I write you from the hallowed halls of Terminal 3 at O’Hare International Airport, awaiting my return from the annual woodsy queer bonanza known as A-Camp. We had a glorious time workshopping, Variety Night-ing, and fleeing sudden thunderstorms, and now I’m prepping for the notorious Camp Comedown. This volatile period often involves physical illness/rebellion by a body you’ve neglected for a week accompanied by feelings of heightened disgust with the patriarchy, and it can be a rough ride. So to help ease us back down to earth, this week’s Queer Crip Love Fest features a bona fide A-Camp love story.
Al is “a fat, disabled, terminally ill, cis, Jewish lesbian” who works for a women’s geek interest site and had this to say about her partner, Katie:
“My partner and I met at A-Camp in 2015. We were instantly obsessed with each other, but she pursued me much more. We Skyped constantly, then we started dating, and now we live together! There is this moment, it’s just a second, between when we’re acting serious and when she’s acting like a wild monkey. She tries to make me laugh, to force me to enjoy my life. She is radiant light and I want to be blinded by it.”
May this sweet recounting of camp romance guide you through a truly disorienting time. Hang in there, friends.
Tell me about your work!
I am co-editor of the games section of WomenWriteAboutComics.com. I started the section almost three years ago and recently hired my co-editor (who is INCREDIBLE) because my day job had become so demanding. Now I’m mostly handling the logistical aspects of the section (soon to be its own website), while spending my days as a Director of Communications for a really great nonprofit, OneTable.
How’d you get into gaming? As a relative outsider, I’m always curious how women in gamer and geek culture navigate that space.
I’ve been gaming my entire life. My parents were very young and very poor. My dad was still a teenager when I was born and he had a Super Nintendo from one of his friends. As soon as I could hold the controller I became addicted to gaming.
For a long time I wasn’t really cognizant of how treacherous the waters can be for gamers who are not cis hetero white dudes. I played mostly one-player games and wasn’t interested in joining the world of online multiplayer. It was when I started dating other gamers that the full scope of the gaming world came into focus. I suddenly became afraid of trying out certain games and of telling strangers that I played.
That’s part of why forming a games section at WWAC was so important to me. We have our own stories to tell and our own needs that are often neglected in mainstream gaming journalism. I’ve written for some of the bigger sites and they want a specific style and particular stories. I’ve chosen to not engage in toxic stuff and to help carve out space instead.
I want more of you and your partner’s origin story! It’s so cute and gay!
So! My partner, Katie, and I met at our first A-Camp where we were cabinmates. I had very recently been diagnosed with Antisynthetase Syndrome, which can be a devastating disease. It had been made clear to me that I might not make it to 40 years old. I was still processing when I got to camp and was looking forward to sort of a temporary reprieve from what had been a grueling diagnostic process.
The first night at camp we talked about what we wanted to leave behind for the duration of the trip. I told everyone about my illness, and about my fears surrounding it. I remember clearly announcing that I was not interested at all in finding someone to date. And, in an abridged version of this story, Katie and I both eventually left other relationships after months of daily Skype calls to be together. For the first while I was flying back and forth from Chicago to D.C. to spend a weekend here and there with her. It was never super stressful. We just fit. And our Skype dates went well into each night.
When she moved across the country to live together, it just worked immediately. We’re very similar in ways that matter, even though almost none of our interests overlap. (We’re also both slobs, which is important. Having just one slob in a relationship can be a struggle.)
At our second A-Camp, I spent a lot of the trip in bed. The travel was very hard on me, I’d gotten much sicker, and I ended up with a migraine. Katie reported back to me on all the activities I wanted to know about and was great at checking in without making me feel like I was bringing down the mood. Then, in our cabin’s Feelings Circle (totes normal), I shared that I was alarmed by how fast my lungs were breaking down and when it was her turn she told everyone that she was in it (our relationship) for good for all the eventual sponge baths and until I drew my last breath.
Like… she’s the love of my life. She makes me feel more seen than I’ve ever felt.
Did you go to camp expecting to meet someone? Did you feel like there was pressure to do that once you got there?
