Gina

A friend of mine with fibromyalgia made a post on facebook today about struggling with believing what her body is experiencing sometimes, and also struggling with believing others before she became chronically ill. I wrote this back in response, and wanted to post it here so I remember it.

I also have fibro, and I’m with you with regards to a lot of this. I honestly didn’t think most [chronically ill] people were over-reacting/sensitive [before my diagnosis], mostly because I already had A LOT of chronically ill & disabled folks in my life. But I did & still do struggle with believing what my body is experiencing. I was taught a lot of lessons about “sucking it up & dealing” growing up — and of course that is all *deeply* influenced by class stuff and gender stuff and abuse history, right?! But one thing I’ve really had to learn as I’ve navigated being chronically ill is that my hard-won, bone-deep, very working-class (and hustler, and hard femme) tendencies to just ride things out and make something out of nothing and POWER THRU!!! are actually really fucking dangerous if I take them to extreme. They are ways to cope and ways to shine that served me well for a very long time, no doubt. And I’m proud that I am a hard fucking worker. That said, my body actually *deserves better* than running running running all the time. My body deserves better than making something outta nothing & just powering thru on sheer will. My body deserves abundance & care.

And okay, I know this comment is all ME ME ME GINA GINA GINA, but clearly/also, YOUR lovely body deserves abundance & care, too. Everyone’s does!

I have a tickle in my throat/sinuses that I am praying, praying, praying goes away soon. I have an autoimmune condition and I get sick very easily. Tickles turn into colds, which turn into flus, which turn into being miserably flat on my back for a month solid.

And school starts again tomorrow, AND my 30th birthday is this upcoming weekend. I would REALLY HELLA CRAZY LIKE WHOA enjoy NOT getting sick this upcoming week/weekend.

Peoples of the Internet: I would heartily appreciate it if you could throw any immunity-supportive woo you can muster my way. Yeah, I know, it sounds silly, but I’m utterly serious. I have spent a lot of birthdays & holidays sick in recent years. It sucks. If I can at all help it, I don’t wanna have to cancel my birthday due to illness.

In the meantime, I’m taking elderberry syrup and oil of oregano and eating chicken soup and going to bed very early tonight.

So, I wrote a post called “we’re all we’ve got” on Xmas Eve, and I put it up here. It’s personal, vulnerable, and still fairly rough. I talk a lot about relationships, break-ups, building family, disability, and what we call community. I was a little scared to put it out into the world, but I’m also proud of it.

And I want to add this addendum: I especially want to say a humbled, happy Thank You to all of the beloved friends who have been my rocks through what has been one of my hardest years to date. But I also want to say thank you to those of you who are not as close to me, but who have still stepped up for me in amazing ways. Everyone who contributed to my health fundraiser over the summer, whether financially or just by spreading the word. Everyone who comes to Girl Talk and Sex Workers’ Writing Workshop. The extended St. James Infirmary and Center for Sex & Culture families. My amazing students in Writing On The Body this semester. Dodie Bellamy & Donna de la Perriere for being amazing professors & mentors in  my graduate program. Everyone who’s offered up support and connections and laughs and, yes, love in the hardest times. You matter. It matters. I’m so humbled, and so grateful.

Also? I ended up having the best Xmas I have ever had as an adult this year, even as I spent much of it home alone and sick. I rested up enough to get to have some lovely, low-key, and downright magical times with old friends. I’ve spent the past few days in general feeling held, buoyed up, beloved, and cherished. Like I’m building up reserve and energy for The Next Big Awesome Thing. It is a great way to feel at the end of this year and the beginning of a new one. And it couldn’t have happened without all the people I hold dear.

Grazie mille, beloveds. You really do mean the world to me.

♥

So. I’m officially a Sickmess on Xmas, and am home in bed instead of spending time at a friend’s party (which was gonna happen tonight) or seeing my family of origin (which was gonna happen tomorrow).

Being alone & sickly on a major holiday is hella hard no matter how you slice it. Holidaze are also always rough for me. They are rough for most people in the various communities I’m in (which include but are not limited to queers, genderqueers & trans people, broke people, disabled people, fat people, perverts, sluts, survivors, and sex workers). Being both sick & alone on a holiday brings up all my Singleton Anxiety and my Cripple Anxiety, and then it cranks both dials up to eleventy. Lots of Am I too much? and Am I not enough? questions have been swirling in my head. Lots of thoughts about family (both blood & chosen) and communities of care, and what I want out of the next year, and what I want from my next substantial relationship.

