Pride started as a riot. And since then it’s been somewhere between a protest and a party. What if this year, for me, Pride Month is about figuring out how to take up space and find my seat at the table? In other words, about finding my Pride?
These days, I take up space mainly by writing. I have dealt with chronic illness and pain for decades, but things came to a head about two years ago, leaving me far more disabled than I had ever been. Now, between my mobility issues and my vulnerability to COVID, I don’t meet a lot of people face to face. But in the last two years, loath as I am to admit it, my writing has amassed a small audience. And so when I think about who I am as a person and who I am becoming, it’s in the context of that writing. Writing is where I express who I think I am in a given moment. It’s how I take up space. So the question of what to write about in a particular week is an important one for me. So. What to write about?
I have about three other essays in the works right now. But it’s been that kind of week. Or something. It’s the kind of week where I can’t get out of my own way, or out of my own head to write. I’m used to writing as a physically painful process and I get that. It’s okay. But outside of the physical pain, writing is something that I do because I love it. Because it brings me joy and satisfaction. Even though sometimes (okay, often) I stress about it while I’m doing it. And after, while revising and editing. But even with that, it’s a happy thing.
It seems I’ve had more than a few of those weeks lately. Where I start writing about something and another thought gets in the way a little too much for me to keep going. Or whereI feel like I have to write about something terrible that’s happening in the news that day or that week rather than something that is hopeful or joyful or even funny.
I Would Like to Write About…
I was kind of looking forward to writing something for Pride Month about queer joy or something positive. Definitely something that would feel hopeful to me, because I’ve been struggling so much. Maybe a listicle of some sort. Something that could let us laugh a little bit. Or even checking in this week with a new Writers on Writing piece, which Adam (my editor) and I had been talking about. It’s been a few months since I did one of those, and I’m still in many ways a writing student. An emerging writer. So it makes sense that every few months it’s helpful to check in and see where I’m at in discovering my own process. And there are always big questions that I want to untangle the answers to.
But I have to be honest. I have to be honest with myself. And I have to be honest with Adam. And I have to be honest with anyone who takes the time to see what I might be trying to explain this week.
I have things (in writing but mostly elsewhere) that I want to do. Some that I need to do. And lately I’m too tired or too sore to do them. Sometimes both: too sore and too tired.
Injuries versus Chronic
My knee hurts because I injured it. That pain is to be expected. Pain beyond my customary day to day experience is difficult to deal with. Just like it would be for anyone. There’s the baseline, the every-day-I-expect-these-things-to-hurt levels of pain. There’s the anticipatory pain. That’s the stuff I know has a tendency to leave me hurting, or the things I have to do but that might make things hurt. I can plan ahead for that. Leave myself what I think is enough time to do the tasks. Build extra rest into my schedule to recover afterwards. Make sure I have extra pain medication, or stronger pain medication, available.
But when I injure myself? That’s a different sort of pain. And while the plans for physically managing that are the same as everything else, it still steals my mental and emotional energy from other things. I have to spend extra time managing symptoms. I have to take extra time to do things. And consider alternative ways to get done what I need to do. And all of it eats into whatever time I give to myself just to enjoy things. It leaves me less space for just living my life.
I’m not even really considering the worries about what long term or permanent damage an injury might do. Because that would mean thinking about things like how my hands have been feeling for the last few weeks.
I Base my Routines on a Kind of Status Quo… So What Happens When The Status Quo Shifts?
Up until recently, most days, I’ve been able to grip my walker and get around. Some days with more pain than others. And on those bad days, I switch to the wheelchair when I need to. Even though the cats hate it. Even though I hate it. But the more discomfort, the more pain I feel in my hands, the less I can do that. Switch back and forth. The baseline pain goes up, and I will eventually have to give up something. Will I get to a place where I have to choose between doing things like using my walker most of the time or being able to hold a knife to cook? Will I eventually get to a place where I might not be able to maneuver my own manual wheelchair?
I can’t even describe how frightening that thought is. Because, at least with the manual chair, it might be heavy, but it can be folded and stashed in the trunk of a car or the back of a minivan. I can go places with friends. Take a regular cab or an Uber. Get around from place to place with a little extra effort from whoever I’m going with. A power chair, while it would give freedom in some ways, is also a really uncomfortable prospect in some other ways. Transporting it is much more challenging–even the ones that can be disassembled enough to put into the trunk of a car.
But as I think about the future, it’s something I have to think about. And as hard as I’ve tried to see my mobility aids–especially the wheelchair as something that empowers me by allowing me the freedom to experience things that would have been overwhelming before because there just weren’t places to sit down or to rest, because the destination was too far from parking for me to manage the walk from parking lot to destination and then to walk through whatever the experience was, I struggle with not simultaneously feeling loss.
How to Take up Space… Where I’m not Wanted
Going places requires at least as much calculation, sometimes even more than it did before. What vehicle can I get into and out of? Will the vehicle hold the wheelchair? Can the person I’m going with lift the chair or push the chair as needed? Is the area accessible–the ground paved and level, what’s the restroom, parking, curb cut situation? ‘
It would be enough if I were increasingly coming to terms with the fact that my body is not a safe place for me to inhabit. Right? That’s enough angst for one person to have to deal with. But on top of that I have to deal with the fact that the wider world isn’t safe either. And that hurts worse, because it’s more deliberate. Nobody decided that parts of my body would fail. But someone (a lot of someones) decided not to design buildings and streets in a way that would be safe for me. These little ways I’m made to feel unwelcome when I go anywhere at all. If I were at someone’s house and something like this happened, you’d call that person a bad host. But what do you call it when it’s everywhere?
