom parade is contagious. There were kids everywhere, and one little boy kept me entertained by asking questions the entire ride.
     "That's a smart one, asking so many questions," I commented to his mother as she handed his baby brother off to dad for the departure.
      She answered with some big word meant to  impress me that didn't mesh with the rest of her sentence. The little boy must've gotten his smarts from dad, the one who patiently answered all those questions and pointed out things to read along the way.
     The first thing I did once I reached my destination was find the registration/tee-shirt tent. Then, I flipped my shirt around and spotted what I was hoping not to see, the name of the drug company that makes Fycompa.
     There is no way I would wear a shirt promoting that company, but I had expected as much and came prepared. Making my way over to a tree, I took out my purple markers and defaced their label. When the company logo still showed through purple, I brought out black, and that took care of the problem nicely.
     Then, I changed shirts right there in the shadow of the Washington Monument, but did so in the most modest way possible, putting the large white shirt over my purple and white tie-dye, then removing the colorful one underneath.
     Anyone watching me might have thought I was having some sort of "fit," but in reality, I was making myself comfortable. No one was paying any attention, which is how it usually goes.
     I contacted one of my Instagram friends then but had problems with my phone that delayed our messages. We never managed to connect in person; he was heading off to the airport as I was getting settled in.
     My wandering took me to the VNS Therapy tent, and I took their free bag and info. It sounds like a creepy procedure but not as bad as having part of my brain cut out.
     There was a tent for making videos about our epilepsy experiences, where I waited in line reminding myself to breathe and not talk too much while a woman discussed losing a child to epilepsy.
     She was a lot older than me and today was her 9th epilepsy walk, which is almost perfect attendance, as today's walk was the 10th.
     I liked the reporter, ChattyPattyDC, which is probably why I was relaxed enough to talk about feeling like "the only one out there" with ecstatic seizures. It wasn't until the end of the interview that I realized she was letting me talk without prompting and really listening to what I had to say.
     That made me like her even more. She was a smart enough reporter to listen, and her compassionate reaction raised  my hopes that the video might actually get air-time and reach the eyes and ears of another "ecstatic" person out there somewhere.
     Bluegrass music and giant bubbles greeted me as I left the videotaping area and headed over to the stage, angling for a seat near the front. The "Ask the Experts" grand finale was about to start, and I had no intention of going home without at least one answer.
     The format wasn't my favorite type but one I should've expected. We had to write our questions down on cards so the Epilepsy Foundation person could select them and ask for us. The reporter in me was shaking her head, saying, "You wimps, screening our questions for appropriate content."
     The two male experts were local, with connections to the University of Virginia, and the woman was from USC, which she pointed out to be the University of Southern California, not South Carolina. I wondered if there were any offended Gamecocks in the crowd.
     The pediatrician pissed me off fairly quickly, as he began telling people things they should never do alone, like swim. I wanted to interrupt him with stories of all the things I've done alone, both before and after discovering my little spells were actually seizures.
     Before today, I never realized epileptics aren't supposed to take baths, ever, just showers. I almost always take showers unless I'm stressed out and need to relax or after having multiple seizures in one morning. That info would have blown his mind or convinced him I like do dance with danger.
     The reality of it is much less ominous.
     This past winter, one of my favorite things to do after seizing a few times in one morning was to float around in a  half-filled tub of water, letting my own Spotify songs blend in with my son, Ronnie's, rap tunes.
     It was extremely comforting and made me think of the squeeze machine Dr. Temple Grandin designed for herself in college. Something about floating around in the warm water with one rapper blending into the next gave me a brief sense that everything was going to be okay.
     My first question made it through the Epilepsy Foundation person without a hitch. I simply asked why there was so little communication between neurologists and behaviorists/psychiatrists about such issues as insomnia, anxiety and behaviors. The experts said things are getting better in that area, with neuropsychologists and sleep specialists now involved.
     Someone asked a better question than the one I came up with about CBD oil, so it's okay with me that mine was overlooked. I mentioned the F-word on my card (Fycompa) and its black box warning, something a non-epileptic reporter would have only done in a more open forum.
     The CBD question asked whether someone whose epilepsy is being controlled by meds could benefit from its use. I wanted to raise my hand and say, "That's me," but didn't.
     The pediatrician responded by citing a study that claimed people who smoke marijuana habitually become stupid over the course of their lifetimes. I wanted to interrupt and ask what study, where it was published and whether there were any meta-analyses on the same topic.
     I also wanted to ask why he was talking about smoking marijuana to a crowd of people with epilepsy who want to know whether CBD oil can help with seizures and related symptoms.
