I didn’t post anything for World Arthritis Day last year because there was a lot I wasn’t able to talk about yet. Part of that was because what happened had turned into a legal matter. That process has now ended, so I’m no longer willing to keep quiet.
After my medical exemption wasn’t taken into consideration, I was put in a situation where I had to get a live vaccine (no, it wasn’t COVID-related) or choose to be unemployed. My rheumatologist told me it was a bad idea.
It was all downhill from there, and I’m still dealing with the consequences today.
For the last year and a half, I also spent a lot of time hearing versions of “this has never happened before” and “we don’t know how to handle this” from people within the legal system.
Because there was so little understanding and so little effort to actually learn, I ultimately lost the case.
I wallowed for a few days and then I decided there were two things I could do: let it go or write about it.
So, in true Alyssa fashion...I chose to write about it.
My journey into theatre began in late 2012, when I learned that musicals weren't just something you sat through twice a year at school or saw in NYC on a special occasion. I'd always loved movie musicals and anything with dancing, from Annie, Grease, The Lion King, and Selena to Dirty Dancing, Saturday Night Fever, You Got Served, and the High School Musical franchise. Yes, that's an eclectic palette for an elementary schooler, and yes, my parents knew what I was watching.
I started out as an ensemble member with two left feet and joints held together by spaghetti ligaments, until my orthopedic surgeon told me to hang up my 1-inch character heels and find another way into theatre, one that didn't leave me in a cast after every show. That turned out to be stage managing, and later writing and producing. If you're wondering whether that sounds wrong, it was. I had undiagnosed Rheumatoid Arthritis (RA) and what would later be identified as Hypermobility Spectrum Disorder (HSD).
I eventually graduated from Marymount Manhattan College with a B.A. in Theatre Producing/Management, after a delayed college experience caused by my RA diagnosis.
Later, an entirely separate set of health problems led to brain surgery (a venous sinus stent) and new neurological diagnoses that have left me sensitive to certain kinds of light and sound, which is extremely inconvenient in one of the loudest, brightest careers there is.
And somewhere between stepping away from Two Thousand Miles for a while and writing Chronically Dramatic for the BookLeaf challenge, I finally figured out what wasn’t working.
As I started living more of my life in my thirties, Two Thousand Miles started to feel smaller to me. Not because the story wasn’t important, but because I realized it was only one piece of something much bigger.
Chronic illness doesn’t happen in one dramatic arc where you fight for answers, get diagnosed, and move forward.
It happens in intervals.
Sometimes your health takes over everything. Sometimes it fades into the background. Sometimes you think you’ve finally figured out how to live with it, and then something happens that changes the rules all over again.
While all of that is happening, the rest of your life keeps going.
I think stepping away from the musical, living more of that life, and writing the poetry challenge helped me finally understand that.
This site is a place where I can share more of this and actually go into the parts that definitely won’t fit in an Instagram post.
In the meantime, here’s a poem from Chronically Dramatic that I think gets at the heart of what INTERVALS really is and why I’m telling this story.
Still Here
I’m 31 now
And life keeps looping.
In college, I withdrew
because of a flare-up.
Now, I leave jobs
for the same reason.
Chronic means chronic.
I get that now.
This isn’t going anywhere,
so I adapt.
I write.
I edit songs I wrote in my twenties.
I babysit my nephew,
who doesn’t care that I’m tired.
I reconnect with friends
who still remember who I was.
And yes,
I’m still following the Jonas Brothers twenty years later.
It’s not glamorous.
It’s not easy.
But this is the in-between.
And I’m still here.