For the record, I feel a little silly & maudlin to be getting Sooo Deeeeeep! right now (please imagine me saying Sooo Deeeeep! in the Strongbad Voice). But it is what it is. And it makes sense, considering the year I have had.

Of course the holidays also bring up This Time Last Year Feelings and Residual Break-Up Grief Feelings. If I may indulge them for a second: This time last year I was introducing my then-boyfriend (who was queer and pervy like me, and who I met in the very queer and perverse context of a threesome over Pride weekend) to my family of origin. I hadn’t introduced my family to a partner of mine in nearly 7 years, and A. & I had only been dating for about 6 months at that point. But the relationship definitely felt solid enough to bring him home and have him meet my folks. He was the kinda guy who had already introduced me to his mom via the telephone and facebook, and he wanted to meet my family (especially, he said, especially my beloved Nana). He’d told me, repeatedly and insistently, that he wasn’t going anywhere, that I could let my very sturdy guard down and relax into what we were to each other. It was a huge fucking deal for me to bring him home for Xmas.

It doesn’t seem like any coincidence now that all of this was about two months after I got diagnosed with fibromyalgia. I wanted and needed a rock, someone to be basic day-to-day support — and then a rock showed up right when I most needed it, and also swept me off my fucking feet by being so charming and sexy and lovable. I’d been wanting that kind of consistency and dailyness from a relationship for a long time. I’d been feeling frustrated that I’d had a string of lovers over the years who were awesome in many ways, but not available for deeper, daily connection. But I also think that part of why I craved that so badly in those first few months after my diagnosis is that going it alone when you’re chronically ill is really fucking hard. It feels vulnerable to type those words, because I don’t want to be mistaken for saying that that’s why A. and I got together, or why I let him in as much as I did or fell for him as hard as I did. But I will say this: Having my rock and my steadiness vanish felt particularly brutal when it came to negotiating my disability as a single person after the break-up. Single & Sick looks really, really different from Partnered & Sick. It is not better or worse, and it’s not like I hadn’t been dealing with undiagnosed fibro for years before A. came along. But it is still different.

So this year, on Xmas Eve, I’m Single & Sick. And home alone, and thinking a lot about what building family with each other looks like. Who my rocks have been this past year – when shit just blew the fuck up, when I was the saddest and most crazytown I’ve been in about a decade. I have been thinking a lot about what reliability and consistency mean. What showing up means. What family means.

I’m not sad right now, is the thing. I’m contemplative, but I’m not sad. And I’m very grateful for what I do have, even with all the rough spots. Because I have an awful lot of amazing, beautiful people in my life. I have sweet, abundant, glorious love, even if I don’t have a partner. And I do have a family that treats me right, even if it is not often or always my family of origin.

Tonight, I’m thankful to Debbie & Saramoore for g-chatting with me when I felt lonely, to Ivy for taking me out for soup & gossip, to Fureigh & Emily for dropping by with a burrito & Philz & six months worth of catch-up yesterday, to Jos for texting me which Community episodes to watch, to Colin for calling me up with his latest dish, to Jenny for bringing over cookies & milk and telling me silly stories, to Toni for texting me prayers that made me cry. I’m thankful for Marlene & Dorian, for Carol & Robert, for Elisabeth & Meagan, for Austin & Zak, for Aidan, for Elana, for Jayvin, for Wolf, for Tobi, for Melissa, for Yalith, for Rose, for Jakob. For so many other friends for being there when I’ve needed it the most over this brutal — but still wonderful — year.

I’m thankful that I can reach out to my friends and that they reach back to meet me. I’m thankful that my friends reach for me when they’re sick or scared or lost. It means something, this web of family we build with each other. It gives me a lot of hope.

Happy Xmas if you celebrate it, folks. Please, please be kind to each other. We’re all we’ve got.

Edited a couple days later to add this Addendum. Thanks so much for all the love, folks. xox

I was on the phone with a friend earlier and I was like “The thing about having a rough time emotionally is that it’s sort of easy enough for me to just soldier on and compartmentalize it and get my work done and then just deal with it later. But, well… You can’t really compartmentalize your body, can you?”

This has pretty much been the lesson of my last year, esp. since the fibro diagnosis.