And I've decided what I want from all of you for my birthday.
A question. In a perfect world one you'd be interested in the answer to, but disinterested ones will also be happily accepted.
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A question. In a perfect world one you'd be interested in the answer to, but disinterested ones will also be happily accepted.
Age: 41 next month
Location: Camberville, MA
Describe yourself in five sentences or less:
1. I am tattooed, short, bespectacled, poly, queer, kinky, occasionally bitchy (and don't believe that's necessarily an insult), fat (ditto), recovering goth, a voracious reader and my politics lean far enough left that they/I occasionally tip over.
2. When asked by a book to think of a two-word description of my personal style "hestia-punk" is what I settled on, though "goth-schoolmarm" was a close second, until I decided I liked to show too much skin to think of myself as schoolmarmish.
3. I have four cats, three of them tortoiseshells, and our household has collectively mourned the dog long enough that getting another one is starting to seem like a good idea.
4. I struggle with anxiety, depression, polyfeels, being a in-recovery alcoholic and premature menopause.
5. I was diagnosed BRCA2 positive years ago, have had a salpingo-oopherectomy and a complete mastectomy and while I struggle with both of those decisions, I am very vocal about having made them and believing people should be informed about this kind of thing.
Top 5 fandoms: I have feelings about being fannish, most of which boil down to can you be considered to have a fandom if you don't interact with anyone in said fandom?
That said, my top five are 1) Teen Wolf 2) any Pacific Rim crossover (I love seeing what people do with the idea of drifting) 3) Max Gladstone's Craft Sequence, 4) any fandom that has an OT3+ (such as White Collar and Leverage) 5) black tea flavored like desserts.
I mostly post about: the aforementioned struggles, my partners, books, food, angst about not knowing how to be social, concerts, things my cats have horked on.
Last three posts: not using my vacation correctly, what I cooked for feast days, and a post that was a writing for my memoir class about my mastectomy.
How often: It comes and it goes, usually in waves. I'm hoping that a variety of factors will combine to make more of the posting and less of the silence. Work in progress, et cetera.
I don’t imagine a lot of visual details. I just don’t. Never have, as far as I can remember. When I can remember dreams, I tend to remember feelings and plots, but not the actual imagery.
But for this phone call, I still imagine the person on the other end of it occasionally. Some poor student, in a beige cubicle somewhere, fidgeting with the spiral cord on a headset, with a list and a script. I knew the call was coming, I was kind of blackly amused. I knew my answer, but I kind of wanted to find out how they were going to ask.
I don’t remember the words. I do remember turning it into a story in my head almost immediately, thinking that I’d get to tell people that I gave my boobs to science. And so when she asked, I said something along the lines of “yes, I’m not going to have any more use for them.”
So many indignities, inflicted in so many different ways, but this at least felt funny.
It’s impossible to actually be prepared for the absurdity of having to cut your own breasts off. It’s a barbaric solution to a potential problem, but it was the only one that felt available to me. The social worker didn’t know what to do with me, the breast surgeon was impressed, but admitted that it wasn’t something she came across very often, the plastic surgeon tried to be kind, but failed.
The ones I have now, nipple-less, nerve-less, covered in oak leaf tattoos? Only the skin covering them is something that I grew, something that came from the factory floor. The rest is a combination of alloderm (a classy brand name for cadaver skin) and silicone. As the first surgeon I consulted explained (I did not end up choosing her in the end) the process is something like making an incision and then scooping out all the tissue with an ice cream scoop. This was the surgeon that moved my necklace aside to take pictures of the originals, as it was an identifying mark, disregarding the fact that the tattoo on my stomach was identifying enough.
I’m BRCA2+. Fortunately or un, Angelina Jolie has the same mutation, and so now I don’t really have to explain the situation or my choice of prophylactic mastectomy anywhere near as much as I used to. BReast CAncer. A mutation that disarmed my body’s ability to fight tumor growth. Easier to explain now that someone famous has made some of the same decisions, but harder too, because her recovery appeared so quick and painless, and mine nearly destroyed me.
Three years prior, I’d gone to my PCP for foot pain, and she called me a couple days later, having reviewed my chart and suggested I go to a genetic counselor and get tested for the BRCA mutation, based on my familial history.
I remember where I was standing when I took her call, in the room we laughingly call the “sitting room” even though there’s nowhere to sit in it, just because we couldn’t figure out what a room that was neither the dining or the living room would be called. We painted it a color called Somerville Red, which turned out to be a dark and dusty pink, as if someone had left a red house out in the sun too long. It’s full of bookcases and a dusty hutch where some random mementos share space with the ashes of my two dead cats and my dead dog, though at this point neither of the cats were dead, and the dog had not even entered into our lives.
