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.
A couple years later I was wearing 6 inch heels on the runway and had long since given away that first pair that were barely over an inch tall.
I still don’t see heels as functional things. I only wear them when I’m modeling; they are but tools. But they are a key to a world I otherwise would have thought closed to me because of my fragile body and health. I still don’t particularly even enjoy heels, yet my closet is full of them because they represent my decision to say F-you to a life flipped sideways and blurred beyond recognition.
This has become my default trajectory as someone living in a body that will progressively fail me for as long as I live: saying yes to unlikely things.
I’ve lived with pain since I was at least 13 years old; I was finally given a name for that pain when I was diagnosed at age 26 with ankylosing spondylitis. As a 26 year old, I decided to not just survive, but find a way to say yes to keep on living.
One could argue that a smart person with a chronic disease would do everything possible to have the least risky, safest, secure-ist life possible. The most protected life. A life that would keep my body alive longer. People ask me all the time why I push myself so hard. Why I make decisions that hurt my body. Why I say yes to activities that I shouldn’t do.
“What if there’s a cure one day?” they ask.
“What if there isn’t?” I respond.
Since my diagnosis I’ve said yes to more opportunities that are risky to my health than I could name. But I want to fill my life with, well, life.
On their deathbeds, people’s biggest regrets are often the things they didn’t do, not the things they did.
People with life-threatening or terminal diagnoses often do as much on their bucket list possible before they die.
Others, healthy people, generally work for years and years and years and save up for a hopeful retirement full of travel and experiences. Lives spent working and waiting to be alive later.
So the decision I’ve made as a person living with a lifelong progressive disease is to live as much as I can while I can.
To not wait for life to happen, but to be the reason my life happens.
I don’t have the luxury of waiting. And I don’t know how long I have, but I do know my body deteriorates significantly by the year. I’ll be preparing for dying for the rest of my life.
So I will keep adding to that bucket list for as long as I live, because I want to live every bit of life all the way to the end, no matter when that end happens. If that end happens tomorrow, I want to know that I have said yes to everything I possibly could have.
Call it risk-taking. Or a death wish. Yet it’s everything but those things. I have a life wish; and that doesn’t necessarily mean I desire a long life. It means I desire living every bit of life I have, and I will not let my raging sick body prevent me from doing so.
It’s not about if I die or when I die, it’s about how I lived.
So that is why I do things. So I know I’m living a life I won’t regret, even if I experience short-term regret almost daily with the consequences of my decisions. That is why I say yes to everything I possibly can, even if that means overdoing it. Even if it means it shortens my lifespan or causes my disease to progress faster.
What is the merit of a long life if it means I didn’t fill it with something worth living?
So I say yes.
I do things.
I feel things.
I learn things.
And it hurts me more than I can express. I pay for every single activity I do. But I choose to because I desperately want my life to have meaning beyond what I can’t control.
And you know what else? Giving myself permission to truly live also helps me embrace the things that help me participate in living, like my wheelchair (which I LOVE), my canes, my medications, and spectacular friends who don’t get enough credit for their love and support of my super busy, super complicated, broken life.
So I will wear heels for as long as I can. I will fly across the country if it means I spend 30 seconds on the runway during New York Fashion Week. Even though it will break me.
I will go to Burning Man, year after year, until I physically can’t anymore. Even though it will break me.
I will take on leadership roles in my church until my body or brain fails me. Even though it will break me.
I will openly and vocally support people living with AS and other chronic diseases until I’m no longer needed. Even though it will break me.
And I will tell my story in front of thousands and millions of people until I have nothing more to say. Even though it will expose me and break me.
This is what it means for me to live for today. To be proud of my life. To experience all the things I possibly can. This is what it means to fill my body with life.
So that when I die, they can say that I truly lived.
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