An Example of the Thousand Little Indignities
I once tried to go into the restroom in a diner in my wheelchair. The women’s restroom was at the end of a small, narrow corridor. The door opened outward. There wasn’t really enough room to open the door, hold it open and turn the chair 90 degrees to get into the door. And if that wasn’t enough, someone had placed a bench and trash can just inside the door. Exactly how am I supposed to roll into that space without crashing into one or both of those objects? Not happening.
Thankfully I was ambulatory enough to be able to stand up, walk through the door, push them out of the way and have someone move my chair into the restroom so that I could go into a stall and do everything else I needed. I’d love to say this is unusual. But it isn’t. It’s just sort of normal to have to try and navigate the world that isn’t made for wheelchairs but not only is it not made for wheelchairs…people add obstacles and impediments to make it even harder to move within the environment.
No, I’m not “Faking” my Disability (OR my Bisexuality, but that’s Another Rant)
And I haven’t mentioned the way the world seems confused by ambulatory wheelchair users. People who can walk or stand some of the time but still use wheelchairs at other times. We seem to confuse people. Or at least lead many people to assume that we’re faking it, or not really disabled (or not disabled enough.) While the physical barriers to wheelchair use may be frustrating, it’s the people who make it worse, whether it’s their pity or their judgment.
Issues like that make me even more reluctant to leave my home. And then add COVID on top. Right now I’m dealing with a relatively minor illness. And I’m scared. Because the possible need for an actual, face to face visit with a health care provider is really scary. You would think just because of the potential for bad news, which is a factor, of course, but not even the biggest worry.
How to Take up Space Despite Isolation
The possible risk of COVID is still far too high for me to take risks. Which means I continue with masks and isolation. No matter how much I’m craving simple, small treats. Little signs of what used to be normal. A fountain soda. An ice cream cone. The isolation is really hard to deal with after a while. But so are the risks of breaking that isolation. I’m so grateful for Zoom gatherings and long phone calls. And for Monday Night Trivia hosted by my friend April Fresh.
And as I think about things like isolation, and what it does to me, I think about something Adam wrote when he was visiting family in India. Something that I cried over then and that breaks my heart even now. He wrote, “And here I am chilling at a coffee estate. Additionally, I write this knowing that Erika will edit it. And knowing that I am doing things she, with the limitations on her mobility, cannot. Forget just showing her the other side of the ocean and all of the money and manpower that would entail. I want to show her the top of a hill.”
How to Take up Space When I’m Feeling too Sick to Write or Edit
I keep thinking of how all of this stuff I’m going through affects the work we’re doing. When I need more sleep, my pieces get to him later, meaning the editing timeline is shorter, and that puts pressure on him. Or less time to do the editing I need to do which means that I worry more about what we’re putting up. It means rushing to get work done when there are website updates that need to be made.
Last night I finally finished a project I’d had in the queue for two months and I’ve got to hurry up and get another one done in the next two weeks. And how can I not be grateful for the support when I’m honest about not feeling well. When I say I don’t know how I can do the work I need to do and focus on getting better and Adam responds: “then let’s focus on the getting better part.” And is still gentle with me when I snarl back at him about the idea of “getting better.” We’re acculturated to seeing our worth as a reflection of the work we’re able to do.
I know I do the work. But I do it a lot more slowly than I might like to. I take on a lot less than I wish I could. I feel this pressure to do more, and it comes mostly from me, and not from outside.
So all of these things that have been on my mind, that I’ve wanted to write about, like my Dad, and Pulse, and this incredible Twitter thread about the Names Project Quilt… get shifted aside. And I’m not writing about the value of allyship that isn’t performative, which is something I’m thinking about a lot this Pride month… especially this year when the queer community is experiencing such a huge number of legislative attacks. When Florida and Texas are attacking parents who take their children to see drag queens.
All I can do is hold tight to these lyrics from the musical Falsettoes, which i first saw when I was in high school:
Life is never what you planned
Life is moments you can’t understand
And that is life
Holding to the ground
As the ground keeps shifting
Trying to keep sane
As the rules keep changing
There’s so much going on. And I feel guilty focusing so much energy on my own misery instead of doing more for other people. But when I’m feeling icky, or when I’m not paying attention to my own needs, am I really able to be a good advocate for others? If my energy is depleted by just doing enough to get by, what am I able to do for others? And really, what’s wrong with needing to acknowledge that I do have to take care of myself to be as good as I can be at all the things I want to do? And here’s a radical thought. What about the people who are like me who I am advocating for by writing this very essay?
Pride started as a riot. It started because people were tired of being attacked and excluded simply for being who they really were. And a big part of queer activism has always been about taking up space. About taking a seat at the big table with everyone else and speaking up. Last week I talked about learning to celebrate my whole self. I still don’t exactly know what that means. But maybe that’s what Pride month is about for me this year. About figuring out how to take up space. To claim my seat, wheels and all, at the table.