Tag Archives: sacramento

Becoming Incurable | Help Make This Chronic Disease Documentary a Reality

Last summer I announced that I was being featured in Becoming Incurable, a film featuring the stories of three people in Sacramento, California, each living with different chronic diseases: Ankylosing Spondylitis, Lyme Disease, Mold Illness, and Dystonia.

In that announcement I said:

Since that day in February when I received Victoria’s (filmmaker/director) email, I have welcomed her into my life with Ankylosing Spondylitis and hidden nothing from view.

I am heartened by Victoria’s passion, curiosity, and talent in videography and visual storytelling. I am humbled by her desire to make this more than a film. She has poured heart and soul into this and I have witnessed her feel deeply and dream big as she has jumped into the deep end with us three professional, chronic survivors.

What I didn’t realize, even when I told all of you that I was in the film, was how big of an impact it would have in the chronic disease community even before the movie itself was ever finished! Becoming Incurable has become much more than a film; it has become a platform empowering people to share their own stories and lives with incurable diseases, largely thanks to the passion and drive of director/filmmaker Victoria.

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Voices of the Chronically Incurable

Becoming Incurable, which is scheduled for release in 2019, has already been telling short stories of people living with chronic diseases in the USA and abroad in “Inside Incurable Lives” video episodes and audio-digital magazine issues (find the latest issues on Facebook or the film’s website).

Continue reading Becoming Incurable | Help Make This Chronic Disease Documentary a Reality

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I Told My Story at the 2018 Women’s March in Sacramento

Below is a video and transcript of the speech I gave at the 2018 Women’s March in Sacramento. The current video may be updated with an official rally video after it is released.


(Video courtesy of Darcy Totten, Activism Articulated)


Sacramento!!!

My name is Charis.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.


I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.

In 2016, I made the hardest decision of my life. I applied for Social Security Disability. Now, two years later, I am still waiting for a decision on my case. For two years I’ve been surviving on savings and occasional financial help. But with Sacramento’s rent rising astronomically and my savings and health in decline, my future is uncertain at best. Continue reading I Told My Story at the 2018 Women’s March in Sacramento

A New Wheelchair User’s Experience at the Women’s March

The first time I used a wheelchair was after tearing my ACL during a college soccer match in Washington, D.C. in 2005. My teammates convinced me to use one when we visited the Holocaust Museum, instead of crutches. I remember feeling invisible. I remember being trapped in the middle of congested hallways and exhibit rooms, seeing nothing but the backs of people scooting around and in front of me like I was a planter box in their way. I remember feeling empathy for people who spend a majority of their lives in a wheelchair. I hardly remember anything about the museum from that visit. And I became terrified of ever needing to use a wheelchair again.


On January 21st, 2017, I rolled in the Women’s March on Sacramento alongside some 30,000 people. I have only recently, very reluctantly, decided to begin using a wheelchair because of deteriorating health. My experience from college still haunts me, but I am learning to embrace how much more fully I can participate in life by using assistive devices that reduce pain and fatigue caused by Ankylosing Spondylitis. It’s the difference between staying home and showing up.

However, I was nervous about navigating the march, even with friends to help push me. I expected that I would spend all my energy advocating for space just to be able to proceed in a straight line. I thought I might regret the decision to use the chair, even though not using it could result in being bedridden for days or weeks.

Would I return home wishing I had not gone? Continue reading A New Wheelchair User’s Experience at the Women’s March

“An Invisible Disease” – my TEDx talk

In September, I had the honor and privilege of giving a TEDx talk just two weeks after my father died from Ankylosing Spondylitis, a disease I inherited from him. I am so grateful for having this platform to share via the Sacramento TEDx Changemakers series.

I hope you’ll watch and share this video to raise awareness about living with chronic illness, but I also hope you’ll take something away for your own journey.

Click here to watch the 8-minute video:

An Invisible Disease : Charis Hill : Sacramento TEDx Salon


My Walk to Cure Arthritis

I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me.  This walk felt like something else to fill up space on my calendar. I could be doing…something else.

It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.

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With Suzy, 2013 Arthritis Walk

I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”

It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.

It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars. Continue reading My Walk to Cure Arthritis

What Mom Thinks About Me Being Sick

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Mother, Caroline, and Daughter, Charis, at Meredith College circa 1989. Charis is wearing the first dress she ever picked out.

I have ankylosing spondylitis and several mental health issues. I asked my mother some questions about them impacting my life. Here’s what she had to say:

What was I like as a child?

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Charis building muscles at a young age

You were always physically active – as a baby, stretching and leaning toward what you liked/wanted.  You enjoyed crawling, walking, later bicycling.  I enjoyed watching you do backbends and cartwheels at about ages 6-10.  You wanted to be scored – 1-10 – as though in the Olympics.  You loved kittens and puppies.  You enjoyed holding them and carrying them around.  You were inquisitive.  You were very shy as a toddler, often hiding behind my skirts or my legs so you would not have to talk to people who addressed you.  You enjoyed spending time with people of all ages as you became an older child.  You became friends with adults and enjoyed learning new things such as tennis and fishing from your grandparents.  I had come to believe that “it takes a village to raise a child”, so I encouraged your independence in going alone by bicycle into our village and forming many relationships with nurturing adults there.  I allowed and encouraged you to be outspoken to the point of some thinking you were “too sassy”, but I believed that as a female in this society, you would need to be able to speak up and take care of yourself as you grew up.  There could easily be a book about how you were as a child, so this will have to be an incomplete capsule.

Do we have any similar quirks that you have noticed/ Do you think these quirks are the result of nature or nurture? Continue reading What Mom Thinks About Me Being Sick

Holding Hands With the Reaper

People tell me I should smile more.

But look inside me.

My toes. My toes point soundly forward in shoes that should have my prescription orthotics in them.  I choose not to because I’m 28 and I’m wearing heels as long as I can, so I can feel the “normal” parts of my 20s – and choose pain that I cause myself, thank you very much. I want reminders in 5 years that I could pass as someone my age.  Right now my toes are sound.  I trust my toes, most of the time.

My plantar fascias are aching. They threaten to cramp most nights as I lie in bed, still awake after hours of restlessness.  They ache and throb as if my heart itself has moved to the bottom of my feet. I ask a lot of my feet. These feet hold me in place as I struggle against the rest of me to cook, bathe, check the mail, pedal my bike, press the sewing machine pedal, and occasionally walk in high fashion runway shows.

Though I’m largely unaware of the pain until I pop my ankles, they remain stiff all the time. I rotate my feet clockwise and counterclockwise, back and forth in quick rhythm, in attempt to loosen my ankles and rice krispies happen.  You know, snap, crackle, and pop. Rice Krispies don’t hurt, but my joints do. How can these sounds accompany so much hidden pain that suddenly takes the red carpet?

My knees are chronically, invisibly enlarged from years of soccer and running long before I knew why my injuries were so intense, why they didn’t heal like they should. My quads and hamstrings play injury-tennis, back and forth. The pain is in your court now, left hammie. My weakened muscles are constantly overcompensating for what my body can’t naturally do: fight inflammation, toxins created by overuse, expectant injury, and scarred tissues and bone spurs.  Instead, my body fights my joints as if they are alien matter. Continue reading Holding Hands With the Reaper