Had this kind of “medical” treatment been around when I was a little girl, I would have been sunk. Any one else? Does this child remind you of yourself when you were her age?
“I just gave him the language”: Top gender doc uses pop tart analogy to persuade 8-year-old girl she’s really a boy
Hello, Beautiful People,
April 13, 2017 — obviously I’m not ready for 2017–we’re 4 months in already, and i’ve been fiddling with this here post since January! I’m gonna just post it now already. I started this in January, then returned to it and tried to keep updating the references to dates and stuff. but now i’m just posting it, and i’ll make a new post some time in the future. so much has happened! okay. Here ya go:
I don’t remember what my last post was about, probably some update or other about the stowaway in my head. It’s been a long time, anyway — and now it’s March! Of course a lot has happened in those intervening weeks, including another MRI. That was February 25th. It showed that the tumour is behaving, as the chemo doc hoped, “in an indolent manner”. there is no change at all from November. So that’s excellent news. I knew it would be like that. After the initial freak out, and spending WAY too much time consulting Doctor Google, I figured i’d just carry on, and treat the stowaway the way I’d treat ANY guy taking up occupancy in women’s space — with derision and mockery — and finally shunning.
For a while after the biopsy, I thought I’d NEVER get back my energy and speed (i’m none too fast-moving at the best of times, mind you). I was in bed most nights by 9:30 or 10 — a great idea, by the way, which I recommend. Now i’m back to my evil ways, watching netflix or playing solitaire or listening to podcasts until late. But I can’t wake up as early as I used to, no matter what, anymore. One of my young friends from the Danish summer school I attended in 2010 used to call me a “F***king Hurricane!” which I found quite flattering. These days, I’ve been downgraded from hurricane to tropical storm, I think.
Before this bloody cold tackled a couple weeks ago, though, I was working out in the gym at least 3 or four days a week again. Ending and beginning the year where I wanted to be. going for reps. Endurance, not bulk now. i’ll have to face it, i’m past competing anymore. Even before the thing in my head, i had all these nagging injuries that I was trying to ignore. Can’t. I’ve played my accordion a bit so far. Not enough, but some every week.
And the gifts keep coming my way, you know? Did I tell you about the sock monkey my cousin in Perdue Saskatchewan made and sent me?
Note the bow tie. Her name is Patrice Mireille. I don’t know why she looks so French, but she seemed to fit that name. Bev usually makes these with scarves, not bow ties, but now there’s a thing with me and bow ties, so she went with it. And then in early February, my friend Vickie and her sister Bev came to visit, along with Lilly, Bev’s delightful granddaughter. And Vickie and Bev made me the most wonderful (and warm!) quilt ever:
Note that each square contains four bowties — one in each corner:
Such gorgeous, detailed, exacting work — so much love went into that quilt! Plus they made a pillow case and a carry bag in the same way. The backing of the quilt is all left overs of flannel pyjamas that Vickie makes for her family every Christmas. It’s been a very very cold and endless winter here in Vangroovy, and that quilt is delightfully warm and comforting in more ways than one.
PLUS we had a fun day. We went to the aquarium and saw dolphins and sea lions frolic in the snow, we watched the jellies undulate and glow for what seemed like hours, we looked for tiny frogs in big terrarium-ish things, and we got lost in the (big, bright, very tacky) gift store. I wanted more of them, my dear friends. But I loved our time together. We just know each other, you know? Bev was a little kid when Vickie and I were hanging out the most, she’s nearly six years younger than Vick. She said to me once, when I first met her again in the spring of 2015 when Vickie and Glen brought me and Mom’s stuff home to Vancouver, “I don’t remember much about my childhood, but I do remember the feeling when you came over — your voice with all the laughter in it –“. She said I took some weight from her life then, and brought fun. I didn’t know until that 2015 meeting. you never do know, do you? the kind of effects you have on people — you never know.
There’s been a lot of other stuff in the last few months — My friend Shannon’s mom died January 21st. Do you remember my post from a few years ago about Shannon? Of course not, it was years ago — who can remember stuff about someone else’s blog for such a long time? here’s a link for ya: https://easilyriled.wordpress.com/2012/01/11/releasing-shannon-to-the-river/
Joan never really got traction again after Shannon died. How could she? and Shannon’s daughter is still having a hard time, too. you know what, I don’t want to write about them yet. It’s too painful. I tell you what, the worst sort of sexism, reinforced by male violence and alcohol, swept through generations of that family and laid waste to good people. Racism, too, of course. Joan’s side of the family were Anishnabe, I think — as well as Irish and Scots — worlds of suffering — some of ’em forced out of their homelands, the rest of ’em divested from, then enslaved in their own territories. When I last saw Joan, I told her that I’d see her the next day, but she didn’t have to wait around for me to show up. She looked at me through her opiate fog, her brown eyes sharp and focused, raised her right hand and waved at me. She was relentlessly hopeful — always minimized the pain she was in, sometimes would hint that she needed help, or that she was pissed off or sad — then she’d skitter away. Her life didn’t turn out the way she wanted — whose does?–and maybe she was too ashamed to tell anyone, or maybe she was so angry about it she was afraid she’d explode if she nudged that hot ball of rage deep inside her. I don’t know. She was all heart, was Joan. All heart, love, courage, fear and rage — I couldn’t help. In some ways, I abandoned her and her granddaughter, Shannon’s daughter. I miss Shannon still. She was such a bright spark — really smart, tough, sensitive, funny — she LOVED life. she just couldn’t manage it. The depressions became absolutely crushing — she didn’t think there was any way out. dammit.
