Llamas
My fibromyalgia and I converse all the time. It is usually one-sided with my fibro doing all the talking. “You will listen to me tonight.” On this Friday night, the course of the conversation would expand. I would speak back to my pain—like “speaking truth to power.” I would learn new things about my abilities, or lack thereof, on this Friday night.
I could smell the searing flesh of the turkey legs before we even entered the fair. As a vegan, the meat is my least favorite part of the fair. But my favorite cover band was playing—Dead Man’s Party, an 80s cover band of Oingo Boingo, formerly known as the Mystic Nights of the Oingo Boingo for true fans. Now, I’ve seen Dead Man’s Party four times before, and it is one constant dance party for old washed up 50- and 60-year olds, like myself. I mean, what do you expect from Fair entertainment? But, this year, the constant dance party was in question. This year, fibromyalgia entered my life. “Why did you have to come at all? Why me?” But I was determined to see my favorite cover band. How different could navigating the fair be with fibro, I asked myself. But I also spoke to my fibro. It is a part of me now—with its own agenda at times. “Can we really do this?”
The first challenge was attempting to find disabled parking. Even though we got there just one hour after the fair opened, all of the disabled parking spots were taken. Many had no placards.
Assholes.
So, we walked. And we walked. We made it in and my wife, Dana, NOT a vegan, was elated to find a brisket barbeque burger. I felt the pain creeping into my body as she looked for napkins. I wanted to see the As Seen on TV products that no one really buys–the 20 minute teeth whitening and other wares and bobbles–but the idea of walking through the Carnival of Products tent with my leg pain seemed more like the Carnival of Doom. “Not now, fibro, not now, please.” We opted for the farm animals, instead, which were nearby. Dana was hoping to see a large array of the cows, pigs, etc., but I was secretly pleased that this year they only had llamas; this way, I didn’t have to walk through all four large barn yards. I felt guilty about this. “You cannot make me feel guilt.” I cannot answer as to why the fair only had llamas. This question still vexes me.
But enough about llamas, it was onto the carnival games. We were trying to win a squish mallow plushie for our grandson. (Google it.) We walked by the games that we know are rigged. I watched a documentary once: the shoot-up the star with a machine gun, the rings around the Coke bottles, and the break a plate with a heavy ball. We came around the corner to the water gun game. Every time, there’s a guaranteed winner, so we’d put our money there. Dana wanted me to play for the win. How could I tell her that I was afraid my legs would spasm mid-game, when trying to sit very still, and that my water gun would go 90 degrees south? “Okay, fibro, you win this one.”
Feeling a bit discouraged, but determined to have a good time, we hit up a few more food vendors. My wife likes to say that “I watched her eat her way through the fair.” A fresh grilled corn on the cob dripping with butter and hot sauce, followed by a Dole whip, also covered in hot sauce were the winners.
It was now time for the show; the moment of truth. How would I feel not being able to dance for two hours straight? How would I feel sitting down at a concert, and not standing the entire time? “Fibro, don’t take away my joy. Not tonight.” For someone who has been to thousands of shows since the 70s, that is a cardinal sin.
The lights went down and the curtain went up. I heard the familiar xylophone from one of their hits, Gray Matter, and the crowd leapt to their feet, including me. I made it through the song! I can do this! Unfortunately, a few songs later, the pain was too excruciating. “Fuck, you, fibro.” Of course I had a tall man sitting in front of me, when I sat down. Why does that always seem to be the case. Thankfully, he left. As it turns out, I was able to dance to about three songs of a 100 minute setlist. I didn’t exactly conquer my fibro. But I also didn’t fail. “Did you hear that, fibro? I didn’t fail.” My honey and I made it to the fair, we walked a lot, and we had a blast. Yes, it may mean that we need to go back multiple times to see everything, and not feel the pressure of doing it all in one night. It may mean getting disabled seats so that my vision of the band is not obstructed. It may mean getting there early to get disabled parking. And it may just even mean that I don’t ever feel like joining a conga line of Oingo Boingo fans in what Dana deemed a dorkstastic line event! (I love anything dorky or cheesy.) It may mean that I need to rearticulate how we do things together. “I acknowledge you.” Fortunately, I have the best wife in the galaxy, who offers her unbridled support. Whether it be the fair, a Dodgers game, or mundane trips to the grocery store, my life has changed. I never know when my fibro will flare up. I must say no to many things now. I always need a back-up plan. “Yes, I am prepared.” I have added another hyphen to my identity: I am now a Chicanx-queer-crip, and I am facing it head on. My fibromyalgia and I still converse all the time, as you can see. But now, our conversations are two-sided. I may not always get the last word, but I will keep fighting and keep speaking truth to power: “You don’t define me.”
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About the Author
Nina Maria Lozano is an Associate Professor with the Department of Communication Studies at Loyola Marymount University. She received her Ph.D. from the University of North Carolina at Chapel Hill. Her work has been published in Communication Quarterly, Western Journal of Communication, Text and Performance Quarterly, and numerous other academic outlets. She is a regular contributor to the Huffington Post, and other political public outlets and news media. Her most recent publication, Not One More! Feminicidio on the Border, published with the Ohio State University Press, has received stellar reviews. Her current book project extends this work by examining feminicidio and gendered asylum.