Part One

content notes: surgery, hysterectomy, hospitals, menstruation, suicidality, self-injury, sex and masturbation /// also, images of bruises, scars, stitches, needles, & vials of blood, all mine, not self-inflicted

I began writing this piece after I’d been home from the hospital for a week, and my prescribed bedrest felt (feels?) akin to a retreat. I’m accustomed to pain, to staying in bed, to watching the world happen through my window and my cell phone, those magical rectangular structures acting as portals and barriers at once. But to be given a timeframe, to be given a predictable outcome, is new to me. To feel pain lessen day-to-day is new to me.

Early mornings are when I feel best. I live a quiet, loner life, and I like to be out of bed by 8:30, listening to the birds and feeling the potential of the hours ahead. One of the most satisfying feelings to me is waking before my alarm and being ready to get up. Since surgery, I’m only able to sleep on my back. For most of my life, I haven’t been able to sleep on my back without having nightmares and sleep paralysis. I don’t know what it is about that prone position, but it feels unsafe. I worried that because of this, I wouldn’t be able to sleep at all, and my body would refuse to heal.

Instead, with minor interruptions, I’ve been sleeping through the night. Sometimes I wake up to pee, and I stumble crookedly, medicated and disoriented, to the bathroom and back. It takes longer than usual because sitting up and getting outta bed while refraining from engaging core muscles is difficult, and I’m not awake enough to be mindful of what my body can and cannot do, and how slowly I must navigate these movements. One night, my throat was so dry I woke up choking. Coughing is one of the most painful things post-hysterectomy – it feels like organs and flesh are being torn apart, threatening to rupture. There’s risk of hemorrhage, so I’m being exceptionally delicate with my body.

{image description: My first portrait post-hysterectomy, resting in hospital bed. The head of the bed has been raised, holding me in gentle repose. My eyes are closed but my purple glasses are still on, and the expression on my face is one of rest and relief. I appear to be naked under my blankets, as my loosely-tied pale blue hospital gown has slipped, exposing my bare shoulders. The walls are beige and the bedding is various shades of blue and white. A breathing tube is inserted in my nostrils, and multiple needles are piercing the tops of both of my hands, held down with multiple layers of clear medical tape, with cords trailing along my arms, over the grip-handles at the edges of the bed, and connecting to a portable trolley of multiple machines and IV bags filled with clear fluids. My arms are resting across my chest and stomach, with multiple tattoos visible, including my ‘TAKE CARE’ knuckles. Lilacs peek from the edges of the slipped hospital gown. There are three plastic hospital bracelets affixed to my right wrist. I’m allergic to the laminate, so my wrist will soon be red and itchy. My closed diary, softbound with rounded corners and a lavender elastic holding it shut, the cover of which shows colourful, abstract-ish purple, pink, and red florals, is placed on my lap.}

This post-surgery hospital-bed portrait, taken by my mom at my request, is one of my favourite photos of myself. Altering my body – be it through appearance (hairstyle, tattoos, cosmetics), shape (how my clothes fit, my various postures as I sit or walk), movements (holding onto my cane, practicing yoga asanas, being mindful of facial expressions), or what-have-you, when done with a sense of autonomy, presence, and desire, always brings me closer to feeling more like myself. This is the first form of surgery I’ve experienced that holds considerable meaning for me, that alters the way I experience and interact with my own body, and alters the way I feel inside of and about my own body. I’ve known since the moment I awoke in the middle of the night at age eleven soaked in the surprising, disturbing, copious amount of blood of my first period that this set of organs did not belong within me. That this wasn’t supposed to be happening.

After that, it took me a decade to find the courage to ask my then-doctor for a hysterectomy (though it’s possible I “joked” about it beforehand as a passive way of assessing his reaction), and another decade until a different doctor would refer me to a gynecologist who’d perform the operation I’d dreamed of since childhood. I was a suicidal and self-injurious since single-digit-ages creature, and experiencing menstruation worsened my yet-to-be-verbalized dysphoria, substantially increasing the severity of my yearning to die or disappear. Aside from a six-year gap in which I was prescribed Depo-Provera, a form of hormonal birth control that’s injected every three months, and which exacerbated my chronic pain condition to a degree in which I was no longer able to walk or to experience one second without excruciating pain, the dysphoria of menstruation persisted without alleviation until my final period, when I felt delightfully celebratory, knowing it would be my last.