April 13 again — I will post this now, as I said. Next post i’ll write about my experience on the UBC sexual assault policy steering committee — which was both really interesting and educational — fun, even–AND frustrating and discouraging. Life is good. I miss Shannon, I think of Joan often, I see Shannon’s daughter sometimes still, she’s like her mom — really smart and sensitive and good. Troubled, of course….
Anyway, lots of people have been asking, “how’s your health, Erin?” It’s good. I’m a lucky woman. that’s for sure. now i have to take the dog out…
Which is another story.
Hello, Beautiful People!
Well. What a great day December 3rd was. Good, anyway. I was played right out, though, I tell you what. I went to the Montreal Massacre Memorial event that Rape Relief puts on every year. This year it was at the Native Education Centre, not the central branch of the library, because there was a flood in the library a couple of months ago and they’ve still not finished cleaning that up.
It was a good space to have it, the NEC. Much smaller than the library, which was kind of good too, because it felt like it was really well-attended. Anyway it WAS well-attended. Women came from all over the place, and all over the politics. Some men, too. Allies, real ones, not the sensitive guytm kind. Though I’m sure there were some of those there for a bit. The roundtable discussions and lectures and conversations hit all the points – Law, activism, social services, education, –the day confirmed that we are living in pretty bleak times, the backlash is strong, women-only spaces are increasingly necessary and increasingly rare, heterosexuality is more forcefully coerced, perhaps more than anywhere else in the queer “community” with that impossible-to-pronounce-homogenizing acronym “Lgbttiqqetc”. I sound flippant every time I talk about the conservatism and misogyny of the trans trend that is promoted by every institution of power, but it is a serious threat to women’s liberation and possibly more effective than Lepine’s 1989 women-hating murderous rampage. Sorry, that was a long sentence, and now I’m going to move on without going into a longer explanation right now of what I mean by all that.
It wasn’t all gloom and doom, thought, not at all! We also celebrated women’s resilience and the powers we share with each other in the pursuit of liberation. It was one of the best memorials I’ve been to. Women get it. Why we have to remember, and what the connections are between the massacre and the challenges the women’s liberation movement faces today. Men don’t. Most men. Not because they’re stupid, but because they don’t want to give up their power and the space and stuff they have (at our expense). They’re willing to settle for the loss of their humanity in exchange for such power and access. We’re not. Not for them, and certainly not for us.
Anyway, now on to recent updates about the stowaway-
On Wednesday November 30, i went for my first appointment to the BC Cancer Agency, and December 8th to my second. Both times I went with Trish and Su. They took notes and asked good questions. The first time we met Esther, a nurse, Dr. Nichol, the radiation oncologist and Tracy, a counselor. Dr Nichol looks for all the world like an elf! he’s not as short as elves are portrayed, and wasn’t wearing pointy shoes, but otherwise, he looked for A LOT like one of Santa’s helpers. His ears are kind of pointy, and he has a narrow chin beard and a Vandyke moustache. Very cute. But I didn’t mention that to him. He said that as of now, there is no way to safely remove the tumour, and that it would, at some point, grow. Eventually I will have to have radiation and chemotherapy. He described some of the “side effects” (I don’t like that term. There are effects you want, and effects you don’t want—) of radiation. They sound very unpleasant. They didn’t have the genetic results of the biopsy yet, so were not 100% sure of its characteristics, but once that comes in they will be able to recommend what treatment and when. As of December 8th, they did have genetic results, and the doctor we saw then, Dr. Theissen, said that it confirmed I had a gazillion-syllable thing in my head. The name of the genetic result is about 20 times bigger than the tumour itself. Both doctors said they would opt to monitor the little critter by running my head through an MRI every few months, and when it starts to grow, then they’ll bring out the radiation and chemo. And he said, there are a whole bunch of studies going on, so it is possible they will have new treatments available in time that will be more effective and not as destructive all around as radiation and chemo. He couldn’t give me a prognosis, but did say that often people live for years with these things. Dr. Theissen was more precise, he said that often people can live for 15-20 years with these things, and usually die of other things before the tumour gets ‘em. Also, I am not allowed to drive for six months. I thought that meant May 21st at 4 pm. But good news! They don’t count the little seizure I had after the biopsy surgery, only the big terrifying one November 3rd. So that means I can drive starting May 3rd at about 2 pm. That was when I woke up from the first seizure, about 2 pm.
