Tag Archives: BeingCharis

disability, poverty

I’m Impoverished & Disabled. I’m About to Be a Homeowner in California.

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I moved to Sacramento in 2011 because it was one of the most affordable big cities in California. The cost of living was fairly similar to Raleigh, NC at the time (where I lived before moving to California). In recent years Sacramento has faced one of the fastest climbing housing booms in the nation as a result of Bay Area residents moving in. Rent has climbed at astronomical rates, and so has the price of homes. Low-income and affordable housing has not been a priority to the city and region, and homelessness has grown as a result.

In 2013 I was diagnosed with the same disease that killed my father, Ankylosing Spondylitis (AS). My health deteriorated and I became disabled and impoverished as a result of not being able to work.

Ten days ago, on January 23rd, 2019, when I woke up I didn’t know I would be writing an offer on a house that night. I didn’t think it was even possible.

But when I saw a listing pop up in the MLS search that evening for a house I could afford, I told my real estate agent (who also has AS), “I want a house more than anything. I want to move on this.”

Continue reading I’m Impoverished & Disabled. I’m About to Be a Homeowner in California. →

Pets, spondylitis

To My Chronic Cat, Who’s Incurable. Just Like Me

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Juno.

Last night I slid into bed next to you.

I formed my own blankets around the perimeter of your body so my covers wouldn’t be too heavy on top of you.

I slid a sheet over you and up to your neck and placed a stuffed sloth on your other side, so you’d feel safe, warm, and cocooned in love.

You were in the middle of the bed, stretched out from the tips of your furry Maine Coon paws to the fluffiest end of your tail, with your confused, exhausted face trying to find an acceptable semblance of peace and comfort within the echoey plastic orb of the protective cone around your neck.

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Juno the #SpondyCat. ©2018, property of BeingCharis

Your dissent collar, if we wanted to be funny. Continue reading To My Chronic Cat, Who’s Incurable. Just Like Me →

chronic disease

The Doctor Will See You Now

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It’s the season of dropping things, hips and elbows knocking door frames, “Will this flare ever end?” weeks, buckling knees on flat ground, brain fog competing with memories of the years when I felt younger than my age.

It’s the season of “But you don’t look sick, you look Great!” and “Have you tried yoga?”

It’s the season when, as soon as the door latches shut, the safety of our homes becomes the hell of letting our guards down, removing the mask. Our yoga is the inching off the bed on our bellies, gripping the prescription bottle to suck down a pill and doze for 30 minutes in half-inchworm-half-human-pose before grasping our walker to pee in the middle of the night with shuffle-steps amid stifling stiffness and the pain of partially fused joints that used to swim in the joint juice of cartilage. Chronic yoga.

“Yes, I already do yoga. Maybe I’ll show you sometime.” Continue reading The Doctor Will See You Now →

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.

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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. →