{image description: Selfie. Visible from my chest upward. I’m wearing a long-sleeved black cardigan over a fuchsia floral dress with a collar and white buttons, top button left undone. My deep violet almost-shoulder-length hair is in pigtails, and one of my barrettes – bright lavender plastic Goody-brand with three flowers – is visible. I’m wearing purple glasses and smiling slightly, with my 30-something well-earned wrinkles and creases showing slightly around my hazel eyes, untweezed brows, and the corners of my mouth. The background shows lavender walls, lavender closet doors slightly ajar, blurred stacks of black and red milkcrates lined with books, and a few small shelves of found scrap wood screwed into the wall. Hanging on each knob of the closet doors are a lavender face-mask that I use for multiple chemical sensitivities on the left, and a black totebag with the classic yellow Nirvana smiley-face on the right.}

{image description: Another selfie. Similar angle and details as described above, but my body has shifted, so the background is different. Lavender closet walls behind me, a glowing washed-out brightness to the left, where the sun is shining through my open window. The top of my dark wood nightstand is visible, with a white reading lamp and various mint plants in purple pots on top, and a lavender handkerchief draped over the edge. Beside that is a small white shelf with more plants, and small wooden crates holding plants and Hello Kitty dolls stacked on top. Fake red, pink, and white roses hang from the end of a matte grey curtain rod. To the right, a black trenchcoat is hanging from a hook beside the closet doors.}

These are the final selfies from before being operated on. I wasn’t doing anything special the day I took them, but wanted to capture a chapter of my life that was finally, thankfully, coming to an end.

Now I have four incisions on my stomach, with little white stitches holding them closed. I have more stitches inside my vagina, keeping my organs from falling out of my body. With my hysterectomy, there was a risk of tearing open the edge of my vagina as my severed uterus, cervix, and fallopian tubes were pulled out, thus requiring more external stitches. Thankfully, no tearing occurred. It’s not just that I didn’t want that to happen for the sake of not having that happen – it’s also that I’ve been diagnosed with vulvodynia, a chronic pain condition of the vulva, with little known cause or treatment, and I don’t want the pain to return. The pain of vulvodynia has been so bad in the past that I’d sometimes fall to the floor, feeling like fists and steel rods were punching and pummelling my labia, perineum, pubic bone, and inner thighs, as though my crotchal region were a punching bag.

Though the process of convincing doctors to allow me (and why do people who don’t know us get to decide whether or not we have permission to alter our bodies???) to have a hysterectomy was as equally invalidating and crazy-making as my history of attempting to access care for mental illnesses and chronic pain and fatigue, the day of the procedure itself was very different. Professionals were kind and considerate. They apologized for the nuisances of me being required to answer the same questions over and over, and they didn’t treat my body like an object on an assembly line when they checked my vitals or inserted needles to draw blood and hook me up to multiple IV’s. They didn’t jab needles into me carelessly, nor shrug off my concerns and questions. They didn’t try to interrupt me or hurry me up when I was answering their questions or offering further questions, thoughts, and observations. They didn’t speak to me condescendingly. When I walked slowly, they didn’t try to rush me.

{image description: My left hand resting on a warmed-up white towel draped over the arm of a chair, fist clenched to reveal my veins. A tattoo along the edge of my hand is visible. Black ink in my own handwriting, which reads do the opposite. The i is dotted with a tiny heart, and there’s a small sprig of forget-me-nots stemming from my wrist under the text. A nurse’s two blue-gloved hands are shown: one is firmly holding onto my wrist as the other grips a needle between thumb and forefinger, inserting the tip into the top of my hand, keeping steady to guide it deeper. Blurred to the left side of the image is a small brown table with two empty, transparent vials with pink lids on top, and some plastic debris from the containers the needles were sealed within.}

