Category Archives: Allies

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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

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One Lovely Blog Award | BeingCharis

BeingCharis has been nominated for a One Lovely Blog Award by Rhiann, who writes about her long-standing brain stem lesion and spastic paraparesis on her blog,  ‘My Brain Lesion and Me.’ Check out her blog to learn more about experiences, insight, and life from another chronic disease sister. Thanks for the nomination, Rhiann!

The One Lovely Blog Award is a novel way of recognizing and introducing bloggers to each other as well as readers to different bloggers. Read a few facts (encouraged) about me below and check out those I’ve nominated to receive this quirky, collaborative, community-connecting award.

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Continue reading One Lovely Blog Award | BeingCharis

Orlando Happens Every Day

We say it would never happen here. It could never happen to me.

But it did happen. It happened to us. It happens every day, on street corners, in homes, at workplaces, on Facebook. Hatred isn’t always seen. Homophobia isn’t always obvious. But they’re always intrusive and divisive.

We on the receiving end are accustomed to being wary of holding hands or kissing in public because we know someone could be watching and choose to target us. Fear builds. And builds. And builds until we hide our identities, even from ourselves, when we leave the safety of our homes or keyboards. Some of us can’t hide (or pass) because we look too masculine to be a woman, too feminine to be a man, too gay to be straight – too much “them” to be “us.”

Queer love and existence has always been more private out of necessity and out of fear. We are keenly aware and constantly reminded that there are people who hate us for who we love or how we identify. It could be anyone, so we tread lightly in public, many of us. And now we are pushed even further back into our homes, our bedrooms, our closets…because maybe these are the places we’ll be safe. The only places we can be safe, maybe.

We don’t want to hide. Continue reading Orlando Happens Every Day

My Queer Story

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

When you see me I’m acting

When you see me in public I’m putting on a show. Curtains and…action. Seriously. All the world’s a stage.

Especially when you’re sick. And I mean sick.  Whether you have cancer, ankylosing spondylitis (AS), multiple sclerosis (MS), lyme disease, amyotrophic lateral sclerosis (ALS), fibromyalgia, gastroparesis, vitiligo, rheumatoid arthritis (RA), depression, anxiety, post-traumatic stress syndrome (PTSD), etc etc etc, or a mix of more than one extreme disease, you’ll probably relate to the desire for “normalcy” in this post. Continue reading When you see me I’m acting

Standing in Solidarity: Black Lives Matter

I didn’t plan on writing this piece about #BlackLivesMatter.  I wanted to watch how it all played out without getting too involved. Truthfully I was afraid that I would say something wrong that would make me look unintelligent and uninformed. Then I realized that by being silent about it, somehow I was allowing more damage to happen.  I write this from a place of vulnerability, love, and hope.  I’m willing to be brave for those whose voices are drowning in fear. I hope to amplify the voices of my black brothers and sisters as they scream, even when it seems no one is listening. I hope to be corrected, as needed, by those whose lives are in danger and whose shoes I can never occupy. I will keep listening.

Continue reading Standing in Solidarity: Black Lives Matter