I remember what I said, words that I suspect will never ever leave my lips again except when they’re dripping with sarcasm. “What’s the worst that could happen?” And while I’m sure there were worse things that could have happened, the test came back positive for the mutation, skyrocketing my chances of ovarian and breast cancer.
The thing is, nothing actually changed. I was born with this mutation. Nothing I ever did could have changed whether or not I had this mutation. Unlike almost every single other thing in my checkered history, this couldn’t possibly be my fault. I, of course, twisted the narrative almost immediately, and even if the result couldn’t be my fault, it could very much be my fault that I couldn’t handle the answer, and if I couldn’t handle the answer I should have known I couldn’t handle it in advance and not had the test.
After all, never ask a question that you can’t handle all the possible answers to.
In the months and years to come, I’d realize that when I sobbed and asked my husband the terribly unkind question of “can I go home?” (having moved to the Boston area for his job prospects), despite having sold our house, despite all the negative things about Northampton and all the positive things about Somerville, I wasn’t actually asking to go back to a location. I was asking to go back to a time before I knew that this timebomb was in my genes.
Chile and I used to joke about our time-boobs, like time-bombs, but more body specific. Before her, the only experiences I’d had with breast cancer were my aunt and my husband’s aunt, both of whom had died from it. Chile’s mother had survived breast cancer, and when Chile’s BRCA test came back negative we cheered. It was less than six months later when she found a lump and the biopsy came back positive for breast cancer.
Chile went to the same college as I did, we’d known each other since 1996, she graduated a year after I did. We both ended up in New England, we both ended up separately drying out and at some point, got back in touch. And it was her story about driving to Mt Auburn Hospital every morning with the sunrise to her radiation appointments that decided me, it was time to try to get out in front of cancer, in front of this feeling of living from mammogram to MRI to mammogram in six month chunks. And so I made what felt like the only decision that had a chance of freeing me and decided it was time for a complete prophylactic bilateral mastectomy.
I always thought it was called a shotgun apartment, because you could stand in the kitchen and shoot down the hall into the bathroom. Turns out, it’s called a railroad apartment because all the rooms open onto one hallway . The exterior walls were brick and thick, the interior walls thin and we knew a lot more about our neighbors on every side that we ever could have wanted.
We smoked outside the apartment in the stairwell, too lazy or addict-ed to go outside. That’s where most of our serious conversations took place, either there or her car, riding around the streets of Northampton for no particular reason other than we had nothing else to do.
We had plans, boston marriage plans, we were going to buy a house in Northampton, renovate one side and rent the other, then switch and renovate the other side, then sell the house and do it again. I think we believed that we weren’t going to find romantic partners, or that romantic partners could never be as close as we were.
In college, I’d stage managed a couple plays she directed, we kissed once and had a class called Queer Media together. We weren’t close, or at least I didn’t think we were, but weeks after college she called me and announced we couldn’t live with our parents anymore. She flew to New Hampshire, borrowed my car, an Olds I’d bought for a grand from a little old lady’s front yard and promptly named Dolores, and drove around New England.
My little brother was sick, his Crohn’s finally diagnosed and proving unresponsive to medication, I couldn’t stay in my parents house any longer, but I didn’t want to be too far away. So she returned and announced we’d be moving to Northampton, the perfect amount of time away, as good a place as any. So we did. She went back to Vegas, packed up her life and drove across the country, I packed up my car and drove an hour and a half south, to set up camp, to set up the utilities, to wait for her.
The aforementioned railroad apartment was our second. Our first had been charming, but our rent had been raised, our heat remained erratic, and one of our neighbors had tattled about our cats. We’d managed to keep our landlord from discovering they existed, but we knew it was only a matter of time. Oh, and the back porch balcony had fallen half-off in a storm, and there was a piece of machinery in the basement you had to kick to turn the heat back on, and any number of other small problems you have in the first apartment in your twenties.
However, this apartment made no pretenses of not being a shitshow. The kitchen existed in that timeless yellowing linoleum palette, some of the windows didn’t open and the ones that did didn’t have screens, and the elevator almost never worked. We got familiar with Northampton’s finest, as they responded to domestics next door. Once, Red's bedroom rained from the upstairs neighbors’ illegally installed dishwasher.
