Honestly, I am still learning so many things about my Tourette’s and how it manifests. There will probably not be a time in my life when I don’t learn something new about my TS. This past year, I have been trying to be more aware of the situations that worsen my tics. As an unrelated example: I’ve always had seasonal allergies but have never made a connection between them and my tics. I’ve noticed that when I have bad allergies, my tics skyrocket. They will stay “bad” for about two days before going back to normal. It is not a riveting discovery, but it makes it easier to manage my expectations and not be too hard on myself.
I have always loved live music. In the last couple of years, Ricky and I have made a conscious effort to attend more concerts and have loved every second of it. This year, I’ve been to about 10 concerts, not counting Bonnaroo, and I have made some interesting observations while being there.
Let’s talk about why/how we ended up at Bonnaroo, of all places. Ricky and I had been talking for a while about going to a music festival, and we found Bonnaroo’s lineup on Insta. We really liked a lot of the artists who were playing, and it was close enough to Arkansas that we could drive. It also aligned perfectly with Ricky’s summer break. I was recuperating mentally, emotionally, and financially from the whole “getting randomly fired from my job” debacle, and this seemed like the perfect idea to decompress and do something way out of our comfort zone. I bought the tickets as a surprise and had planned to wait a couple of months to tell Ricky about them, but I am horrible at surprises and ended up telling him an hour after I got them.
This would be a good time to tell you that I had been camping a total of 2 nights my whole life, and they were underwhelming at best and dreadful at worst. I was a little skeptical regarding my ability to camp for so long, although Ricky was very confident. A few weeks before the trip, a couple of our really good friends joined the adventure, and I was thrilled to have more people added to the mix.
When purchasing parking tickets, you have to choose an entry day, and we chose Wednesday. We decided to drive through the night to make it by Wednesday mid-morning. Although timing wise it was a good idea, that drive was brutal. We took two cars because we had so much stuff, and there was no way all four of us and our stuff would fit in one. This honestly worked out great because it allowed us some more space in the grounds.
ESSENTIALS
- A Gatorade sideline cooler: We filled it with drinkable water at the festival and left it in our tent area. We always had potable water, and it stayed pretty cool.
- A storage box (black one with a yellow top): This was such a good idea because it held a bunch of random things. Air pump, extra cords, a first aid kit, extra blankets, toilet paper, paper towels, a speaker (don’t forget the speaker), etc. It also worked as a table/chair depending on what we needed. We did take a small foldable table that was great.
- Small propane grill: We were big fans of this since we were camping and knew the high prices of food. We wanted to cook some meals at the campsite. We made breakfast on the grill almost every day and some lunches.
- Coolers, coolers, and coolers: Yes, this is on top of the Gatorade cooler. We took a small YETI (Tundra 35), which was perfect to hold all of our ice and some of the food that really needed to stay cool, like dip and hummus. We took a big Lifetime 65-quart cooler that we got at Sam’s for like $150, and this held all of our beers, seltzers, cokes, and food that did not necessarily have to stay super cold. The ice on the grounds is pretty pricey, so if you can make the Walmart one last a while, you’d be saving some money. Also, reusable water bottles that are easy to carry. I am not a fan of the bottle/backpack situation, but we had a really nice reusable water bottle that we took everywhere, and there are lots of water stations.
- Baby wipes, sunscreen, more baby wipes, more sunscreen: Showers are like $10, and there’s always a line, so we wiped down with baby wipes twice a day. Since it’s in the middle of nowhere in the mid-summer, it is incredibly dusty, so your feet will be gross, and your face too. I cleaned my feet and my face almost every time I was at our campground, and I took some baby wipes
FESTIVAL TIME
We went on a Walmart run in Manchester since it was the closest to the festival grounds, and we waited until they opened at 6:00 am. This is where we got all our food. It was close enough to the festival that everything made it perfectly, and we stocked up enough so that we didn’t have to use the grocery stores inside the grounds. We arrived at the actual festival surroundings around 9:00 am on Wednesday morning. Multiple people warned us that upon arrival, the car line was going to take hours, I don’t know if it was a good arrival time or if it was more organized this year. However, from arrival until we were in our camping spot, it only took maybe an hour. It really wasn’t bad, and we had plenty of snacks to keep us entertained.
I won’t go into full detail of every day because there was a lot going on. Honestly, camping was a lot more fun than I expected. I was so extremely exhausted every time I laid down that I could have slept on the floor every night and not even noticed. In fact, I did nap on the floor a couple of times because it was so darn hot. On the last night, after the Foo Fighters set, we went back to the tent and laid down for the night since we were leaving early the next morning. However, the weather, which had cooperated so far, decided to grace us with a massive thunderstorm. I already don’t like them, and being in a tent while one was happening was definitely not my idea of a good night’s sleep. But I survived, and that’s all that matters.
My tics weren’t awful when we arrived on Wednesday, considering I was sleep deprived, hungry, and incredibly excited for the week ahead. But over the course of the five days, I noticed my tics getting louder and more frequent. Our camp neighbors were way too nice about it. By that, I mean they did not ask or complain and basically ignored my tics, which I know should be the standard behavior for anyone, but sadly it is so far from what actually happens. When you have Tourette’s, being ignored is counted as a massive win, at least for me. Sorry, that took an unexpectedly dark turn.
Moving on, I realized that the loudest concerts or the ones I was more excited about would make my tics worse. If you’re familiar with neurodiversity, it seems obvious that I have sensory issues, well I hadn’t made that correlation until this summer.
Being around 80,000 other people in close quarters, loud music, lights, and the party atmosphere were defining factors in my tics for the month after I got back from Bonnaroo. My yelping got louder and a lot more frequent and super annoying. Although this doesn’t sound like a great discovery, it was massive for me, for many reasons.
Mainly the fact that I can already expect my Tourette’s to get worse during an event like this helps me to do “damage control” before and after the event. Sometimes your tics increase with no apparent reason, so it just kind of hits you out of nowhere. Now that I can expect this increase, I allow myself some leniency, and I don’t get frustrated with myself as I would have before. I would usually get so upset that I “couldn’t enjoy the concert because my tics got bad.” Now I’m like, “duh, my tics are bad because I am enjoying the concert.” That paradigm shift for me was fundamental in allowing myself to enjoy certain activities while having obnoxious TS symptoms because both things can exist and be felt by me at the same time.
Here’s the thing: Do I like it when my tics get worse? No. Am I going to stop going to concerts? Most definitely no. I needed to learn that my enjoyment wasn’t exclusive to my tics being good or bad. I recently went to the Taylor Swift concert in KC, and by the time the concert ended, my tics were godawful. But now I knew the reason and did not fret about it for more than 5-10 minutes.
During the last year, I have been able to reduce my medication by 80% (full disclosure: this happened mainly because after I lost my job, I lost my health insurance, so I cut it all cold turkey. 10/10 do NOT recommend) without major changes in my tics. I stopped taking one medicine completely and reduced the intake of the second one. Now I know that when I have a concert scheduled or a big event at work, I can up my medicine just a little bit the days before and after, and it helps tremendously.
There are definitely other tools I can use, such as earplugs and sunglasses, for concerts. However, I haven’t felt the need to utilize them just yet. At this moment, my focus is on accepting and embracing what my body does during concerts and lowering my expectations of others, as unfortunately, there are some unkind individuals out there. Overall, Bonnaroo was an incredible experience, and without a doubt, I would jump at the chance to do something like it again.