Also, this is bad news, Dr. Thiessen said I could never lift heavy again. Ever. In case I strained (called a Valsalva maneuver), thereby increasing intra cranial pressure and possibly triggering a seizure. Never mind that I’m pretty sure my back is past the heavy squat capabilities, I was planning to compete in 2017. Dammit. No fewer than 15 reps, he said. That’s really sad. I started to cry. Su said, “that’s okay, you can just work out lighter but with more frequency”. I KNOW, but I want to bulk up! I’m looking for the prized no-neck look, fer cryin’ out loud. I’ll just have to work up to 15 reps of 300 lb squats. That may take a little while. 275 was my best 1 rep max, and that was probably 20 years ago. Sigh.
No one knows what caused it, or how long it’s been there. My auntie believes that the accordion did have something to do with it. Also my unwillingness (inability?) to follow Mom’s orders and tidy my room – “even once, Erin, for pete’s sake!” —
In the meantime, once i recover from the biopsy surgery, I can return to work. so that’ll be January 1st. I feel quite well, except for this awful cold I have, and I still play out earlier in the day than I did before. I guess that’s to be expected when you’ve had brain surgery. The first appointment was pretty overwhelming, the second less so. But both had lots of information, not all of it the news i’d like to receive, but overall, it’s as I expected, except for the part of having this unwelcome squatter in my head forever, and never being able to lift heavy, or hike, swim or even fucking bathe alone. Because of the seizure risk thing. Oh! Dr. Theissen prescribed a better anti-seizure drug than Dilantin. That’s good. Dilantin is terrible – is contraindicated for all kinds of drugs, vitamins and supplements. Also can cause facial hair growth (which I don’t think I’d mind, especially now, it’s so cold here…). Then I would run the risk of being ‘misgendered’ though, more than I am currently, and referred to as a ‘transman’ or ze or they. Of course, I don’t know what pronouns people use when referring to me, as usually you don’t refer to anyone who is with you in the third person. That’s generally rude. I hope they use “That hilarious feminist” as my pronoun.
Anyway, good news is the grumpy stowaway is small and looks like it’s not going to grow anytime soon. Bad news is it’s not likely to leave anytime soon, either. Good news is, LOTS of material for comedy and stories. Bad news is, conductor for seizures so no more heavy lifting. But mostly the good news is that I know how much people love me, and that my contributions so far have mattered to my allies, comrades, fellow travelers. And your contributions to the glorious struggle, to the world banks of love and funny, to our shared and longed-for freedom – are essential. Doesn’t matter if we win (but we will), it matters that we do our best, feel the love, keep the faith and never give up.
That all sounds too schmaltzy and sentimental. Sorry. Oh! One more story – I’ll think of more, I’m sure. During the first cancer agency visit (I don’t have cancer, by the way, that’s another good thing), in between the doctor and the nurse or the nurses and the counselor, Trish, Su and I were tossing around ideas of career options for me, or at least how to generate an income because I gave up a couple of things when I didn’t know whether I’d have treatment or anything. I’ve always wanted to be a minister, or preacher. But I don’t believe in god, so that lets out most Christian denominations. Trish suggested to found a new religion called the Church of the Latter Day Rascals, and I said, “We’ll pray to Grumpy Old Dykes”, and Su said, “God”. I can’t believe I hadn’t thought of grumpy old dykes as an acronym for god before! So now, at my twelve-step meetings, I don’t even mind saying “GOD” because I know what it stands for now. What a relief. You can use it too, if you like. Or, Grumpy Odd Dykes. Just as good.
I nearly forgot — how could I? The weekend between the first hospital stay and the biopsy hospital stay, my storytelling friends gathered to tell the 1001 Arabian Nights stories. Every year we gather to tell a different epic. It’s so fun– everyone takes a different story or two, analyzes, interprets and learns it, and over the weekend we weave to each others’ parts. I hoped to tell this year, but decided not to because I had so much work to do, more teaching than ever before all at once. Turns out, that was a good idea on account of the seizure and the tumour and all, anyway.
The storytellers, I hooked up with them in the early 2000s, and they taught me that “you can’t know someone’s story and not love them”. That phrase has brought a light to many a tangled, gloomy, fractious relationship. Don’t have to like them, but you can love them.
So, Kira and Patricia read my blog, and they told a few of the other tellers at the epic. They circulated a card, and bought a beautiful bouquet, with a wee cabbage in it, some red berries, purple lilies, some kind of fine fern–beautiful. And a card with everyone’s signature, and words of encouragement. Tell stories, keep the histories alive, remember, imagine —
Philomena gave them to me, and we had a good visit the Friday before i went into the hospital. They have all added to the magic all around me. where would we be without stories?
