The Social Progression of Ankylosing Spondylitis

When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.

I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.

I talked myself out of it. Or at least I tried: 

“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”

I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.

And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.

I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects. 

The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.


Continue reading The Social Progression of Ankylosing Spondylitis

The Privilege of Having Enough

Black Friday, the day that foreshadows how the market will perform through the new year, was actually a dark day in history (in case you didn’t know) representing a large-scale financial crisis because of greedy Wall Street financers in the 1800s.

Gosh, sounds familiar.

Now we’ve reclaimed the meaning of that day, or rather, corporations have reclaimed it and turned it into a day of splurging and materialism. Cash flows from regular folks’ pockets into the wallets of billionaires and executives who source labor from the underemployed and materials from China. I mean, I am exaggerating a little.

A little.

Let’s Back Up a Bit

I used to spend the day after Thanksgiving going on hikes or long runs and enjoying how empty everything was that wasn’t a store. The outside world was my oyster for that quiet, quiet day.

I refused to utter the words “Black Friday” because I staunchly opposed what the day had come to mean: greed and a blatant disregard for the environmental destruction that comes with unfettered materialism.

Instead, I called it Buy Nothing Day along with millions of other environmentalists who human-cott the spending spree that is Black Friday.

On Buy Nothing Day, I distanced myself from over-stressed employees and screaming throngs of people breaking down doors, running people over, and fighting over highly discounted flat-screen televisions. I was horrified by this violence that resulted in mountains of plastic, cardboard, and Styrofoam and; inevitably, piles of broken electronics and discarded toys after mere months of use.

To me, Black Friday represented the worst humanity has to offer – a piling up of vices so-to-speak – and I stayed as far away as possible.

Then My Life Changed

In 2013 I was diagnosed with a disease that runs in my family (Ankylosing Spondylitis)  that upended my world and disabled me in a matter of a few years. Continue reading The Privilege of Having Enough

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

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

a voice for many

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