There was no pressure to find a relationship, but, for me at least, there was more opportunity for queer romance than I’d ever been faced with before. I had fully planned to just have fun and maybe make friends.
“I am learning to deal with my illness. It is swift in its changes to my body and my ability to do the things I once did. I am having to learn to be gentler with myself, to let go of things I do not want to do.”
I’m curious about the interaction between your relationship and your disability, especially its progressive aspects. Popular media like Me Before You romanticizes death as a form of liberation from disability, leans heavily on the idea of a nondisabled savior as part of that process, and goes on to make hundreds of millions of dollars worldwide. How do those kinds of narratives make you feel — do you relate to them, do you feel they represent you, or is it the opposite? How have you and Katie talked about those issues?
This is such a complicated and interesting question, and absolutely one of my favorite topics. My version of my disease is affecting me in a couple of ways: my lungs are failing, my muscles are breaking down, and I am constantly fatigued. Since it is a progressive, chronic illness, I am becoming “more” disabled with time.
My mother has been disabled for most of my life. She’s battled with a lot of complications of diabetes since childhood and became blind when I was very young. I grew up thinking disability looked like a very particular thing. I hadn’t yet met all of the incredible people I know now who live with disabilities and are happy and healthy. We didn’t have access to a lot of the resources that I now know exist (and that are at risk under the current government).
So no, I don’t see myself in any media narratives. Characters are given terminal illnesses either to kill them off or miraculously save them at the last minute. It’s never clear that sometimes terminal illnesses take a long time to kill you, that there’s so much life and joy and pain and fear and fun and frustration between diagnosis and death. Katie and I talk about this a lot — specifically about how much becoming increasingly dependent on her is going to suck, but also how much I love being alive.
How have you and Katie negotiated the reinvigorated healthcare battle? My girlfriend and I have had to have some Real Talks about where we’ll be able to live and all that, and it can get kind of scary, as I’m sure you know.
Well, it’s made me terrified of losing my job. Which, due to the progressive nature of my disease, eventually I will. I don’t know what we’ll do then. It’s a dark spot, a black hole. And while being together makes the terror less lonely, it doesn’t stop being terrifying.
I am learning to deal with my illness. It is swift in its changes to my body and my ability to do the things I once did. I am having to learn to be gentler with myself, to let go of things I do not want to do, to give up some of my favorite things (anything not on the autoimmune protocol diet, for example) in the hopes that it slows the steady march of my disease.
Also, I am happy. I’m in love. I love my jobs. I know one day we’ll need to move out of our dream apartment because I won’t be able to walk up the eight steps to the door. I know one day I’ll have to give up most of the work I am energized by because I won’t be able to stay awake long enough to be “productive.” And I know that I might be facing that day much sooner than I hope I will. Yet my life is so full of reasons to celebrate and to despair. You know, it’s life. I wake up each day in pain and discomfort, knowing it is likely the best I will ever feel. It makes me feel loved when I know that’s enough. That even though I can’t promise her a long life together, our time is enough.
“We live parallel lives that we choose to tangle together with love.”
Do you face a lot of misconceptions as a disabled and terminally ill person in a relationship with someone who is not? What is one thing you wish people understood about your dynamic?
Ha! I think people who don’t know us at all sometimes imagine she’s in a caretaker role. That’s simply not the case. We’re both busy people with very different and time-consuming interests. We live parallel lives that we choose to tangle together with love. Honestly, if anyone’s naturally the caretaker it’s me, not her. This year she declared to our group of close friends that she planned to be there until my lungs finally failed felt like the only moment in the entire world.
So what does love mean to you?
Oof. Well, I think it’s meant many things to me over the years. I have a lot of emotions and 90% are love. In my early twenties I fell in and out of love often, always desperate to remain friends and stay connected with each of my exes.
Then I was in a series of more serious, more long-term relationships and love seemed to mean that I continued to choose the other person and invest in our relationship. Now, not only with Katie, but in all of my relationships and friendships, I believe it’s something else. It’s a comfort and a choice, but also a surplus. I feel so whole on my own, now that I’m growing more into my skin, that love is a happy bonus.
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