My view as this was happening was of the hallway behind the nurse, and other partitioned rooms where blue-gowned patients awaiting various surgical procedures were on beds or chairs, accompanied by a parent or partner. There was very little privacy – it wasn’t difficult to hear one another’s conversations with doctors or loved ones, even without trying. I’d been directed to this small space to take off my boots and all my clothes and change into a gown, tied at the back, and blue elasticized paper slippers, then instructed to pull the curtain closed to change, and open it when I was finished to let the staff know I was ready to be seen. Although I prefer to attend appointments alone, being anaesthetized and operated on requires the patient to bring somebody with us – to drive us there and home again, and to keep us company if wanted/needed. Also, sometimes it’s comforting to know there’s somebody waiting to see you while you’re knocked out and cut up.

I felt safer bringing my mom into each room with me as we wound through the space instead of asking her to stay in the waiting room because hospitals are like mazes to me, and I was afraid of becoming lost, disoriented, stressed, or triggered. She looked down at the floor as I changed, and then we spent a long time waiting for somebody to come back after she opened the curtain for me. We traded stories and advice, and I took more pictures. She told me about her own hysterectomy, revealing information I hadn’t yet known. After the nurse introduced herself and explained what was happening next, my mom exited and hid around a corner as my blood was drawn. She’s squeamish.

{image description:My right hand resting on my lap, with a white plastic sleeve clipped to my fingertip as my heart rate and blood pressure are checked. There’s a grey cord attached, extending out of the frame. I don’t know the name of this device, but it’s become very familiar to me over my years of hospital admittances. My nails are short and bare. It’s rare that my nails are unpolished, but a total lack of cosmetics is required for surgery. While staff told me this was to reduce risk of infection, my mom told me it’s so they can see if I’m turning blue. Morbid, yes! I wondered if this information had been intentionally withheld by staff, and then offered carelessly and without forethought of me freaking out by my mom, but I appreciated knowing. A couple days after returning home, I painted my nails a shade named Late Night Lilac.}

Following are five more photos from this moment, showing the needle at various stages of insertion, and vials being filled with blood. Also shown is the same small side table described above, but with an unwound blue tourniquet draped over the empty vials and torn packaging.

The nurse gave me consent to take these photos, including for her hands to appear in them.

Asking staff for permission to take photos during appointments often opens up a brief, though thoughtful, conversation around chronic pain and illness, art, and autonomy, as well as consent itself. Before I developed the guts to ask, I’d only take pictures when I was the only one in the room, and nobody else was visible through an open door or curtain, behind a desk, etc. I’d rarely use my cell phone in waiting rooms beyond sending texts and scrolling through Twitter, looking down at my lap as I did so, because I didn’t want anybody in the space to feel intruded upon, suspicious, or uncomfortable. I don’t like having my picture taken without consent, and I refuse to put people in the position of even vaguely wondering if somebody is taking their photo or filming them. If I’m alone, I’ll take selfies, but I never do so with others in the room because they can’t know whether or not my phone is on selfie-mode, nor who or what information is being captured in the background or surrounding areas. A medical and/or health care environment is not an okay place to have a camera visible, or to use one without consent. It makes people, myself included, feel anxious and exposed, and it creates the possibility for people to become distressed and triggered (which has happened to me on many occasions, and without providing specific details right now, I can assure you that it’s dangerous). Not to mention the extreme breach of privacy, confidentiality, and autonomy.

That said, I’ve come to take pleasure in these moments of discussion with medical professionals. Not only has the practice of documenting my appointments via photos changed how I experience them, and how my body and psyche cope with repeated instances of frustration, invalidation, and carelessness within institutions, but I get to witness health care workers learning new ideas and perspectives that were likely unexpected when they showed up for their current shift. These moments and shared exchanges might change the way they operate within these spaces, perceive the bodies and inner psychic landscapes of the people they’re providing care for, and conceptualize their own roles and responsibilities, and the ways they interact with patients. But even if all it does is momentarily interrupt the monotony for each of us, that’s something.

