Tuesday, March 28, 2017

The National Walk for Epilepsy, Revisited

     Saturday was a Mary Poppins kind of day...practically perfect in every way. I experienced almost every range of emotion and connected with people in person, going into D.C. twice.
     When the day started, I was both nervous and excited about the Walk for Epilepsy and about my first assignment as a reporter in a long, long time.
     Then, at the last minute, I said yes to another deadline because it was an opportunity I couldn't refuse.
     Faye, an award-winning blogger in London, asked me to participate in her blogging marathon in honor of Purple Day. The topic was positive things about epilepsy, a favorite of mine. (See previous post.)
     As I got ready for to head into D.C. that morning, I was both excited about the adventures ahead of me and nervous that maybe I had agreed to do too much at once. Either way, I was motivated to get out and see for myself.
     Right after getting dressed, I had a mild seizure that improved my mood immensely but didn't do anything for my memory. I almost forgot to wear my little medical charm before getting in the Uber to take me on my way.
    The driver was originally from Pakistan, and knows my neighborhood because he worships at the mosque around the corner. I told him I had attended an opening ceremony at another mosque a couple of years ago when I was teaching English to adults.
     Both of us agreed that we have similar beliefs, and I told him I wish everyone else could see it that way and stop fighting about it. The conversation lifted my spirits so much I barely cared when I arrived at the Metro to discover the train was behind schedule and I had to wait for half an hour.
     The train was packed with cherry blossom tourists. I sat next to a tall, young guy who was so handsome it was hard not to stare. His white cane told me he wouldn't have seen, but still, I didn't.
     I looked up to see if the woman with him wanted my seat, but she chose to stand on the other side and explain various stops and how to maneuver through the Metro system.  Her advice was good, so I paid attention.
     At one point, she asked if he could tell the difference when the train suddenly filled with light after being underground. He said that he couldn't. I tried to imagine that and then wondered: What things can he "see" that I cannot?
   
     Many of the events at the epilepsy walk were winding down by the time I scooted around tourists on my way to the Washington Monument. I was beginning to fear missing my Twitter buddy, Tracy, but still couldn't resist stopping to take pictures of the more comical sites in front of the White House.
     My postictal bliss continued.
    I made it to the event in time for the expert panel, quickly scribbled my question on a piece of paper, and waited. It was hard to pay attention because I was so anxious to see what the response would be. When I heard my question being read aloud, my heart went, "THUMP-THUMP-THUMP!" with every word.
      I included my seizure type and age at diagnosis, the euphoria and my wish to control it rather than be cured. I even included my age to let them know how many years of experience I have, that I am not a novice in this field.
     "Am I the only one?"
     That was my question this year.
     The long pause after it was asked and the way the four doctors looked at each other was my answer. Yes, they had heard of my seizure type but none had actually treated a weirdo like me. When they began to use catchphrases like "aiming for zero," some people in the crowd began making sounds of disgust, as if I had suggested we all toss our pills and seize the night away right there on the Mall.
     I waited until the experts were answering another question to exit. Still, I was obvious enough to ensure anyone like me, hiding in the crowd, would know there is no reason to be ashamed.
     The people at the Talk About It! tent calmed me and listened as I explained what I had been trying to say and how I now felt more frustrated and isolated than when I arrived. They gave me time to get myself composed before videotaping and even allowed for a second take on the ending because I was trying way too hard the first time.
     By then, I was ready to face the experts again and took a seat in the front row.
     The doctor from southern California was back this year, and I wanted to listen more to what she had to say. Her best tip involved relaxing by taking deep breaths like an opera singer. (I already tried it and like it much better than those "calm, soothing breaths" most people recommend.)
     Just as the panel concluded and I stood up to leave, someone called out my name from a few rows back. It was Tracy! We hugged like old friends even though it was the first time we had ever met in person.
     I walked with her back to her hotel, mad at myself for not planning better, as she was about to check out and head home. She told me more about her daughter, Amber, who died from sudden unexpected death in epilepsy (SUDEP) last fall.
     When we arrived at her hotel, I hugged her again, at least two more times, extra tight, to keep me strong until next year's walk. Then, I headed to the nearest Metro station for another long wait.
     Only once while I sat there did I wonder, "What if it happened now? What would I do?"
      I pictured myself, shuffling along with the crowd, knowing the way because I've done it so many times before, and had no doubt I could do it and find my way back home.