     And yet another question right at the end of my chocolate mint-coated tongue is how many studies have been done to determine whether  Phenobarbitol, Depakote, Keppra, Topamax, Tegretol, Trileptal, Lamictal, Dilantin, Klonapin or Fycompa make people stupider over the course of a lifetime. (Remember, I have been taking a drug that could've made me fat and "mentally slower" for most of my adult life.)
     He said CBD must be used at a high concentration to be effective in controlling epilepsy, and there are too few studies to know whether it is safe or not at such levels (as opposed to Fycompa, with its very limited but scary human studies and tendency to make rats and monkeys do weird enough things to earn it a Black Box Warning from the FDA.)
     "So, the answer is no, for someone whose seizures are controlled by other meds," he said before explaining that laser surgery and other new procedures are continuing to provide better options than ripping someone's hippocampus out to prevent further seizures.
     Someone asked a question about women and epilepsy, so the female took over to discuss connections to hormones and periods and such. I decided to take a break at that point and stand beside another cherry blossom tree, where I could suck down a cigarette, my own quick fix and the easiest "bad" drug to purchase anywhere on the planet.
     My mother and I figured out long ago, before we even made our first visit to the general practitioner's office in 1980-something that there was no connection between my seizures and periods, so I simply listened from afar.
     I sat back down next to a little girl with a painted face who was playing with a mermaid doll. A couple of months ago, it would have been dangerous to let my mind wander back in time to my own mermaid doll, Shelly Sea Wee.
     Doing so could have sent my brain on a trip into the past that it didn't want to return from, but it was safe to do it today. I thought back to how I liked to pretend to be a mermaid when I was a little girl, swimming underwater like my Aunt Gaylene taught me to do at the city pool.
     When those mermaid dolls came out, I was a bit old for them but insisted on having the one with brown hair, which was harder to find than Sandy, the blonde, who starred in the T.V. commercials.
     Remembering how the mermaid friends played underwater with their seahorses caused me to realize the irony of a little girl with real horses in her back yard pretending to be under the sea with Shelly and her fishy ones.
     The Depakoted, grown-up me started paying attention when the pediatrician began to talk about
temporal lobe epilepsy versus "every other kind" of epilepsy. It came up often when he talked about surgery and isolating which parts of the brain need to be zapped with lasers or obliterated completely.
     When he described the hippocampus as being shaped like a hot dog, I stopped considering him to be such an epilepsy expert. My research online verified the description Dr. S gave me last summer of the hippocampus as indeed being very similar to a seahorse in its shape.
     If I had a broken hot dog in my head, I would be walking around with an Oscar Mayer wiener necklace and not a silver seahorse.
     The female expert was my favorite of the three because she talked about auras and how not all seizures can be detected on EEGs. She told about listening to patients describe bubbles rising in their stomachs, panic or funny smells, and that tells her what part of the brain the seizures are coming from.
     That's what my best neurologists have done. They simply ask me how it feels when I know a seizure is about to happen and keep listening until I reach the point of saying the seizure itself feels like something that is too intense to adequately describe in words.
     The other expert didn't get as much time to talk but had some interesting numbers to offer, which was the only moment I reached for my purple pen and diary/journal/reporter's notebook. Names and numbers must be written down if I want to get them right.
      He emphasized the importance of genetics and knowing as much as you can about not only your seizure type but where the epilepsy originated in your family tree. According to him, the old way of thinking only attributed five percent of epilepsy cases to genetics but now doctors believe the actual piece of the pie is closer to 40 percent.
     "It's important to know your genetics so you can make the right medication choices," he said, adding that he expects the role of genetics will be considered even greater in three to five years and more so by the end of the next decade.
     The example he gave used my beloved Depakote and stuck in my mind with only purple scribbles for notes. He said Depakote can do great harm to people with a certain type of epilepsy but is given to children as the drug of choice for another. The answers can be found in one's genetic makeup.
     He also was the one who most encouraged everyone to try and participate in research studies, not only those of us desperate enough to try anything to improve our quality of life. That bit of information came at the very beginning, where it belonged, before people catching flights out of town or exhausted from walking had time to make an early exit.
     After the experts finished and left the stage, I headed toward them, like the reporter I am, always peeking behind the scenes for one last glimpse before the final curtain closes. I made my way to the female doctor and shook her hand, thanking her for taking the time to travel across the country to speak.
     I also asked her to continue her important work in educating women on how epilepsy can affect our lives, and she said, of course she would. Of the three, I hope that maybe I made a connection with the one who seemed most likely to listen.
     That's all any of us want, really. A doctor who knows what she's talking about but is willing to listen before offering advice or reaching for a prescription pad. When that happens, there is always the possibility than the experts might learn something from us for a change, perhaps even get a new perspective on what it's like to experience epilepsy from the inside.