All posts by BeingCharis

Fashion, androgynous, and artistic model with Ankylosing Spondylitis Car-free bicycle advocate Episcopalian Queer Disabled

Book Review: Salt in My Soul

It’s an interesting feeling to pick up a book when you know how it ends.

When I agreed to write a review of Salt in My Soul: An Unfinished Life by Mallory Smith I wasn’t thinking about that part. So, when the book arrived and there on the cover was a picture of a very alive-looking person doing a headstand, I was hit with a gut-punch realizing I’d promised to write a review about a book by a person who was already dead.

Mallory Smith dies at the end of her book. Mallory Smith is dead.

Now that you know how it ends, too, read it you must! Because it’s 303 pages full of a quarter century of life that was not wasted.

Here’s a deeper reason: it’s achingly human. Salt in My Soul is a raw, unfiltered coming of age story with all the things you’d expect of a child growing up in the ’90s and 2000s through the lens of being sick, incurable, and ultimately terminal. This book inserts humanness and normalcy into sickness, with an inside glimpse into the inner-workings of the mind of a girl growing up, living, and dying with cystic fibrosis.

Cystic fibrosis, from the Cystic Fibrosis Foundation, is “a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.”

I do not have cystic fibrosis, but I do live with an incurable, progressive disease. I knew I would find Mallory’s story relatable, so I jumped at the chance to read a first-person narrative of life with a disease I’m still learning about. Plus, I love memoirs.

While Salt in My Soul summarizes a life with good periods of health punctuated by unpredictable emergencies and long hospital stays that get longer and closer together as Mallory tacks years on – her doctors becoming like family – the thing that resonates most is this: people living with incurable progressive diseases tend to show a superhero-strong shell, yet live complex and difficult lives on the inside. And Mallory gives us a brave glimpse of the inside. Continue reading Book Review: Salt in My Soul

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Ableism Killed My Christianity

I rarely write posts here about my spiritual journey, but in this case I have chosen to share a deeply personal experience that addresses why I have left The Episcopal Church. Whether or not that’s a temporary decision, I can’t say.

Below, I am sharing an edited version of a Facebook post I wrote on March 29, 2019:


I have been quiet.

I have been quiet this week, but I have also been quiet over the last year and a half about a life calling I was responding to after years of holding off and saying, “No. Not yet.”

This is long. You might want to get tea before reading. I’m serious. Also, this post mentions topics and words related to Christianity, disability, and trauma.

When I was about fifteen, a dear mentor and mother figure was dying. Marny was a saint whose gifts were more powerful than a single person could hold. I was so intimidated by her holiness that I was afraid to ask her about it. Something about her goodness opened me up to my own light, giving me permission to grow into whoever it was that I should be. I wanted to be like her, but with a collar. At the age of fifteen or sixteen I realized a calling to the priesthood in The Episcopal Church. I couldn’t express what my call looked like, but I could feel it.

My community was supportive of me pursuing it and provided all the necessary details, should I move forward.

In the end, though, I decided to wait. To grow up a bit. To learn more about life. To see if, down the road, being a priest was really my calling. I pushed it to the back of my mind. Every few years I’d get a reminder to think about it again, but I’d keep it to myself. I’d push it back again to the back of my mind. And I would say, “No. Not yet.” Continue reading Ableism Killed My Christianity

Dan Reynolds Hasn’t Beat AS

I have noticed when Imagine Dragons’ Dan Reynolds is in pain on stage. I see it surface briefly in the form of a grimace with pained eyes, a determined glare into space, or a barely detectable stretch after standing at the microphone for too long. I’ve said to friends, “He’s in pain right now.” Then I blink, and the moment is gone.

I know what Dan’s pain feels like. I know because I have the same disease he has, the one with a name that sounds like a dinosaur: ankylosing spondylitis.

I, too, have learned to mask my pain in public.

Ankylosing spondylitis (AS) is a systemic immune-mediated inflammatory disease that causes pain & stiffness primarily in the spine and low back, but it can also impact other joints. AS can damage the eyes, heart, and lungs; as well as cause fatigue and cognitive impairment. The disease is difficult to diagnose, often missed or misdiagnosed by doctors for years, and it impacts everyone differently. There is currently no cure.

For most observers, Dan looks the perfect picture of health; he posts regularly about his fitness journey, and mainstream media encourages that perception. One might think he has conquered AS and that perhaps everyone with else AS would feel great if they just copied his approach.

I had the chance to interview Dan about living with AS in 2017 for This AS Life and again in 2019 to learn about his new project, the Monster Pain in the AS campaign. I discovered in both interviews that his journey with AS is more multifaceted than mainstream media suggests. Continue reading Dan Reynolds Hasn’t Beat AS

“The God of All Doctors,” Sterile Environments, & Dirty Medicine

I held a tissue over my face with both hands, pressing my fingers gently into both eye sockets to catch water before it flowed down my cheeks. I breathed in as waves of emotion erupted faster tears and a scrunched up face to hold them in.

I had begun crying mid-visit. Again.

Two years before, I had sat in the same chair and cried the same tears, but today I felt different. Stronger, in a way. Less afraid. The tears felt good.

I heard the doctor stop typing and swivel their desk chair to face me.

I breathed out. Continue reading “The God of All Doctors,” Sterile Environments, & Dirty Medicine