{image description:Taken in my bathroom at home. My left hand holding onto a white plastic rectangular package of SoluPrep Antiseptic Skin Cleanser, marked with the 3M logo on the top left corner, and containing black text indicating ingredients and directions for use. Seen in the background is a lavender wall, the edge of a lavender towel hanging from a hook, and an orange sheet of paper from an illustrated Dame Darcy calendar with pansies, roses, and the word ‘FEBRUARY’ in her infamous scrawl. A tattoo of a sprig of lavender growing up my thumb is within the frame, and my short thumbnail is unpainted.}

About two weeks before surgery, I had a pre-admission appointment. Not knowing what to expect, I assumed it’d be similar to the multiple consultations I’d been attending over the previous seven months. Instead, it was an intensive three-hour adventure, with dozens of sheets of paperwork (to be filled out partly by me, partly by nurses), multiple professionals consulted, five vials of blood drawn, and careful and detailed instructions given on how to prepare for surgery. It was also my final chance to ask questions.

Despite knowing for decades that one day I’d be granted this operation, and despite dozens of appointments with medical professionals about the procedure and the recuperation process, as this final appointment approached, more and more questions were coming to me. Some of them seemed so simple and straightforward, but I’d spent most of my life feeling dissociated from my body, so there were a lot of ordinary things I hadn’t even considered. Also, I’ve spent multiple, intermittent periods of my life feeling either asexual or sex-repulsed, so until recently, post-surgery questions about sex and my body either didn’t occur to me or didn’t feel relevant. But by the time the possibility of my hysterectomy started becoming more real, this was no longer true for me.

What kinds of fucking can I do and when?

What about fisting after I’ve healed?

What about clitoral stimulation and orgasms before I’ve healed / as I heal?

Will orgasmic muscle contractions effect the healing process? Will they hurt?

Will I still be able to squirt?

How soon can I have sex before surgery? The night before? The morning of?

One nurse, when I brought up sex and orgasms, said, “Don’t worry about it right now. You’re not gonna feel like it anyway.” I laughed inwardly. Um, you don’t know me. It was an offhand comment, a joke. Maybe she’d had a similar surgical procedure, or witnessed enough recoveries, that based on her own first- and second-hand experiences, my questions seemed absurd. Most people (I think, or I want to think) don’t invalidate one another intentionally, but certain comments can certainly be construed this way. Aside from that line, her answers were helpful, as were those of my gynecologist and my doctor.

Different bodies heal at different rates, and even the recovery timeline I’ve been given feels experimental. Despite the assumptions health care professionals might make about my sexuality, and their guesstimated prognosis for when I’ll wanna fuck, I was still taking nudes at the hospital both before and after surgery.

{image description:A yellow sheet of paper resting on my lap, with my knees in view. I’m wearing grey trousers with purple pinstripes. The paper is labelled ‘Preparing for Surgery’, with dates and locations filled out. My unpainted fingertips hold the sheet on my lap, with my lavender cane resting alongside. I rarely wear pants, but I have a thing for men’s trousers, and was grateful to find this pair at thrift store, with their subtle violet lines. I realized only a few days before my appointment that the tights I usually wear would be not only inappropriate, but pretty much impossible.}

One of my final memories before being anaesthetized was signing one more consent form. Permission for my gynecologist to take pictures of my uterus as the operation was performed! I was lying back as he held out the clipboard and a pen to me, oxygen mask affixed to my face. There’ve been multiple consent forms to sign throughout this process, and plenty more paperwork on top of that – this is the form that took them some time to dig up, since it’s not a request they receive often.

I’ve written about some of the reasons I take photos during medical appointments, and of talking to health care professionals about the medical-themed art I make, of which they are usually curious and sometimes even enthusiastic. Documenting my appointments through photography has changed my experience of these excursions, and has been helpful for my memory, too.

Capturing a photo of the organs being removed from my body is related, but different. Obviously I knew I’d be unconscious and inert, but I’d still been imagining this surgery from my own point-of-view, reclined on a bed/table-like contraption, looking down at my body as others leaned toward it, sharp implements in hand. In this visualization, I could see my exposed and sliced stomach, though I knew it’d likely be hidden behind a curtain, as gynecological exams tend to be. I imagined being numbed to the pain but conscious, holding onto my camera. I wanted this view held within a frame, to be able to recollect, re-visit. The ceiling, the lights, the scrubs, the flesh. I wanted close-ups, too. Scalpels, laparoscope, blood, veins. Steel, skin, latex / vinyl.