If the tumour doesn’t go away, i’m going to turn it into a vault for super powers. I’ll start with cribbage and go from there.
November 30–I got my head staples out today. My doctor gave them to me, i think i’ll make a little art collage that will incorporate them. Some people might find that repulsive. but there’s no blood or hair on them, I think. So unless you knew they were keeping my head together, you wouldn’t know. My friend came with me, and rolled her eyes when my doctor and I talked about what kind of workouts I could do. “Kettle bell swings?” I said, “with light ones?”
“What’s that?” she asked, and my doctor told her it was exercise equipment. My friend rolled her eyes. She said something amusing then, but I can’t remember what it was — when you read this and remember, will you let me know?
I told my doctor that this tumour was giving me lots of material for stand up. As we left, she said, “Don’t be a stranger” and then muttered, “No stranger than usual, anyway. Hey! maybe there’s a future for me in stand up”.
Yesterday, I picked up about 50 pounds of frozen meals that some of my students prepared for me. They spent a day cooking, and my friend Trish picked it up and gave it to me. You’re all invited over for dinner! make it fast, because i’ve moved back into my house now, and i’m kind of like a geological event… Mind you, I’m determined to take better care of myself and let myself live in a home that can be a place of hospitality.
but still, better to not wait too long to come over.
first appointment with the cancer agency this afternoon, I’ll let you know how it goes.
Hello, Beautiful People,
well. I’m out of the hospital now. I have a little white gauze patch on my head, perched near the back, slightly to the left covering some staples–it looks like a wee, rakish yarmulke. My head doesn’t ache as much or often anymore, and it doesn’t feel so much like I have a spike in my head. When i cough, it still feels like my head is cracking open a bit, but not as much as yesterday. Or even as much as this morning.
Last week, on Wednesday, one of the men in my morning class gave me a card when he walked in. I started to cry, and thought, “oh no, here we go…” I didn’t think I would get a word out all day for sobbing. but I did. I thanked him and turned away, took a few deep breaths and turned again. Another man came to school wearing a little red bow tie on his t-shirt. ” That’s cute, Mike, did you dress up in honour of the occasion?” I asked him. he said, “Kind of”. He’s one of the quiet ones, sits at a table in the back, watches everything. “nice” I said.
Then I noticed that everyone was wearing bow ties, in all colours. Mike offered me one, and i pinned it on my shirt. I don’t remember now, but I think I wept openly then, how could one not? He made one for everyone in the class. all different colours. I started our class the way i usually do, with a moment of breath. I think we all needed it a bit more that day than usual. I said I was very moved. I cried a little, and said I would just keep talking through my tears and eventually I would even out. I did. We went through a powerpoint presentation that a friend had presented to my Monday evening class a few weeks before. She works in the day, so couldn’t do it for my daytime classes. we had a really interesting discussion about First Nations Learning Principles, and the contradictions and parallels they noticed in their practicum placements over the last two weeks. At the end of class, we kind of lingered because we didn’t want to go, but eventually we had to because another class was coming in to the room. some students came with gifts and cards, many lined up to hug me, “you got this” and “thank you” they said, and I said to them, “thank you. thank you. thank you.” I have never felt so grateful, I think, or so proud, or so frightened but brave all at the same time.
When I went to another building to teach my afternoon class, they all had Mike’s bow ties on too! It looked like the whole building was awash with colourful bow ties. I couldn’t stop smiling, and I couldn’t stop crying. Again, the end of class came and the next class came in–many of my morning students were in Christine’s afternoon class, and again, they lined up to hug me and give me cards and gifts and cry and thank me, and some looked so stricken. I hugged them tight, and said to them, too, “thank you. thank you. thank you.” and “i’m going to be just fine. I’m going to be okay”.
My friend Nora came to get me. I’m not allowed to drive for a while. Cause of the seizure. three other faculty members are taking my classes. I know they won’t love them as much as I do — they’ll only have them for four weeks, that’s barely enough time to learn anyone’s names! I sent all of my colleagues the letters that I sent to my classes, their stories woven together. I might get in some trouble, I’m obviously critical of the trans trend — exactly opposite of the direction my department is taking. But there ya go. It’s going to come sooner or later. And I don’t require my students to agree with me (though I hope they will, I know it’s a very big departure from the current propaganda). I want them to hear and consider a feminist view — enough have told me they don’t hear this from any of their other instructors, and they find my views interesting/relieving/sensible — that it gives me courage.
November 27th, 2016– the last week has been a total blur. It feels like things have settled to a steady pace, I’ve decided the thing in my brain isn’t a hitchhiker after all, who would stop to pick up a glowering, short-armed creature by the side of the road? No, it’s a stowaway. I haven’t named it, and I won’t fight it, I don’t want to get intimate with it and I don’t want to give it any more energy than I have to. But I’ll take it as far as it’s going, and drop it off at its destination when it’s time. I’ll tell you what i remember about the surgery and the hospital stay, and give details about the biopsy results–not necessarily in that order.
