How to Make Burning Man Awesome (Even with a Disability)
MJ has suffered from debilitating migraines ever since they were young. The headaches kept them in bed for up to weeks at a time and severely impacted their ability to live their life. Medications were hit-or-miss and, sometimes, not viable options at all due to dangerous side effects like liver toxicity.
Finally, in 2011, MJ found a medication that worked. Able to attend Burning Man for the first time, MJ found themselves in an almost manic state of enjoyment. But then, the effects of the medication wore off.
“I know as someone who has been chronically ill my whole life, it’s uncomfortable to let people know. I’d rather be able to just deal with it and not ask for anything, but that doesn’t work well in most situations, and it really doesn’t work well at Burning Man.”
How to Make Burning Man Awesome (Even with a Disability)
MJ has suffered from debilitating migraines ever since they were young. The headaches kept them in bed for up to weeks at a time and severely impacted their ability to live their life. Medications were hit-or-miss and, sometimes, not viable options at all due to dangerous side effects like liver toxicity.
Finally, in 2011, MJ found a medication that worked. Able to attend Burning Man for the first time, MJ found themselves in an almost manic state of enjoyment. But then, the effects of the medication wore off.
“I know as someone who has been chronically ill my whole life, it’s uncomfortable to let people know. I’d rather be able to just deal with it and not ask for anything, but that doesn’t work well in most situations, and it really doesn’t work well at Burning Man.”
Today, MJ is still trying to find something that works long term, but they no longer let their migraines stop them from “burning,” as attending the multi-day festival is called.
“I’ve had to figure out how to keep doing Burns, this thing that I really care about, under conditions where I am much more debilitated,” MJ said.
Below, MJ shares their tips for attending Burning Man with accommodations.
Pacing and Boundaries
Even able-bodied Burners will repeat the adage “it’s a marathon, not a sprint.” For people who have chronic health issues, however, these are words to live by.
Know what you need to say “No” to.
Be very realistic about what you can take on, which may be less than you normally can, simply because of the stress of being away in a new environment.
Take extra down time.
Pay attention to your body and rest when you need to, both at the event and afterwards. MJ recommends scheduling an extra day or two before or after the festival to recuperate.
Pay attention to what you are eating and drinking.
What you ingest will impact your energy, and mood and possibly interact with the medications you are taking. Also, remember Burning Man is in the desert, so keeping up your hydration and electrolytes is incredibly important.
What You Pack
MJ believes in the saying, “Max prep is self-care.” This is especially true when it comes to Burning Man. Despite a subculture of Burners who pride themselves on how little they pack, as MJ says, “If you’re a Burner with a chronic illness, don’t listen to them.”
Pack a “comfort kit” (or two).
MJ packs two “comfort kits,” which hold anything that can help alleviate discomfort or symptoms. They have one in a quart-sized Ziploc bag they carry with them in her backpack. A bigger kit, in a plastic bin, is left at their campsite.
The smaller bag might contain cooling forehead strips to keep them from overheating Tiger Balm, as well as a snack to keep their blood sugar up.
The bigger bin, left at the campsite, may have cooling neck pillows or blankets and sweaters, in addition to comfort foods, ginger root for nausea, and tea as well.
Also, let people know where your comfort kit is in case you end up stuck in an area away from your campsite. One year, MJ was working on their art installation in Black Rock City’s deep playa when they needed to set up a place to lie down and recuperate. Their friends knew where their kit was, so they were able to bring the necessary items to them.
How You Communicate (What You Tell Other People)
Let your party know what you’re dealing with.
Tell your support network – whether that’s a campmate or your group of friends – that you are navigating a chronic illness or disability and may need their help.
“It’s really hard,” MJ said. “I know as someone who has been chronically ill my whole life, it’s uncomfortable to let people know. I’d rather be able to just deal with it and not ask for anything, but that doesn’t work well in most situations, and it really doesn’t work well at Burning Man.”
That can be uncomfortable but remember you would also want to be able to support your friend if they needed your help.
Advocate for your needs.
If something in your environment makes you uncomfortable or exacerbates your symptoms, say so. MJ, for example, is sensitive to smell and asks their friends and campmates not to smoke tobacco near them.
It can also encourage other people to share their accommodation needs as well. MJ recalls a time when, after sharing their smell sensitivity, a brain injury survivor felt comfortable sharing the warning signs they would show if their disability issue flared.
ABOUT BRAIN INJURY ASSOCIATION OF ARIZONA
The Brain Injury Association of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.
What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.