Category Archives: Charis

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

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.

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What do you use your chair for? How a Lyft driver wore me out.

My phone rang – someone was calling from a Washington D.C. number. I usually ignore unknown numbers, but something made me answer this time.

“Hi, this is *Frank, your Lyft driver. I see you have a chair, will it fit in the back of a regular-sized sedan?”

I’d forgotten I had my account on the accessibility setting. This must have been why the only available driver was over 15 minutes away – Lyft had to find someone who could transport a wheelchair.

“Oh, I’m so sorry, I forgot I had the accessibility setting on. I don’t have my chair with me.”

“Oh…ok. Well, I’m – I guess I’m about 10 minutes away. Bye.”

In my mind I began creating an awkward (or worse – judgmental) hypothetical conversation for when Frank arrived. Continue reading What do you use your chair for? How a Lyft driver wore me out.

Q&A with Charis about her journey with Ankylosing Spondylitis

 

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

Watch This Trailer For “Becoming Incurable,” a Documentary About Chronic Disease

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.

Participating would require me to open my heart, home, and schedule to her camera lens, questions, and vision. Saying no never even crossed my mind. Continue reading Watch This Trailer For “Becoming Incurable,” a Documentary About Chronic Disease

An Open Letter to Congress from a Poor, Disabled American

Dear Congress,

My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.

My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:

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He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.

He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.

I learned I had AS in 2013 after a period of sudden, un-treatable illnesses that left me in pain and unable to breathe. Urgent Care doctors blamed my frequent visits on panic attacks and attempted to send me on my way with anxiety medication, but I knew my body better than that. Continue reading An Open Letter to Congress from a Poor, Disabled American

I Did Some Math to See if I Could Afford the American Health Care Act. Here’s What I Found.

Let’s say, just, you know, maybe, could be, hypothetically, I’m living under the Republican-proposed American Health Care Act.

And before I begin, I want to note that I did all of this without a preconceived notion of what the outcome would be. I chose pretty (really) conservative cost estimates to give the American Health Care Act the benefit of the doubt, and to see if, in a hypothetical situation, I would be able to afford the healthcare I need under the proposed system change.

Say I’m 30 (as I am) and, for this example, I’m still able to work. Let’s say I earn $30,000 per year. But it doesn’t matter what I make, because the “tax credit” is now based on age and not income (unless I make over a certain amount). So, as a 30 year old, I get a $2,500 per year tax credit to either A) put into an un-taxed health savings account, from where I can draw money to cover medical expenses, or B) go towards paying the premium of any plan I choose that is considered an “eligible individual health insurance policy” (for instance, I wouldn’t be able to use the tax credit for a plan that covered abortion). Let’s just go with option B for this experiment. Continue reading I Did Some Math to See if I Could Afford the American Health Care Act. Here’s What I Found.

The Dangers of Funding Medicaid with Block Grants; a Patient’s Perspective

When the Patient Protection and Affordable Care Act (AKA Obamacare) was written, the plan was for Medicaid expansion to provide health insurance for people who made too little to qualify for a subsidy to purchase a plan, but too much to qualify for Medicaid under the rules of the past. The goal was to create a system in which no one would fall into a so-called “coverage gap,” and poor people would have access to care regardless of their income.

It worked – for states that adopted the expansion.

A little-known hiccup (ok, heart attack) is that the Supreme Court declared Medicaid expansion optional for states, rather than mandatory. As of January 2017, 32 states have opted in to the expansion (including DC) and 19 states have not. In states that have not opted to expand Medicaid (because of politics) the coverage gap has caused many people to be unable to access affordable insurance or care. This New York Times Magazine article explores the struggles of some of these people: Life in Obamacare’s Dead Zone. However, in states that have opted into the expansion healthcare premiums have risen less sharply and more people are insured.

Case in point: me. I live with a debilitating disease called Ankylosing Spondylitis. I need specialized treatments and medications to slow its progression and prolong my life. Because I’m disabled and cannot work, I am poor, so I am one of over 14 million Californians and over 74 million Americans who receive Medicaid. It is my only option for healthcare. Continue reading The Dangers of Funding Medicaid with Block Grants; a Patient’s Perspective