First, the biopsy results: It’s a Grade 2 Oligodendroglioma. My friend Stephanie said, “Trust you to have a thing that’s seventeen letters long!” Apparently this kinda thing is pretty rare, and mainly alights somewhere in the frontal lobes. Where the language and memory and personality machinery grinds and clanks away. Mine’s in the left parietal lobe. That’s where the right side of my body is run from — the motor skills–walking, lifting, dancing. But that won’t stop me from blaming any of my inappropriate behaviour, lapses in judgement or gaps in memory on my brain tumour. I’m gonna get as much mileage out of this as I can. “Oligo” means short, or small, “dendro” means tree, or branches, and “glioma” is brain. And according to Dr. Google (I saved you the trouble), only 4% of all primary brain tumours are these little critters. Usually in the frontal lobe, and most of them stow away in men’s brains. Maybe I do have a male brain in a female body! Anyway, it’s not cancerous, though it’s a grade two, which means very slow growing, and could become cancerous. So I’ll get a referral to a neuro-oncologist, who will figure out what kind of chemo to use to shrink it. I’ll have to ask him if he thinks he can make it get outta there.
Trish came with me to the pre-op preparation. I wasn’t allowed to eat or drink anything after midnight the night before, except 8 oz. of clear juice an hour before check in time. my surgery was scheduled for noon and was expected to take 2 hours. then a couple of hours in recovery, then up to the neuro icu ward. I had to shower on Sunday night with this bleach-ish stuff, then in the morning again, and when i got to the pre-op room, wipe down with warm, thick baby-wipes. I met a whole bunch of nurses, two anesthesiologists, a man with a Scottish accent and an Irish name, and a woman who looked like she might be a lesbian. Mind you, everyone could look like a lesbian in those blue smocks and poofy paper hats. Dr Zwimfer came, and so did another neurosurgeon named Dr. Ajmal Zemmar. I got “The Z team”. I asked Dr. Zwimfer if he played squash. He laughed a bit and said “25 years ago, but not for a long time” — “good enough” I said. Then I got an iv, and finally they came to take me. Su came from work, and both she and Trish were there when the porters and nurses came to take me away. They gave me blankets “it’s cold in the OR” they told me.
“Am I supposed to be dizzy?” I asked. someone answered yes, that’s exactly what’s supposed to happen. in the OR, which was very very bright and very very cold, they helped me slide on to a warmed pad of gel (which felt a lot less disgusting than you would expect). I was crying, and they kept saying, “You’re in good hands”. I replied, I know, yes, I know…and then someone put a mask over my face and I said, “thank you”. that’s the last I remember.
I had very vivid dreams that I can’t for the life of me recall — only that i was in a broad plain that was as bright as the OR and there were pockets of people around. I don’t remember what, or if, I talked to them or interacted. Ajay’s face was the first person’s I saw as I woke. I cried as I woke up, he said, “you’re waking up, it’s okay to be emotional, that’s normal”. Again I said thank you. I had a short seizure as I woke up, it felt like the first one, but it wasn’t nearly as long, or as horrifying. I didn’t lose consciousness, or bite my tongue. That was good. No one around seemed as concerned about it as I was. I couldn’t reach the call bell, or say “help”, all I could do was say, “ahhhhhh”, like the first time. But then it was over.
I asked them to call Trish to give her a message. I think the nurse’s name was Robyn. or maybe Rachael. she called Trish and gave the phone to me. She was happy to hear me and I asked her to call my ex-lover* and Rape Relief to give a message that I was okay.
The lowest paid workers in the hospital can hold up every part of treatment. when my room was ready, I still couldn’t go because there weren’t enough porters. I told them that I have a friend who was a porter there, I’m sure she’d come out of retirement for me–they didn’t think that was very funny. I finally got up to the room, and Trish was parking her car again, Su was waiting for me, her daughter came in and so did my friend Kim. Su kept staring into my eyes and saying, “look at that! she’s not even pinned!” meaning my pupils were regular size not shrinking into disappearance because of the opiates. They all talked about me in the third person a little bit. “she’s so alert and perky” and then, “you’re so alert and perky!”
I was STARVING — well, clearly not, but i’d been 20 hours with no food, 30 or so hours with no coffee (too late for that at 8 pm). I was some grumpy, I tell you. And Trish had taken my phone, too. I’d given it to her, I was shocked by how hamstrung i felt. Never mind that i was tied to an IV running antibiotics and painkiller into me, and these weird compression sleeves on my legs. kinda like a massage actually, and felt nice, but it was a long time until I could move with any confidence. Well, “long time” is relative. Also, it felt like there was an iron spike in my head, and every time I coughed, I could feel my head coming apart. I got Dilaudid the first day, which was quite pleasant, and that interfered with the pain very effectively.
