This past weekend, my husband, my cousin, my friend, and I made our way to Austin to attend the Austin City Limits festival, a three-day music fest taking place at Zilker Park, evidently the same park where they climb the moon tower in the film Dazed and Confused. Texas has experienced a very hot and dry summer with every day in August climbing over 100 degrees, and with the huge hill country fire of yesterweeks, we were unsure if we would make it out alive after it’s all said and done. This is not to mention that I had not been to a music fest in seventeen years. At a ripe age of 32 in addition to the Neuromyelitis Optica (NMO) and the heat, I had to brace myself for a crazy, tiresome time.
And a crazy, tiresome time it was indeed.
I’m going to take a tip from my gig over at Houston Press and give you my “Top 5 Tips for Enjoying ACL With NMO” list. (What’s with all the acronyms?) And here it is…
Top 5 Tips for Enjoying ACL with NMO
5. Bring sports sunblock.
On the first day, we forgot to bring along the sports sunblock which is sweatproof. I ended up using a Neutrogena sunblock with SPF 70, and the stuff was so thick and non-sweatproof, it smeared all over my already sweaty face and neck and made me look like a crazy person. In fact, the stuff was so thick, I ended up sweating even more than usual. John confirmed that I sweated more than all of them combined. Damn sunblock. I will have to say that gross, thick sunblock is better than no sunblock at all, though, because the sun was brutal that day. The high was 95, if you know what Texas summers are like, it really meant it was 105. NMO is bad enough–I don’t need melanoma on top of it. We remembered the sports sunblock the second day, and while it felt much easier and silkier (if sunblock can, in fact, feel silky) on my skin. But what with my luck, it rained on and off all of the second day. Double-damn.
4. Bring enough cash.
Everything was cash only: the art market, the food truck food court, the bars. Sure, there are ATMs, but who wants to pay bank fees on top of the $200+ you already spent on admission and the $$ you already spent on food and beers? My cousin and friend had run out of cash by evening and, needless to say, were sad they couldn’t buy more beer. Lucky for them, John and I were smart and had enough cash to spot their thirsty selves. More importantly, as a person with NMO, I had to be sure I never went hungry or thirsty. I needed all the energy I could get, so it’s good to intake some calories to refuel.
3. Bring toilet paper or wet wipes or both–lots of them.
Outdoor music fests mean porta-potties. Three-day outdoor music fests mean three wonderful days of porta-potties. When there are thousands of people gathered together and drinking beer all day, there’s bound to be a shortage of toilet paper not to mention a shortage of clean facilities. The math is obvious. I was so happy to see my cousin’s antibacterial wet wipe, a tear nearly fell from my eye. With NMO, we know how low our immune systems can be with all the immunosuppressive treatments we get. The last thing we need is for some E. coli to make us sick when we’re supposed to be having fun. I did remember to bring antibacterial spray, but the wet wipes proved much more useful.
2. Hydrate, hydrate, hydrate.
Imagine the merciless sun beating down on you. It’s 90-something degrees, but with the humidity, it feels 105. Imagine drinking beer or whatever liquor you snuck in. Imagine loud music with heavy bass beats–you can’t help but tap your feet, and soon, that toe-tapping turns into full-out dancing. Imagine thousands of people pushing up against you, making you claustrophobic, suffocated, gross. Imagine forgetting the sports sunblock and having to wear thick, creamy SPF 70 sunblock. You’re sweating like a fat kid at football practice. All that liquid spouting from your pores means less liquid in your body. One of the days, we saw a guy lying face-down in the grass. I mean, literally face-down–he was grazing like a cow only he wasn’t moving so maybe a cow statue. John considered giving him water, but the paramedics came and carried him away. We figured he had too much alcohol, not enough water. Don’t be this grass-grazing guy. Take advantage of the misting tents. Refill your water containers frequently, and drink from it. ACL was good in that there were free water-filling stations, and they allowed you to bring empty water bottles and camelbacks. Bottled water and sodas were $2–affordable so you don’t dehydrate in the case you didn’t follow #4 on this list. With NMO, we need to try to keep our core temperatures down. Dehydration is no good; it comes with all sorts of other problems like headaches and muscle tension or spasms. Hydrate with water or Gatorade, not beer.
1. Come prepared.
By prepared, I mean plan ahead. We brought folding lawn chairs which added to the comfort level of our experience. My cousin brought a bath towel to sit or lie on the ground. Most of all, know where you’re going. Map out your route if you have to. With NMO, you need to conserve as much energy as possible so as not to exacerbate any symptoms. I learned this the hard way. On the first night, we followed the crowd out of the park and never bothered to ask where the crowd was headed. It turned out everyone was walking to their parking spots, but we had taken the ACL shuttle in from downtown. We had to turn around, walk back through the crowd, and try to find our half-mile way back to the shuttle lines on the opposite end of the festival grounds. But then another problem arose: since the concerts were over for the night, they wouldn’t let us back in through the park, so we had to go on some roundabout way. The shuttle lines by now were insanely long. A pedi-cab offered to take us back to the hotel, but we were too cheap and said no. We tried to walk further away from the madness to hail a cab, but all the cabs were obeying their law and wouldnt’ pick us up on the side of the road despite seeing my white cane. Officers and ACL employees told us we would have to wait in the cab line like everyone else–apparently, a white cane didn’t let us cut the line like a wheelchair would. We ended up trekking around for 4 or 5 miles, even crossing a freeway at some point, only to end up back in the shuttle line more than an hour later. My point is PLAN AHEAD so you know where you’re going. Don’t be cheap–take that pedicab offer. Don’t be impatient–just wait in that shuttle line instead of leaving and trying to find a cag. You’re just going to get passed over and end up at square one. It was a hard lesson.
I have my own personal gripes now with the APD and ACL and their treatment of the disabled. “If she was traveling alone, we would let her cut the cab line, but because she has you to guide her, we can’t,” an officer had said to my husband. As if guiding me over cragged sidewalks, down alleys, through streets dodging traffic and thousands of concertgoers while trying to navigate our way home and while carrying our folding chairs were easy for John. I ended up with three blisters on my feet. On the shuttle at last, I was so exhausted from the day’s events that my hands were shaking. I don’t even remember the last time that happened. I’m not one to complain a lot, though, and even though it was one of the shittiest nights of my life, I just tucked it away as another lesson learned: BE PREPARED and DON’T FOLLOW THE CROWD. Don’t forget DON’T BE CHEAP and DON’T BE IMPATIENT.
If NMO has taught me anything, it’s that life can toss you a bunch of rotten lemons. When this happens, I just tell myself that this, too, shall pass, that things could always, always be worse. Write off the shitty lemons and learn from it. If I’ve made it this far with NMO, I can make it through ACL.