am sitting at my keyboard, breathing through a pain spike, and pushing through exhaustion.
This is a very standard moment for me the day after I leave the house.
Leaving the house — this is something most people do every day, probably multiple times a day, without thinking much about it. Something I used to do, in just that way. Something that didn’t use to involve careful hording and spending of spoons, and a cane and CBD edibles in my bag, and stepping sideways, slowly, up or down any steps, and careful planning of how many times I’m getting in and out of a car, and how long I may have to drive, or stand, or walk, or sit on a hard surface. I remember leaving the house, 2 years and 1 surgery ago, just because I needed to or wanted to or had an urge to be outside.
Leaving the house has become rare, and only sometimes wonderful. A trip to the beach rather than a doctors appointment, a stroll through the rose garden, even if at a pace that would frustrate a snail, a theater date with my kind and patient beau.
I have had what is, to my current primary doctors’ best assessment, reactive arthritis since I was 18. I just turned 49. For the first 20 of those intervening years I used my joints in every enjoyable way I could access. Dancing, hiking, biking, camping, fucking, swimming, stretching, martial arts, making art, making space for myself in the world, fighting for space for others. I also used them cleaning and lifting and cooking and hauling for the money that kept me housed and fed and medicated. Not western medicine, which my body rejects immediately, but weed. Not the nicely curated specifically suited lush Oregon medicinal weed I now enjoy, but still, a magic plant to manage pain and anxiety and depression.
Knowing I had survivor trauma but unable to access mental healthcare. Knowing I had some sort of arthritis but unable to access physical healthcare. Knowing I had already lived longer then I expected due to depression and self-harm and a world caught up in nuclear arms race, and that I wanted to make the most of it.
I could feel the impact building up on my body over the decades, but pushed on, valuing my body most for being burly. For turning the curvy and compact frame I had into a source of pleasure and strength. For the looks of amazement and appreciation when I won the arm-wrestling match, tossed a bale of hay, lifted a huge bag of clay or box of furniture parts or the cute queer I’d been flirting with over my shoulder. I had not only survived, I was thriving, and when the cold wet stabbed my shoulders or a long night of dancing throbbed my knees or hours of writing cramped my hand, I breathed through it. Called it temporary. Changed the subject.
I fought so hard for this body, to take it back, to live inside it, to forgive my nerves and fears for what felt like betrayal. To forgive myself for not knowing how to save myself. For all the ways I found to put myself in danger afterwards. Too much sorrow to live, too much rage to die. Wounds abraded rather than tended because giving in seemed inevitable and fighting back never worked. Between the ages of 16 and 18 I slept with approximately 50 men. Approximately because my disassociation was the worst in those 2 years. Men, because I had given up on finding queer women like me, and the belief that they’d want me if I did. Even in the depths of my self-destruction, I still used protection because pregnancy was nothing I wanted or wanted to risk. The last man I slept with broke through the condom in his Jack Mormon determination to make the most of sex before giving it up and secretly passed on multiple STDs that he had never quite cleared up, or bothered to tell me about. When I got my period I figured I was safe, until a routine PAP turned up pelvic inflammatory disease, gonorrhea, chlamydia, and HPV.
I thought the worst betrayal of this was the per-cancerous cells on my cervix that I had to have biopsied and removed by laser surgery, procedures he refused to pay for until my mother threatened to out him in the newspaper put out by the college he’d just been accepted to.
Bleeding and furious and alone on a table in the free clinic.
Doctor staring down at me with judgement on his face.
Legs spread wide for another man who didn’t really see me, and didn’t really care how it felt.
Quarterly PAP exams for the next 4 years to make sure my body didn’t retain and twist the HPV into cancer, deep inside my vulnerable center where so much hurt had already landed.
I thought the arthritis that came on after a bout of the flu later that summer was just another harsh blow. Equally horrible but not at all related. Certainly not a lifelong affliction that would challenge not only my quality of life but my mobility, my sanity, and my livelihood.
“Reactive arthritis develops because of an infection that occurs in another part of the body. Even mild infections, which may go unnoticed, can cause reactive arthritis. This may be particularly true with chlamydial infections, which appear to be a rather frequent cause of reactive arthritis.”
