When a Loved Event Becomes a Trigger

My hometown has a wonderful, well known early fall art and music fair called The Black Swamp Arts Festival. The Fest is nearing its 25th anniversary, and almost from its inception, I felt involved and connected with it.

One of its very first years, after I'd transferred to the state school back home from Ohio University, I was working part time at a clothing store downtown which was right in front of the Main Stage. The parking lot was closed and filled with long picnic tables and a beer garden; food trucks had set up and the scent of fried delicacies wafted in every time the glass doors opened. Even upstairs, we could hear the bands playing. My boss happened to be the mother of the lead singer of the first band, and we all stood at the giant back window looking out over the parking lot at all of the dancing, strolling and eating attendees. I believe we danced too. I'm sure when I got off work at 8:00 I met friends and stayed late. I was 21.

Four summers later, I had landed a job at the hippest spot in town. The storefront on Main Street was a coffee shop (our own roasting company was around the corner) and used bookstore and gathering place of everyone who was anyone. Being a barista in this type of shop was much like being a bartender, and as night manager that year I finally slipped into the life that had always been waiting for me. I found myself, and my husband, and all my friends, and my place in the universe, and the Black Swamp Arts Festival was a big part of that. All of us at the shop were required to sign up for one extra shift that weekend every year so that we would always be fully staffed, and lines would stretch out the door and all the way down the back hallway. The owner of the shop had been one of the founders of the Festival, and he was also the Performing Arts Committee chair, so all year he would play CDs sent by bands and let us know who was being booked. Invariably, these groups were more bluegrassy than most of us would wish, the year he got The English Beat and The Fixx being a fun 1980s exception. When we weren't behind the counter, we would wander around the streets which were filled with gleaming white art fair tents; or volunteer in the children's art and activity area, munching kettle corn. Favorite food items for most people were the beef tips and alligator on a stick, though I never sampled either.

John's volunteering with the Performing Arts Committee led to the development of his own music stage. Local and national alternative or electronic bands would play all day Saturday and all afternoon Sunday in some out of the way location, and our friends and families would spend all day at what we considered a sort of headquarters for the cool. I had X, stopped working at the coffee shop, began working for Parks and Rec, and our lives were changing drastically, but john's stage was a happy constant. Every year I would insist on having the whole weekend off, much to the irritation of my co-workers. When John's stage closed up for the day, we'd head to the Main Stage, where we had backstage access. Festival weekend was like Christmas.None of this is to say that migraines weren't affecting me during the Festivals of the past; they always did. Even before I was chronic, my life revolved around migraines. There were many years I would have to miss big chunks of the day or night, or if it were too hot I would choose not to walk Main Street in the sun to look at the art. The alternative was to be around loud, sometimes dissonant music, but still, John's stage area was a safe haven. Many of its years it was held in an old theater, or a quiet bar (in between musical acts, anyway), and I always had a place to retreat when stimuli became too intense.After Zo was born though, I began fighting my chronic daily status tooth and nail. Soon afterward John's stage was discontinued after eight years. We were unhappy about that, as it felt like something precious was being taken away from us, and I was so sick, besides. Gradually, we got more and more separated from the Festival's inner workings. We took a huge leap and for varying reasons both quit our jobs and pulled our retirements, I was in bed more often than not, and every day was a struggle. In September 2014, when the Main Stage opened late Friday afternoon, I didn't feel well enough to go. As darkness fell, I could hear the bands' clang and smash drifting from downtown, blocks away. Tears slid out from under my ice pack.The next morning, my headache still lingered. I took more medication and told myself that I would be fine by noon, and I would join John and the girls downtown. By the time they all came banging back into the house with their decorated hats and sticky faces, I was groggy, depressed, and still in pain. The sun was bright and hot so I decided I would try to go when the sun began to go down. But by that time, the idea of loud music and crowds of people seemed just as impossible to navigate as the sun, especially without the backstage access. My heart hurt. What had happened to me, that a weekend I looked forward to all year had become impossible to even attend? Formerly, while migraines were always an issue, I at least had John's stage, where besides just a calm place of my own to sit down, I would have a cooler of bottled water and snacks, and things for X, and later the new baby Zo, to occupy themselves with. But without that, and with my nearly daily migraine status, I was losing yet another significant part of my life to my illness. That year I spent only one hour at the Festival on Sunday afternoon, with the girls and a friend, and though my pain had abated, the sights, sounds, and smells were just too much.In 2015, a close friend of ours who'd left town visited, which made things a bit more fun, and we also had extra help with X and Zo. I wasn't able to spend too much time at the Festival, but we did get to walk around both days, tie-dye tee shirts, listen to some music, and talk to people. It wouldn't take long though before I was into full aura and prodrome. I had on my TheraSpecs, carried my bottled water, sat and rested in the shade when the throngs of people became too much for me. Still, none of those preventive measures stopped the migraine. And since there is never anywhere to park downtown, we had to walk the blocks home or to wherever we'd left the car.This year, my migraines are back to a chronic that is rarely daily. I sometimes even have a few days in a row without a migraine at all, though I usually still have fatigue, allodynia, and random other symptoms. I was optimistic that I might be able to venture downtown to the Fest, particularly since the arts reporter for our independent online news journal was going to be live blogging, and I wanted to contribute. But Friday X had play practice, and Saturday Zo had her first Nutcracker ballet rehearsal. It rained all day, and that evening it cleared up but I was scheduled to work at the nano-brewery. “Tomorrow, I will do this,” I thought. I took X to her horse lesson in the morning and it was an unbelievably beautiful day, sunny and 75 degrees. And I thought about how the rain the day before would cause everyone to come out today. And I thought about how the sun felt hot. Even though it would be the very first year I wouldn't set foot into the Festival at all, and it broke my heart, I decided to send John with the girls to the kids' area and I would drive to the nearby ice cream shop and buy myself a sundae, and enjoy it in the silence and cool, alone.I wasn't even finished by the time the three of them poured back into the house, with decorated hats and sticky faces, exhausted after just an hour. The lines for the activities the kids wanted to do were too long, the crush of people just too much. “Aw, you got ice cream!” Zo pouted. “No fair.”In writing this piece, it becomes clear to me that my loss of The Black Swamp Arts Festival I loved occurred for reasons other than just my illness. Time always moves forward, and things change. But the fact that I can't walk downtown to enjoy it for even an hour with my family... it is another piece of normal life that migraine has stolen from me.Do you have any special events or places you used to enjoy that you no longer can due to migraines? Feel free to share in the comments.

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