Tag Archives: Disability

ankylosing spondylitis, chronic disease

The Disease Everyone Loves to Hate

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Content note: this post discusses the topics of suicide and death.

I had a pretty good treatment day recently.

I didn’t even get upset that a new nurse tried and failed to get my infusion started. What’s another blown vein, anyway?

The infusion team was excited because they thought they’d seen a picture of me on a Facebook ad (it wasn’t me) – they’d even saved a screenshot to show me. My conversations with the nurses were light-hearted before I transitioned into catching up on emails.

I hid myself in my favorite corner where I can sometimes pretend I’m the only one in the room and I nearly forgot I was in a building with the word “cancer” all over the front of it.

I love the infusion team. And I better love them – these are treatments that I’ll need for the rest of my life unless this drug stops working or a better treatment shows up. I’m what you call incurable.

But as I was leaving my appointment I almost walked into a vendor table being set up for an event. On the table was a sign reserving it for a lingerie business. And then my eyes caught something else: pink.

Pink was everywhere. Rose petal fabric. Pink shirts. Pink everything. Pink was in the air. It smelled pink.

October. Breast Cancer Awareness Month.

I can’t explain how crushing it was to leave my better-than-usual treatment, then turn the corner into an explosion of pink for an event that screamed, “You’re in someone else’s space.”

I have Ankylosing Spondylitis. The infusions I receive for my disease happen in a medical complex named Mercy Cancer Center. Every time I enter the building I see the name in big bold letters above the door and behind the check-in desk. While I wait for my appointment I see poster-sized lists of support groups and special events specifically for people with cancer.

Continue reading The Disease Everyone Loves to Hate →

ankylosing spondylitis, Inspirational, spondyloarthritis

How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

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Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.

I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.

It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?

But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.

So I bought heels and kind of learned to walk in them.

And then I became a fashion model. I swear it wasn’t planned. During my first photo shoot the photographer had to teach me how to pose gracefully without falling over. Continue reading How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis →

Advocacy, disability, Episcopal Church

Disabled Deputy On a Roll

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Note: since publishing this post, I have left the church. Here’s why: Ableism Killed My Christianity.

I implore you to read it, as it overshadows the points I make here.

I became a self-titled Episcopal Church Geek as soon as I learned the proper order in which to extinguish altar candles, when I was 7-ish. My early days as an acolyte are blamed on my desire to be just like my closest older brother, who is five years my senior. But, once in, I was so enamored with being part of how church functioned that I never thought of leaving.
I was hungry for more.
It could seem cult-ish to say I’ve never questioned my faith, but in all honesty that’s the truth. Because the norm in my religious upbringing was that I was encouraged to ask tough questions of God, the Bible, the preacher, our beliefs, rituals, and more. The thing that allowed me to never question my personal faith was the fact that I had permission to question everything about it. The very freedom that I could so easily walk away meant that I had a reason to find out why it was important to stay.
I was 16 or so when I thought I wanted to be a priest, but it would take another 15 years before I would find my true calling as an Episcopalian. I’m still figuring out the whole priest thing.
This post explores some of the ways I am beginning to bridge my “in real life” disability and chronic disease advocacy work with my passion for helping The Episcopal Church truly welcome everyone.

Continue reading Disabled Deputy On a Roll →

Inequality, sacramento

In Support of Rent Control in Sacramento

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I’m a severely low-income resident of Sacramento.

This might surprise you considering I’m pretty well-known for my advocacy related to healthcare, disability, and chronic diseases. You’ve seen me on the Sacramento TEDx stage, the Women’s March on Sacramento, in press conferences and on healthcare panels, in this upcoming documentary, and in numerous television interviews about national healthcare policies.

Someone so steeped in the public eye shouldn’t have a worry about housing, right?

Yet what I haven’t talked about publicly is my very fear of becoming homeless. I’ve reached out to local representatives about my fears only to be redirected or ignored completely. It’s time you know what it’s like for me facing barriers to safe, stable, affordable housing in Sacramento, California.

Mid-June 2018 I was officially granted permanent disability benefits, Continue reading In Support of Rent Control in Sacramento →