Tuesday was my birthday. All day long, I got as much mileage as I could out of that. Everyone who came to see me, the doctors, the physiotherapists, the nurses, had to run through a neurological exam with me, “hold your hands out, palms up, close your eyes, push my hand, do you know where you are? what’s your birthdate?”
“Today!” I would gleefully holler.
“oh!” they would be surprised, having not put together the date on my chart with the date on the calendar. “Too bad you have to spend it in the hospital”, they would say.
“I like hospitals” I answered. Every time. Then they would wonder if the seizure or the tumour had dislodged something they’d missed before. “I know people think that’s weird”, I said once, to the CT Scan guy.
“It IS weird” he said.
In the morning, my nurse, Rita, and another nurse (Pam? Maybe it was Pam) sang “Happy Birthday” to me. Every meal came with the list of what was under the lid, and at the bottom, Happy Birthday!! with a little high-lighter happy face. Su came with a beautiful cheese cake and a birthday gift from her (adult) son, Will. A Russian powerlifting device meant to develop grip strength. Her daughter, Iris, gave me a book of Sudoku puzzles. so I spent the day improving my finger and jaw strength (the Sudoku made me grind my teeth). Shauna, who has guided me in one way or another from applying for grad school to finishing my PhD and beyond, and is taking over my Monday evening class — came to visit with a package of cards from everyone in that class. They were beautiful! they’d spent some time the evening before making these cards. I waited until she was gone to look at them and laughed and cried and showed Rita and anyone else who happened into my room.
oh yea, the ct scan. So, every day there’s quiet time between 6 and 8 am, and between 6 and 8 pm. No visitors. But then from 8-10, people can come visit. So on Tuesday, my birthday (did I mention that?), I had some visitors during the day, and was looking very forward to evening, when my friends who worked during the day might come. I had some cheesecake leftover from the morning. I swiped some of those babywipes under my arms so i’d at least smell fresh, and tried to tamp down my hair a bit. I wasn’t allowed to shower or shampoo yet. Didn’t want the staples to rust.
Right at 8 on the dot, porters came to take me for a CT scan. Dammit! They told me it would only take about twenty minutes. The doctor, earlier, had said I’d go for a CT scan sometime in the afternoon, then I’d be moved to a regular ward. But when I’d not heard anything, I figured all that had been moved to the next day. when we got to the ct and radiology place, there was a log jam of beds and gurneys, and I was at the end of the line. The porters expressed surprise. “Wow, it was so quiet in here just a minute ago!”
Tick tick tick. Everyone else was whisked in, out, then away. In, out, away. In, out, away… Finally it was my turn. In, neuro exam, “spell your name”–E-R-I-N– “What’s your birthdate” — Today!– “oh, that’s a drag. to be in hospital on our birthday” — It’s okay, I like hospitals — “that’s weird”. CT scan, out.
“hello, can I go now? I could walk…”
I was getting a bit pissy. I’d been gone an hour already–more than an hour. My visitors would be gone. dammit.
“We’re trying to find someone to take you”
“I have a friend who was a porter here,” I tried that one again, not expecting they’d go for it this time, either, “i’m sure she’d come out of retirement for me”. She would, too. But the work messed up her back, so it wouldn’t be good for her. Never mind, I would be happy to trade pyjamas with her, and push her up to the ward. The people around didn’t take too well to that suggestion, they talked about insurance and liability. “I was kind of joking”, I said. I was getting a bit cranky and irascible. I reminded myself, this is Canada, I would have to sell my home to pay for this if I lived in the US, they’re doing the best they can, it’s not their fault, it’s the fucking government spending taxes to suck up to big business and pipelines and privatizing education and whatever else. I am grateful, I am grateful, I am grateful…
But it’s my birthday and i’m all alone on this hospital bed and I feel fine, fer cryin’ out loud, except for a little headache, and I haven’t worked out for four days and I’m a bit squishy now, and my people are upstairs, maybe they’ve gone home already…breathe, Erin, breathe. No need to get all self-pitying and whiny. You’re in Canada, what would this kind of health care cost if you were in the US? A fortune, that’s what. those few cells they drilled into your head to get would cost more than a small painting by some famous guy. Not as much, maybe as a small painting by a woman, but still. I’d rather have the art on my wall than a little glowering stowaway in my brain…but I wouldn’t sell my house for it. and I don’t have to sell my house for this, either.
I roamed around like this in my head for a bit, interrupting my own musings every few minutes to ask someone else who passed by if they could get me up to my room. Everyone was sympathetic. It was 9:30 before i got back. the porter who took me was a lovely woman named Alison, or maybe Allison. Or Alyson. Anyway, she was short, Black, and really nice. “How ya doin?” she asked. “I’m fine,” I said, “But a bit grumpy”. She warned me every time there was a bump. I would’ve liked to take them at some speed, maybe catch some air — but then again, my head was still a bit achey, still felt like it was coming apart at the seams when I coughed or laughed too hard. She told me I wasn’t nearly as grumpy as some people. Some people (mostly men-people, by her stories) would swear at her, at the porters, and insult them, and tell them they were worthless. She said she didn’t ever warn those guys about bumps. That kind of treatment can sure wear you down. Still, she was so cheerful with me, and kind. She called me “hon”and positioned my bed just so when we arrived at my room.
