Reflecting On My Past Year With AS

I turned 35 on November 3 (yes, election day, and no — that wasn't ideal at all, ha!). The night before — before midnight — I got into the bath and overloaded it with Epsom salt and CBD bath salts (I definitely recommend this combination both, as I've experienced relaxation and pain relief with this combo), sitting in the water reflecting on the past year or so.

It wasn't as heavy as I thought it might be. It was relaxing, quiet, ritualistic. After all, we were on the dawn of an election, and the country has been in turmoil all year. I got into the water to simply be, to accept the sadness of a heavy, long year, and to revel in being alive. Being here for another go-around the sun.

My chronic illness has changed my life

I thought about how AS has become an important part of my life. Important, I realize, is an odd choice of word. Important is neither good nor bad. It just is. It asks that I show up to it, that I tend to it, that I prioritize it. And it's important because it's changed me — it's made me change my actions and behaviors and thoughts and the way I treat others. It's become a part of my career (thanks to sites like these, although Health Union is my favorite family). It's become part of how I vote, how I push for disability-friendly legislature, how I teach others about disability and ableism. And it's made me realized that I'm disabled and that that's not a bad word, an ugly word, or a shameful thing.

It really became extra important to me the past few years — culminating in the last year as I joined Health Union, began mentioning disability in the books and essays I write, and in how I tend to my own parents, both of whom live with chronic illness. It also has been the year during which I have explored more how chronic illness intersects with issues, like race and gender, and class. Because it's not just about me anymore. It used to be my own trauma and wound — but now I am part of a community, and that is meaningful to me.

One thing I thought about a lot? The fact that I didn't use to think about disability, chronic illness, or chronic pain — even — before I got sick. I didn't truly understand why sick friends would cancel plans (although I tried to be sensitive). I didn't get that mental health issues were debilitating. I didn't understand why or disabilities could look like a million things and no one thing. Before AS, I was young — in my mid-20s, totally wrapped up in my own self-centered life at school and working and dealing with my own personal traumas.

Now, I have a different perspective

I woke up on November 3 and took an hours-long walk through Green-Wood Cemetery (which is a historic space that serves as a gloriously beautiful park with lakes and hills) here in NYC with a friend who shares my birthday. We felt it symbolized to spend our birthday in a space of death — to reflect, to give thanks, to feel gratitude, to honor the life cycle. (Yeah, okay, we're morbid — whatever!).

By the end of the day my back was screaming, my hips felt like someone was sawing them off of me, and my pelvis was on fire. It is what it is. This is 35 for me. Pain, being wary of doing too much or too little, celebrating and mourning all at once. And that's ok — as long as I grow and learn and share what I can with others.