Category Archives: chronic pain

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 →

Advocacy, ankylosing spondylitis, chronic disease, chronic pain, Current Events, disability, Health Insurance, Healthcare, Medi-Cal, Medicaid, Patient Advocacy, Politics, public speaking, spondylitis, spondyloarthritis

I Told My Healthcare Story at a Press Conference Today

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Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.

Two leaders
Charis Hill and Congresswoman Doris Matsui

These were my remarks:

Continue reading I Told My Healthcare Story at a Press Conference Today →

Charis, chronic pain, Invisible disease

I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.

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If you don’t already know, pain is a deeply personal subject for me. I have been fighting ankylosing spondylitis (AS) since 2000, since I was 13. AS is an often-invisible, progressive disease that attacks joints of the body with painful inflammation. In severe cases, it can cause bone spurs to grow that can fuse the spine into a single long column of bone. AS can also damage multiple organs, including the intestines, liver, kidney, lungs, heart, and eyes. There is no cure.

I have made it my mission in life to do something about that ‘no cure’ part by raising awareness in all the ways that I can. I have been on the news, written articles, interviewed celebrities, represented patients at conferences and meetings, given speeches (including a TEDx talk), and testified in state legislative hearings and with members of Congress on Capitol Hill.

Recently I became a performance artist, too.

Each month, Crocker Art Museum in Sacramento, California hosts a themed ‘ArtMix’ night. In August 2017, the theme was Combust, inspired by Burning Man, and I was granted permission to be an interactive art installation. I named the piece ‘My Body the Temple,’ inspired by the Temple at Burning Man.

I wore a bikini, sat on a stool, blindfolded myself, and offered people the opportunity to write their invisible pain on my body.

Island
Image by Rich Beckermeyer, Rich Beckermeyer Visuals

Continue reading I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened. →

ankylosing spondylitis, Charis, chronic disease, chronic pain, Invisible disease, spondylitis, spondyloarthritis

Q&A with Charis about her journey with Ankylosing Spondylitis

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*Note 11/28/19: Charis now uses they/them/their pronouns. This post was titled before that change.

These questions were asked by friends of mine after I was diagnosed with Ankylosing Spondylitis. If you have a question, add it in the comments below!

How old were you when you started showing symptoms of AS?

I was 13 when I first began showing symptoms, although I’m beginning to think I was younger since I had really bad “growing pains” in my knees as a young kid. At 13, my hips began aching and cramping – I recall my friends in their 60s telling me it sounded like arthritis.

When were you first diagnosed, and how did you handle it? 

I was officially (clinically/medically) diagnosed during the spring of 2013, although I knew what it was several months beforehand. I did not have insurance when I found out, so I couldn’t have an official diagnosis until after I found insurance. At the time I would have been charged more for having a pre-existing condition. My whole world was uprooted. I have accepted that I have the disease, but I have not accepted what I have lost and what I am and will continue to lose.

How did it present initially and how were you finally diagnosed?

Symptoms multiplied over time as I aged. In late middle school I began experiencing a dull achy pain in my lower back – it hurt to lie on my stomach and prop myself up on my elbows because it arched my back (that aggravated my pain). In college my back would spasm at night. Severe low back pain began my sophomore year in college, even while I was playing college soccer.

Throughout my life: I would be told by people I sigh a lot, but I did not notice it – it turns out I have always struggled to fill my lungs with air. I was also always a very fidgety person, never able to sit in one position for long.

Some upper respiratory bug caught me in the fall of 2012; it wouldn’t go away. I went to urgent care twice in two weeks for a pneumonia scare and a heart attack scare, but each time nothing was discovered. When doctors tried to give me anti-anxiety and anti-depressants, I did my own research and discovered I had inherited my father’s disease. This was days after my 26th birthday in 2013.

I didn’t connect all my symptoms to the same disease until after I was diagnosed. Continue reading Q&A with Charis about her journey with Ankylosing Spondylitis →