Bronwyn had been, but couldn’t wait for the hour and a half I was gone. She brought a card and a 2017 Canadian Farmer’s Almanac. I haven’t read one of those for AGES. I forgot how fun they are. Su and Will had waited for me that whole time. I have so many gifts, I tell you. Su brought daffodil bulbs and we’ll plant them on my balcony. All day long, I got nothing but goodness from everyone around me.
I told everyone to “keep an open mind, but have a good fastener available or stuff will fall out”. Yesterday I looked at my staples. Louise was visiting, and we took pictures. the incision is pretty long, and very nicely aligned, at that. That’s good to not have a crooked skull. That would be weird. They didn’t shave any hair either.
Okay, lookit, I could say more, tell more little stories about my generous friends — OH! one more — the day of my biopsy, Stephanie, Erika and Joey made a go at my apartment. I think i’ve said on this blog before that I got my dad’s housekeeping gene. which is to say, it’s recessive at best. Holy untidy, Batman! I sweartogod sometimes, if I could, I’d evict me. sigh…
Anyway, I don’t know where they put everything, but they tidied and cleaned and put away and tossed stuff that was stale-dated and cleaned my refrigerator and I think they even cleaned my windows! it looks amazing in here. I have such good friends.
I’ll just end with this–you know, for a long time, even since i stopped drinking, I would say, “I squandered my potential”. Even though I would say to other people, “your contribution matters, you are essential”, and kind of believed it of myself, but not quite. but then, when my little stowaway kicked me in the head, I tell you what, people have risen up and stood beside me so close, there is no way I will fall. My beautiful brother, my family in Saskatchewan, Alberta, Ontario, Cornwall and Wales, are calling and offering and weaving the love together with my family here in Vancouver. My students told me I am inspiring, that they haven’t ever had a prof like me — and they told me what i’ve done that sparked them up, too, so I know what to keep doing. My feminist comrades gathered round and sent flowers and called. I know their love for and expectations of me remain great. The fellowship, my sober comrades, too — “you can fake caring, but you can’t fake showing up” said one of my friends–and there’s been no fakery from any quarter.
I know that all of this is exactly because I am reaching my potential. I have responsibilities, and I know i’m meeting them because my fellow travellers, my family, my colleagues are showing up for me, now. I decided at the beginning of this term that I would be up front about my feminism, my lesbianism, the harms of the trans trend here, the comfort and relative ease of sobriety–without preaching to or insulting others–and it seems i’ve found, or am finding — a way to do that. I am taking myself more seriously since the summer, and now this new adventure has shown me grace and gratitude. And you have too.
I can’t tell you how, well, awed I am. You already know how odd I am.
Keep the faith and feel the love, Beautiful People.
*There is nothing like a potentially life-threatening condition to melt resentment away. I am very grateful for that, too.
Hello, Beautiful People
The neurosurgeon said last week that my tumour is in “an eloquent area” of my brain. I like the sound of that. It means that there’s lots of stuff going on there. Here’s what the November 7 MRI said:
There is a focal cortical expansion and high FLAIR signal involving the left parietal lobe extending through the pre and post central gyrus. This extends over an area measuring approximately 3.5x 3.0 cm. There is minimal faint intrinsic T1 signal distributed throughout this area without associated enhancement. this extends along the posterior aspect […]
dammit. I started this six days ago. Now it’s November 20, the eve of my biopsy, and i can’t find the mri results. Not that i know what they mean exactly, but the neurosurgeon, Dr. Zwimpfer, (which is kind of a badass name and fills me with confidence) said that it is in an area responsible for motor and sensory function. Not in the sense of humour part, or the memory part, or the accordion-playing part. Though accordion also involve motor and sensory, but never mind.
Anyway, I went to the appointment with Trish, Kim and Susan. They have been right beside me. So have many many other people. Since i wrote that first post about the thing in my head, I tell you what, I have been overwhelmed by the love. I can’t tell you. Louise was here to visit her brother and nieces and their families, and she stayed over an extra night. Shawn, my brother, said he and Wendy would come if I wanted them, my friend Glynnis in Alberta, she said she’d come too – I’m a little embarrassed, really. All this attention, and I feel fine. Really.
