Category Archives: Death

ankylosing spondylitis, Burning Man, chronic disease, chronic pain, Death

The Skeleton I Found at Burning Man

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I attended Burning Man for the first time in 2016. It was the best thing that could have happened for me at that point in my life. I left feeling invigorated and revived, having reclaimed permission to love my broken self again.

I thought Burning Man had given me a new lease on life, but it had actually prepared me to deal with my dad’s sudden death. It was a blessing disguised by what had initially been a more exciting package.

Every burn is different. For me, 2016 was life-giving even in the face of my father’s death. So when I returned to the default world after the event, Black Rock City remained a beacon of hope. It had been my last hurrah before shit hit the fan, like my innocence had been left there.

I spent the next year slogging through continued trauma and unraveling stability. In many ways, the memory and distraction of Burning Man kept me going. My dad had died. I lost and couldn’t regain weight. Trump was elected. My healthcare was threatened multiple times by Congress. Cross-country travel to manage my dad’s estate was physically taxing. Changes in medications caused my appetite and weight to drop even further. And I entered the verge of homelessness.

I was desperate to return to the place that had saved me. So return I did.

The 2017 Burn could not have come at a better time. I arrived in Black Rock City the most broken I have ever been, with very little self-worth remaining. The three things I had managed to hold onto were hope, a shred of determination, and memories from the previous year. Continue reading The Skeleton I Found at Burning Man →

#sickbody, Advocacy, Charis, chronic disease, chronic pain, Current Events, Death, disability, health, Health Insurance, Healthcare, Inequality, Invisible disease, Medicaid, Patient Advocacy, Politics, sickness, SSDI

Repealing Obamacare Could Kill me

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The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma. Continue reading Repealing Obamacare Could Kill me →

Current Events, Death, Equality, family, Gender, Grief, Inequality, LGBTQ, Love, Mass Shooting, Relationships

Orlando Happens Every Day

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We say it would never happen here. It could never happen to me.

But it did happen. It happened to us. It happens every day, on street corners, in homes, at workplaces, on Facebook. Hatred isn’t always seen. Homophobia isn’t always obvious. But they’re always intrusive and divisive.

We on the receiving end are accustomed to being wary of holding hands or kissing in public because we know someone could be watching and choose to target us. Fear builds. And builds. And builds until we hide our identities, even from ourselves, when we leave the safety of our homes or keyboards. Some of us can’t hide (or pass) because we look too masculine to be a woman, too feminine to be a man, too gay to be straight – too much “them” to be “us.”

Queer love and existence has always been more private out of necessity and out of fear. We are keenly aware and constantly reminded that there are people who hate us for who we love or how we identify. It could be anyone, so we tread lightly in public, many of us. And now we are pushed even further back into our homes, our bedrooms, our closets…because maybe these are the places we’ll be safe. The only places we can be safe, maybe.

We don’t want to hide. Continue reading Orlando Happens Every Day →

Christianity, Current Events, Death, family, Grief, Love, Muslim, open letter, Racism, Relationships, Religion, Terrorism, Uncategorized

I Love You, Terrorist

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I love you, terrorist.

You have a name, like I do.

You were once a child. We both were, once.

Perhaps we’ve shared the same joy that comes from riding a bicycle. We’ve shared the same flavors of favorite foods, the beauty of sunsets, the feeling of joy while playing a fun game.

We’re both human. We share the same stars, moon, sun, and earth. Our bodies work in much the same way.  Food and water nourishes us and sleep invigorates us.

We both have parents and families that taught us how to discern right from wrong until we grew old enough to explore different sets of ideas and ways of thinking.

There are people in our lives we love so deeply whose losses we would grieve terribly should anything happen to them. Perhaps you’ve known grief at a young age, like me.

We are more alike than we are different. Continue reading I Love You, Terrorist →