In most cases, for most people, it’s a matter of a few weeks or months of inflammation and pain that then resolves, but in rare cases, it can develop into a chronic condition. It’s not the only way my body is challenged in leaving the house, either. I have a rare allergy to alliums (garlic and onions), to artificial fragrances (Multiple Chemical Sensitivity), to coconut milk and hazelnuts and almonds and wheat and caffeine. I have some rare thyroid dysfunction that causes a Charley horse in my pelvic floor if I don’t regulate it carefully with tiny pink pills every day.
‘Rare’ is a word I’m starting to actively dislike.
Three years ago after a sudden onset of pelvic pain and a series of uncomfortable tests, I was diagnosed with fibroids, one of which was dangling outside my uterus on a stalk which would twist and cause sharp spikes of pain and ultimately descended to press against my pelvic floor. Two years ago I had a hysterectomy to remove both the fibroids and the possibility of them returning, which was otherwise quite likely. I never expected to look forward to a surgery, but anything that would ease the pain in my pelvic floor, which was spiking up to an eight or nine on my personal pain scale (where four is pretty standard) was looking pretty good. After the surgery the pain was different, but not gone, and it still isn’t. Quite possibly never fully will be.
If I walk too far, stand too long, sit on a surface too hard, I start to limp. The pain spreads through my pelvic floor and into my lower back, sometimes even into my thighs. It’s a betrayal I literally can’t get away from, and it’s kept me largely housebound for almost two years now.
If I leave the house, I have to negotiate the possibility of intense pain, a migraine and/or impeded breathing if I have to share space with someone’s cologne or Febreeze or Lysol or air freshener or cigarette smoke, and I better bring a snack, because I can’t eat out anywhere.
Home has become both sanctuary, and isolation.
This aging crip body is a gift and a burden and a joy and a sorrow and always a lesson. For me, but also for my partner, my co-workers, my health care providers, my family, my friends, my Lyft driver, the producer of the event that invited me to read, the stranger smoking a cigarette outside the venue door. Quite possibly the person reading this now.
The ways a body can hurt, can strain, can refuse to function, can be impacted by what seems simple but rarely is. The ways my body needs to be cared for, and all the ways I have to negotiate that. All the voices of authority I have to contradict. All the people I have to educate. All the times I have to choose to stay home to ward off exhaustion and frustration. All the times I choose to go out anyways and all the ways I pay for it afterwards. My hope that this will someday change is a tiny touchstone, rubbed smooth by frequent quiet fervent wishes, hidden deep in the pocket of my heart. My surety that I have to live as if it won’t, as if today is exactly the way my life looks, is a battered suit of armor shaped by all the fire in my queer survivor gut.
I’m sitting at my keyboard, breathing through a pain spike, and pushing through exhaustion. I’m rallying to get ready for a water aerobics class, the one form of exercise currently available to me that doesn’t hurt more then it helps. I have to start with an anti-chlorine lotion to help stave off a chemical induced reaction, and give myself plenty of time to get into my suit and water shoes and outer layers and down the stairs and into the car and out of the car and out of my clothes and into the pool and hope that I have enough left for 45 minutes of movement that feels almost like the body I am mourning for. The one that can leap and twist and stretch without the gravity outside or the pain inside making every motion a risk. I am hurting, and I am exhausted, but I am leaving the house.
Footnote: This article was written before the COVID-19 pandemic began, and I am obviously not going to the pool, or anywhere but short walks in my own neighborhood to protect my health and others and do my part to #FlattenTheCurve. As I watch how people across the globe struggle to come to terms with what it means to stay isolated, my compassion and my frustration grow exponentially. Compassion, because I know how hard it is to adjust and figure out how to get your needs met with less options and more barriers, to manage the often-overwhelming combination of fear and loneliness and lack of control. Frustration, because this is and has been true for people like me who are disabled and/or living with chronic pain/illness, and all of these accommodations that we’ve been asking for and being denied — like telecommuting, online classes, and consideration of limited resources — are suddenly available now that other people need them, and that now we are having to fight to not be written off as a poor investment of medical resources. Please extend your compassion and activism beyond this moment of crisis. Fight for our rights and access the way you are currently fighting for your own. Remember the impacts of isolation, loneliness, rationing and the failings of health, social, and governmental systems and do all you can to change that for everyone, in a lasting way.