A lifetime of being told my body wasn’t/isn’t my own, of wondering what was/is happening beneath my skin, of attempting to reclaim something that shouldn’t have been taken from me, of seeing body parts only in diagrams, x-rays, ultrasounds, and MRI’s, had given me a strong longing to look directly at my own organs, to hold onto tangible evidence of them. There’d come a time when my uterus, cervix, and fallopian tubes would no longer be mine, and while I wanted them excised from my body, as the operation approached, I felt like there’d be a brief bracket of time within their being snipped, detached, and removed, before ending up wherever these things end up, during which they’d continue to exist and continue to belong to me.

This felt impossible to convey. These words still feel inadequate.

{image description:An odd choice for decorative hospital art. This painting was one of many in the long hallway leading to the surgical reception area. Painting shows a man in a red uniform with a staff and metal helmet leading a young, white-gowned girl to I-know-not-where. The girl is holding her hands to her face, crying. In the background, two women look on, appearing stressed and frightened. One woman, clad in black, holds her hand to her chest, while the other, a redhead, hides behind her, hand on her shoulder, lips pressed to the other woman’s collar. Both have worried eyes.}

During my pre-admission appointment, I asked a nurse – the same nurse who told me I wouldn’t want to have sex after surgery – about the possibility of taking a photo of my uterus. She said no before I’d completed my sentence. ‘No, no, no. Absolutely not. No.’ She shook her head vigorously and responded as though it were one of the most bizarre requests she’d heard during her career. Maybe it was. I felt slightly thwarted but undeterred. I knew she wasn’t the only or the last person to ask, that this wasn’t my final chance. There was time to prepare to ask again, to ask somebody else, somebody more involved.

Had I asked earlier, I might’ve signed the consent form before I was on the operating table. Still, it was another victory to celebrate.

Entering the operation room was the moment my hysterectomy began to feel real. A very brightly lit room with machines and screens everywhere. Since I couldn’t bring my cane into the operating room with me (objects are a contamination / infection risk, as are cosmetics), my gynecologist and my anaesthesiologist let me hold onto their forearms to guide me there. I felt vulnerable without my cane, dressed in a hospital gown, housecoat, and paper slippers. I also felt like this was an initiation.

I was directed toward the operating table in the centre of the room, and shown how to position myself and slowly lean back and lay down. I’d been introduced to each person involved in performing my hysterectomy, and now there were a handful of us gathered: the anaesthesiologist, multiple nurses all gowned and gloved, my gynecologist, and me. They let me wear my glasses until I was sinking into unconsciousness so I could see and understand everything that was going on around me.

I didn’t take any meds beforehand, yet I felt a distinct lack of anxiety. Before medical appointments, I usually take Tylenol 3 and Xanax. But this was one of very few times I’ve been in a hospital because I wanted to be, and since I’d wanted my hysterectomy for so long, I felt totally okay with being so exposed, with being examined, poked at, knocked out, cut up, sewn back. It was a joy.

My appointment was booked for 7:45AM, with a requirement to check in before 6. That meant my mom picked me up at 5, after I’d set my alarm and gotten outta bed at 3:30. Thankfully, although unable to consume food after midnight, I was allowed to drink water-based fluids up until a few hours before surgery, so I drank my usual black coffee. Heavy rain began to fall while I slept, and persisted most of the day. My mom had come from out of town to accompany me, and spent the night with a nearby friend. She brought me extra pillows, as I’d be required to hold them against my tummy during recovery.

It grossed people out when I told them that post-surgery, I’d have to hold onto my stomach each time I got out of bed to prevent my organs from rearranging themselves or rupturing. I thought it was pretty cool, even though I’m sure I winced the first time a nurse brought it up (and subsequently, as it came to be). And it’s true. I’ve been holding onto my belly not only when getting outta bed, but at most waking moments, and through my sleep as well.