I don’t remember much of what it looked like, only little details and moments. When we had a Charlie Brown christmas tree that we decorated by buying a Weekly World news magazine and cutting out pictures of Batboy. When I had to drive my car through side-view mirror-deep water, getting water in all sorts of parts that weren’t supposed to be damp, and I chained something like five extension cords together to run outside to the parking lot so I could use a hairdryer to coax her back to life. When we tried to make something called Guadalupe Pie and it turned out so unfortunate that we named it Guantanamo Pie.
We were better off this year: lower rent and a slightly better class of temp jobs. No more ketchup and rice soup, no more hiding out at Barnes and Noble for heat, fewer dented cans, fewer decisions about cat food versus student loans. We had fun, bringing home boys and girls from goth clubs, watching new Buffy episodes each week at our laundromat. Red had a job at a bakery for a while, and she’d bring home all the burnt or misdecorated cakes and pastries and so we once ate rum cake for breakfast for almost an entire month.
Everything fell apart in this apartment. Everything fell apart on the back stairs outside the apartment, smoking Camel Lights and talking about the nature of disappointment. Everything fell apart when I asked her if she could go with me to the appointment and she said no. Everything fell apart when I ended up curled in the corner of the kitchen where the counter met the wall, cramping like crazy from the morning-after pill. Everything fell apart, over and over again for the next year, as we tried fifteen ways to salvage our friendship, as her boyfriend and I got drunk and hooked up on my birthday that year. Everything fell apart as I carefully positioned myself as the fun-loving, low-key, heavy-drinking one, more than half in love with her boyfriend (who also happened to be our boss), as I stopped wearing glitter so she wouldn’t know anyone else was touching her boyfriend.
They’re married now. I’ve Facebook stalked him a couple times. Once I ended up with a random dick pic on that sort of website (I couldn’t actually recognize it as his or not). Once I ended up with the birth announcement of their first baby.
The truth isn’t just one thing. All those police procedurals tell us that eyewitnesses are unreliable and so here I am, unreliable eyewitness to all the things that keep happening. I impose narrative structures on unrelated things, wanting to make sense of each event and even moments later, I can’t tell what actually happened, if there is such a thing, and what is only the parts that reinforce whatever framework I’m pretending my life has.
Lesson was my first love. We were teenagers, he was dating someone else, we almost never touched. But we hung out in bookstores, reading each other poetry, telling everyone we were someplace else, with someone else even before I was shunned. We swapped Tori Amos bootlegs and Sandman comics, watched Kurosawa movies together. We wore flannels, played Magic the Gathering, did our Latin homework together, laid on the trampoline in his backyard and talked, staring up at the sky, close enough that I could feel him in the tiny hairs of my arm, even if we didn’t touch. We talked every night on the phone, he’d click over to the other line to tell me his girlfriend had called, and some nights, he’d hang up on me, and some nights he’d hang up on her.
We ended up kissing in a parked and running car in the post-Christmas days of December, two years later, and I remember being worried that he’d be able to taste the crazy on me, convinced that it would taste like aluminum foil. Or blood.
But high school happened. His best friend’s mother, my English teacher, decided that I was anathema and that none of them should speak to me again. She told me “sometimes when we need love the most, we deserve it the least” and sounded like she was doing me a favor. I believed her, and it made perfect sense that the entire group - Lesson, Lesson’s girlfriend, the aforementioned best friend, his girlfriend and an assorted cast of characters - would stop talking to me on her say-so.
Lesson saw me in secret, occasionally telling the others he was using me for my Latin homework, or that he had to babysit his little sister. We didn’t go out in public anymore, he couldn’t be seen with me, the closest we’d get was meeting behind the Taco Bell, where I’d sit on a pile of torn-up concrete slabs smoking, and he’d pace and tell me how hard this was for him. My only moment of something like pride had me wearing too much vanilla oil and rubbing my wrists all over the upholstery of his car, a tiny olfactory claim.
When I write about him in my journals, I call him Lesson. He told me that I should never learn the lesson that his actions were teaching me, the melodramatic self-aggrandizing asshole. But he also gave me my favorite backhanded compliment, telling me that I was patient like a crocodile, lying in wait for him to fuck up, even if nothing ever changed when he did. I loved that image, predatory patience. I still do.
We spent the next eight or so years drifting in and out of each others’ lives, doing different kinds of damage every time. Eventually, we lost touch. I used to tell myself that time brings everyone who isn’t an asshole back around, trying to absolve myself. Some nights, I still miss him. Some nights, I still believe he was right, I’m not worth keeping. But on some nights I remember - fuck that noise.