Category Archives: Role Models

Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Heroes, Invisible disease, Patient Advocacy, Role Models, spondylitis, spondyloarthritis

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

April 26, 2017 BeingCharis 17 Comments

I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.

It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.

“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”

In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.

Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds →

Charis, Current Events, open letter, Politics, Role Models

A Letter to the Future President of the USA

May 31, 2016 BeingCharis Leave a comment

Dear Future President,

I’m concerned for our country and world, and I bet you are too.

The issues are astounding: people are fleeing rape, war, and other violence. Voter identification laws. Terrorism. Gun violence. Police violence. Bathroom bills. Prison populations. The cost of college. Decreases in pay for teachers. Unequal pay for equal work. Healthcare and specialty medication costs. The creation and sourcing of energy. What women can and cannot do with their bodies. Minimum wage. Budget. Military spending. War.

We also live in a culture of fear.

The news media help us – encourage us – to see the world as a dangerous place. We are rarely shown stories of heroism or positive change; and when we are the highlights are quickly lost in a blur of unsettling news. We are encouraged to expect the worst and protect ourselves against anyone we don’t know.

We need a leader to give us hope in the face of so much fear.

We need a president who facilitates with trust, responsibility, mutual respect, and appropriate transparency. Someone who empowers, collaborates, and leads with people. This job is not for someone with a hero or ego complex, rather, it’s for someone who understands that the job of President is an immense honor and a sobering duty. We need a president whose selfishness will not impede his or her ability to help all Americans succeed. I need a president who understands this. Continue reading A Letter to the Future President of the USA →

Charis, Episcopal Church, Equality, Gender, Inequality, LGBTQ, Love, Politics, Relationships, Role Models, Sexism, Women

My Queer Story

April 7, 2016 BeingCharis Leave a comment

Elementary school:

+I’m on the school bus sitting behind an older girl. She is playing with her hair and I stare at her, intrigued. She turns around and says, “What are you staring at, white girl?” I blush deep red and look away, unsure what I did wrong.

Middle school:

+I still wear my brother’s hand-me-downs. I’m comfortable wearing shorts that reach my knees, jeans with holes in the knees, and shirts multiple sizes too large for me. But I begin to feel self-conscious because the other girls and some of the boys bully me. I am pressured to start dressing more like a girl and I begin to wear tighter jeans and shorter shorts.

+A new boy moves to town and he becomes my boyfriend. We kiss behind a building during a school field trip. We ride bicycles and play soccer together.

High school:

Continue reading My Queer Story →