Connecting in Uncertain Times

I haven’t written here in a long time. There’s been surgery on both my elbows to release and stabilize a dislocating ulnar nerve. My mast cells have flared and there was a bit of a spiral when prednisone caused a mild anaphylaxis. The unexpected “fun” result of that? New and long term breathing problems. I’ve started seeing as sex therapist.

Then you have the general state of what it’s like to live in the United States right now. Healthcare is getting more questionable. My POC loved ones are at a risk level that I never though would see in our lifetime.

Living with EDS and all its friends is a constant trial that takes so much focus and energy. It’s the well known feeling of trying to keep your head up in deep water. Everything else on top of that? It shifts the feeling to trying to tread water in the ocean during an incoming storm with ankle weights.

Despite this, I’ve been drawn to connect with people again. Despite social media being a black hole of doom scrolling. Despite that most of my groups have gotten increasingly hostile. Despite an algorithm that suppresses things I want to see in favor of flooding with politics and ads. Despite it being full of AI and influencers that are happy to spread misinformation if it means they get “the clicks”.

I’ve connected more with my tattoo artist at Envision Tattoo Gallery in Virginia Beach. We’ve been updating the website and discussing the exciting changes going on at her shop. Wanting to get more gallery showings as well as tattoo clients. Watching it shift into something really amazing that I hope to see flourish in the years to come.

I reached out to an amazing artist, Melissa Ng of Lumecluster. Discussions that started as asking her about my ring splints blossomed into so many different directions. Something that’s turned into a true sharing and opening of hearts. A meeting place of political concerns, life as being a minority, the idea of emotional kidnapping, what it’s like being an artist in today’s world, and cats…of course cats.

Even in the middle of the health hurdles, I’ve been speaking with more of my friends that have some of the health-issue-alphabet-soup cross over. I spent hours on the phone with a friend in Texas as she helped me come to terms with the fact that I’ve always had asthma…it’s just been overlooked. How playing flute for years and years actually had an impact on inadvertently fooling the pulmonary function tests I took all that time ago.

And somehow…I’ve made even more new friends along the way. From visitors to the museum I work at to getting to know people in the insect identification groups I help out in. I’m teaching some people how to make pine needle baskets and have served as a drop off point for some unusual spiders. I’ve learned how to play new board games and got the opportunity to share in Japanese sweet potato coffee cake!

We are not meant to live and thrive alone and hyper-independent. I know this on an intellectual level. Yet it can still creep up and make me question my life choices as I’m networking like a little spider. A part of it feels counterintuitive, that I should be wrapping up in a fuzzy blanket and only keeping up with contact with a triaged number of friends. I want to pull in and be comforted in the illusion of safety. I create art and have discussions on philosophy and culture with new friends…and wonder if that is the best use of my time.

But that critic is through the lens of Western Culture and everything that comes along with it. The push to be “Better than the Jones'” as we used to say. We have to be the loudest activists. The most popular social media accounts. The most active advocates. The most productive disabled people. The most skilled artist with high sales. Because if you’re not running yourself raw and ragged to be consumable….are you even worthy of anything good?

I don’t have all the answers. I can’t give you a magic solution for how to join a community or build a new one. Though I don’t regret a moment, there’s been missteps and I’ve lost friends. I’ve been hurt and had to cut people off just as much as I’ve build new and amazing connections. But my personal take? The joy is worth it. The comfort we get from having someone to talk to about the good times as well as times that are….less so. To hear that we’re not completely crazy for being worried about the state of the world. Maybe occasionally to even have someone step in and say maybe we need to look at a new perspective.

The opportunity to be seen. To have those moments where we can see the bits of stardust in each other amidst the chaos. And maybe even to rediscover a different kind of love. For each other. For the world we live in. But most importantly…for ourselves and who we are at our very core. Despite the human meat wrapper we’re all riding around in with a messy sentient ball of bacon jelly at the wheel. We can rediscover a kindness and use it to help sustain us. A kindness out of spite, if you will.