AS Gave Me Empathy

When I think about myself a few years ago, I think of long nights and parties. Struggling to find the energy, but with relative painlessness. When I think of my old self, I think I was brazen, a little reckless, overly emotional, all-in, a constant whirlwind of art and writing and working and overworking. Living in New York City has given me enough for a lifetime; I've done and built and worked on and learned from and experienced so much in terms of art, friendship, career, and culture.

My dark spiral

But come 2017, something changed in me. I became bone-tired. It was as though I simply hit an invisible wall. And the wall held me back from myself. I want to do all the things but I couldn't. It was a changing year all-around. I started a job I hated, I lost family members to illness, and I began falling into a dark spiral. The stress became overwhelming, and I think it really triggered my AS into action.

I got my official diagnosis the next year. I saw two rheumatologists to confirm this, and then the AS life began. I hate to admit this, but before my experience, I gave less thought (although I had sympathy) to disability and disabled people, accommodations for disability, and chronic pain.

I didn't really understand what people went through (and in many ways I still don't). I didn't really need to understand, as selfish as that sounds. I was living a privileged life of mobility and pain-free days most of the time, even when I was experiencing early AS flares.

It didn't dawn on me that the literary conferences I went to had no wheelchair ramps — anywhere. It didn't dawn on me that my friends with inflammatory diseases bailed on events because they were sick, not flaky. It didn't dawn on me that while I was out dancing and drinking and being a "normal" person, people were held back by mobility issues and being on heavy immunosuppressant drugs, and medical debt.

Gaining clarity, growing empathy

It's become much clearer to me now what a life of disability means — and why it's so important for the rest of us to understand. As Cassia Pelton writes in Why Do I Call Myself Disabled:

"Disability” is defined as a “physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”

That all sucks. It sucks to feel limited and held back and impaired. These days I know it well. I limp on bad days. I can't get out of bed on worse days. I had to quit my full-time job, take meds that make me feel worse, and deal with inflammation that's caused all sorts of issues that impair my mind and body.

If we were all empathetic to and knowledgeable of disability — in all its iterations — we could stand up for others, fight for others, and have more compassion in the day-to-day.

If I could, I would go back and fight for better access and wheelchair ramps. I would tell my friend I completely understand that they needed to skip our night out. I would try to update my language around disability.