I’ve noticed my organs shifting, an odd feeling. I can’t bend at the waist or engage any of my abdominal muscles. When I accidentally do, it feels like I’ll be torn up and bled out. So I hold onto my tummy when I shift my body, when I stand up or sit down, and I do not twist or turn to the side. When I’m sitting, standing, or laying down, I gently rub my belly, comforting the surface and hoping to heal my innards. My mind is constantly focused on the most infinitesimal feelings happening within my stomach. The way things roll, ripple, shift. What breathing feels like. Noticing when I’m tense, and slowly releasing.

My gynecologist, after the initial period of confirming my name, birth date, location, reason for my hospital visit, etc., required to be repeated once more before the patient has lost consciousness, and as the anaesthesiologist began to inject me with what he referred to as “happy juice,” asked me about my tattoos and encouraged the nurses and assistants to take a look as they prepared the room, my body, and themselves for surgery. Maintaining a conversation in the final phase of set-up is, I think, mandatory in these situations. I’m not sure why, and I’m sure it serves multiple purposes for each person involved, but I wonder if it has to do with reassuring the patient in case they’re feeling anxious, or assuring one another that no damage is being done as the anaesthesia is being administered. I wasn’t asked to count down from ten or anything like that. I remember feeling talkative and kinda giddy, telling stories about some of my tattoos, thanking each person around me for their work, signing one more form, and then blank.

Actually, one more moment before blank. I was asked if I had anymore questions. I thought for a moment, as responded. “Um, nope. Have fun!” They laughed at my suggestion/wish, and then I was gone.

{image description:Close-up of a handle on the side of the hospital bed. The label on the handle reads ‘Care Grip’ in white letters on a blue background. Unfocused backdrop of the photo shows my purple backpack atop a hospital table on wheels, and blurry aqua-tinted skyscrapers through the window.}

The initial stages of my recuperation were tremendously painful. There was searing pain throughout my abdomen, inside and out, and I was unable to move my body beyond wiggling my toes and turning my ankles. Though I could move/bend (but not lift) my arms, and I could use my hands to write, to hold utensils, and to press buttons to adjust the electronic bed, these actions were hampered by the multiple needles and tubes piercing my hands and connecting my body to the contraptions holding the drugs and other substances being injected into me, and the monitors announcing my vitals and calculating how many self-injected doses of morphine I’d administered. For most of my day/night/day at the hospital, I was unable to adjust my body. I couldn’t even adjust my pillow.

When I awoke, I remember the sounds of multiple voices around me, but not much of what was said. I was aware of having survived, and of having felt nothing during the process. I hadn’t had any dreams. It didn’t feel like I’d slept or like time had passed. Just like I’d blanked and then come to. The multiple voices turned into bodies, wheeling my bed out of the operating room, through corridors, into an elevator, around another hallway or two, and then into another room, this one much more bare than the operating room. I remember thinking this bed was so much more comfortable than other hospital beds I’d been in, that this bed felt much more sturdy and supportive than the stretchers I’d been wheeled on in the past. Where stretchers felt bumpy, wobbly, and weak as they were pushed and pulled over bumps, stairs, and the ridges of automatic elevator doors, this bed held firm. And it was a new experience to me to be laying in a bed in motion, returning to consciousness rather than losing it.

{image description:Close-up of a part of the IV caddy beside my hospital bed. Thick black plastic, round with four spokes around the metal base of the contraption-on-wheels, and labeled ‘Patient Pal’ in white letters. I thought it was a cute name and turn of phrase, something silly and memorable.}

To my surprise, I was assigned to a private room. I thought it must be either temporary, a mistake, or both. As I realized they were bringing me to where I was meant to be, I momentarily wondered if I had a secret wealthy benefactor or patron, covering a coveted, private respite that I couldn’t pay for on my own. I also wondered if the wards were full because they were covered, and private rooms remained empty because they were not, and if that led to overcrowding, thus moving uninsured patients to rooms they would not see otherwise.

My mom came into the room with me, sitting in a chair in the corner by the window. I’d told her to please join me as soon as possible after surgery, to dig around in my backpack and make sure I had pen and paper at hand the first moment it was permitted. I wanted to capture everything.

Hysterically Yours,

P.S.: If you’d like to know how to support me through my hysterectomy recuperation, please read this.

P.P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!