Category Archives: spondyloarthritis

Burning Man and My Disease

An oft-used quote at my alma mater is: “From the outside looking in, you can never understand it. From the inside looking out, you can never explain it.”

This year I went to Burning Man, an arts, music, and alternative lifestyle event/”festival” in Black Rock Desert in Nevada. Upwards of 70,000 people come together every year the week leading up to Labor Day to party, play, explore, gift, create, and survive in the middle of a desert complete with dust storms, extreme temperatures, and limited access to resources. You just have to experience it.

Aside from a desire to engage in a society where clothes are optional, costumes are revered, and money is virtually outlawed; I needed an escape from my life which, in short, has never been easy. I needed the spiritual retreat my priest experienced at his first Burning Man in 2015.


My initiation as a virgin to Black Rock City involved hugging a naked man, hitting a gong, and rolling in the dust. Immediately, I was Home.

dsc_50601
Sculpture by Laura Kimpton

I went to Burning Man intending to spend time at the Temple, where people leave things they need to release: prayers, tokens, fears, celebrations, memorials. There are weddings, funerals, meditations, and services; people crying and hugging and others alone in silent introspection. It seems the Temple consistently attracts a larger crowd than any other place in Black Rock City. It’s a place to take a breather from partying, to find a safe space from an overwhelming emotional experience, to celebrate or remember, or just stop and feel. As with all things Burning Man, the Temple does not stay. We cling to its temporal nature and wait for it to be set ablaze the final night, cleansing us of whatever we left there. It’s a symbol of transition and release. Continue reading Burning Man and My Disease

My Running Shoes Are Waiting for a Cure

My running shoes shuffle hesitantly by the door, moving in unplanned rhythm with cat hair and dust bunnies that create a grey veil over their silent, still tongues. How long have they been sitting there? They peer at me hopefully every time I open the front door, but I can see they feel more neglected each day, every time I look at them and shake my head: “No, not today. I don’t know when. I’m sorry. I miss you, too.”

Continue reading My Running Shoes Are Waiting for a Cure

My Walk to Cure Arthritis

I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me.  This walk felt like something else to fill up space on my calendar. I could be doing…something else.

It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.

935348_579433042076719_1780496394_n (1)
With Suzy, 2013 Arthritis Walk

I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”

It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.

It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars. Continue reading My Walk to Cure Arthritis

#Spondylitis Awareness Month

received_10156921444425347.jpeg
Image by Rich Beckermeyer Makeup by Alex Cassie

On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.

I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.

We do not choose to be strong. We become strong when we choose to survive.

April is Spondylitis Awareness Month. Learn about Ankylosing Spondylitis by watching this video created by the Spondylitis Association of America.  Then share it.