Worth All the Regrets | My Third and Sickest Burn

 

Burning Man saved my life when I desperately needed a reason to keep living with chronic disease and disability. I owe it for reminding me what it means to be a whole human.

I return each year to the event in Black Rock City, a city that rises from the dust and becomes Home to around 80,000 temporary neighbors for 8+ days each summer.

Yet I risk a lot by simply showing up because of my Ankylosing Spondylitis (AS).

My medications severely dehydrate me, I’m at greater risk of sunburn and heat stroke, and symptoms can flare without warning especially if I push too hard. I don’t know what it’s like to not have pain; inflamed lungs make breathing difficult even without inhaling fistfuls of dust; debilitating fatigue can suddenly overwhelm me; and my body is weaker every year, making it difficult to explore without a chaperone lest I become unable to make it back to camp.

In a city where survival is part of living, my decision to be there is radically dangerous and bold.

The reality that every Burn could be my last as my body deteriorates is an unsettling feeling. I don’t want to stop going to Burning Man, but I also fear the inflated odds that I could have a health emergency in the middle of a desert with no access to cell reception or internet.

And during my third Burn, those odds almost won. Three times. Continue reading Worth All the Regrets | My Third and Sickest Burn

How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.

I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.

It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?

But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.

So I bought heels and kind of learned to walk in them.

And then I became a fashion model. I swear it wasn’t planned. During my first photo shoot the photographer had to teach me how to pose gracefully without falling over. Continue reading How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

My Search for Clean Air in a World Blowing Smoke | California on Fire

I don’t usually have an emotional attachment to the appliances in my home. In general I don’t think much about the refrigerator, toilet, or my kitchen table. Unless they break or smell bad. Then I have some emotions, but not good ones.

But I just got an air purifier and I’m definitely emotionally attached.

This isn’t a post about the air purifier though. I figured you’d want to know ahead of time that this is not a post hailing the low-intelligence robot performing air quality CPR in my living room. I’m sorry if you were here for that.

In all seriousness, wildfires and a medical crisis brought a community of people to this impoverished person’s nostrils. My people showed up and breathed life back into me. Literally.

Kind of. Continue reading My Search for Clean Air in a World Blowing Smoke | California on Fire

Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

February 17th, 2073.

Everything was eerily calm. Aside from a few fiery crashed planes and the last of the human-powered trains derailing, the world was quiet. Too quiet, except for hungry dogs with full bladders barking inside suddenly empty houses.

Traffic lights changed from yellow to red, red to green, then yellow to red again. Clock towers struck 9:00 AM and the Times Square marquee scrolled unchanging stock market shares. Swing sets swung and flags unfurled in the breeze.

This wasn’t the post-apocalypse sci-fi anyone had read as a teenager.

People had simply vanished. Poof.

The dark green fog, Green Evanescence, had taken every human with it.

Almost every human. Continue reading Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

a voice for many