The day before I turned 30 I received an email that would change my life.
It is not abnormal for me to receive emails from chronic disease patients, news outlets, doctors, and advocacy groups.
But this email was from Victoria, a videographer, sharing her vision of a documentary highlighting the stories of three people living with physically debilitating, incurable diseases. She wanted me to be one of them.
…Of being a Democrat. Because we try to put in place policies that protect and assist the poor, the disadvantaged, the disenfranchised, the marginalized, the needy…people who are less-than by no fault of their own. I’m proud of being a Democrat because we don’t expect everyone has the ability to pull themselves up by their bootstraps but we do want everyone to flourish as best they can with the same or similar opportunities. I’m proud because we reach across the aisle even when our hands are slapped over and over, we accept defeat graciously and we continue our work even if we can’t have the title ‘President’ or ‘Senator’ on our lapel pins. Continue reading I’m Still Proud→
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 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.
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.
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→
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.
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.