Category Archives: Advocacy

Dear Prescription Opioid Debaters:

Dear debaters,

I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.

I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.

My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.

And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain. Continue reading Dear Prescription Opioid Debaters:

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I Told My Healthcare Story at a Press Conference Today

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

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.

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.

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

Being Disabled Is a Job

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA. Continue reading Being Disabled Is a Job

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