My students were on their two-week practicum when this all happened, so Monday the 14th was our first day back together. They were all excited about their practicum experiences, and I really wanted to hear about them, too, but it was also the last week we would be together. I had all three classes on Monday. Two of them meet twice a week for an hour and a half, and one meets once a week for three hours. Monday I wore my new Utilikilt (I bought it when I returned from the Ancestral Homeland – all inspired by Edinburgh. Way too expensive, but it has pockets!) and ironed my shirt and wore a bow tie and a wool suit jacket. I brought Ruby, my accordion. I told each class, after we did a few minutes of breathing together (I do that before every class, a few minutes of attending to our breath, settling in with the space and each other). I said, “I don’t know how to say this gently, really, I have a brain tumour”. Sometimes some of us started crying right away, sometimes a little further in to the explanation. I usually started crying when I got to the part about, “I’m not going to be able to finish the term with you”.
I referred to it as “a wee hitchhiker”, and I said it was almost friendly as brain tumours go, not to worry. And I said the neurosurgeon has a great name and looks like a squash player, so probably has good hand-eye coordination. That’s good in a neurosurgeon. I told each class that I love them, and I thanked them for their generosity and curiosity. In the morning class, a woman told me that she admired my teaching and my passion. A man told me that he found this class was a safe space to feel uncomfortable, and to talk about things fully, to hear different ways to thing about things. I said, “I didn’t tell you so you could say all this nice stuff about me, but, you know…you don’t have to stop either”.
Usually I write objectives for the class on the whiteboard. “by the end of this class, you will be able to…” but Wednesday I didn’t. I told my Wednesday classes, “my only objective is to get through the class with minimal snot on my shirt”.
I have to go now, Trish is coming to get me. but I will tell you later about Mike’s bow ties on Wednesday, and about sitting in a circle after class on Monday, and the emails and cards and shared tears and gifts – and my cousin Bev calling from Saskatchewan, “We can feel the love for you out here!” she said. It’s gonna be okay.
Hello, Beautiful People.
Erin here. I have some news. It’s not good news, but it could be worse news. Like, it could be the news that Donald Trump was elected president of the united states of America. That is really really bad news, so it makes my news kind of even happy in comparison. My news is that I have a brain tumor.
A fucking brain tumor! Holy crap. How does one even begin to think about something like that?
Here’s the story: Last week, Thursday November 3rd, I had a seizure. I was just lying around home, feeling a bit sorry for myself because I had a cold, and then one of my legs started moving. I kind of thought that maybe I was going to have a cramp, because I get cramps sometimes. But then the other leg started moving, and then I tried to reach down to stop them, and I couldn’t control my arms and hands either, and then my whole body was going all spastic – it was very weird and frightening. I shouted a couple of times, really loud, “AAAAAAHHH!” but it was the middle of the day and none of my neighbours heard me, and then it felt like there was a disk over top of my windpipe, and I couldn’t inhale or exhale. Then I passed out.
When I woke up, I thought it was a dream at first. I felt something on my tongue, like a pebble almost. But I couldn’t get it out of my mouth, so I looked at my tongue in the mirror, and it was deeply cut and very bruised on the right side. The pebbly bit was the beginning of a kind of scab. I realized then that what I remembered as a dream had really happened.
I called my friend Francesca. We had talked about getting together for coffee that morning because she was in town for a few days, from some far-off island where she lives now. But she got too busy, and I had a seizure…anyway, she said she thought I should go into emergency. So I did. I drove to the nearest hospital, a little Catholic hospital in a residential neighbourhood.
I didn’t know what to think. The doctor who saw me wore a checked short-sleeve shirt, with a stethoscope round his neck, tucked into one of the front pockets, and he looked like a doctor from a Norman Rockwell painting. He was kind and measured. He got me in to a CT scan. Twice. Once with dye, once without. He looked at my brain, and my torso as well.
“There’s a swelling on the left side of your brain” he said, “It might be an infection, a stroke, or a tumor”. He thought it might be a tumor. He said he would get me set up with an MRI. A CT scan is a computerized tomography. It’s a bunch of x-rays all taken together to make a kind of 3-D picture. A Magnetic Resonance Image is that – magnets and noise acting together to make a more detailed 3-D picture. The MRI was Monday the 7th.
I was in the hospital, still, because that would expedite the process to get me the MRI. You know what, I barely had a moment alone. At the end of August, I started seeing a new woman. We met earlier this year through a mutual friend, and shared a bit of spark right away. She’d already read my dissertation, before we met. Part of it anyway. So that made her pretty interesting to me. I’m a bit self-involved that way. When I got back from my epic trip to the Ancestral Homeland, I invited her to dinner. My travels, and the women I’d met along the way, the adventures I had all served to nudge me out of my grief and sorrow. I gained some confidence again, had a sparky connection with UK feminists who inspired me and woke me up. Old Erin returned to Vancouver. But even better than I was before.
Anyway, I invited her to dinner, we learned a bit more about each other. So far, we find each other interesting, smart, politically astute, engaging, kinda sexy too (but I’m not gonna talk about that stuff, no way!), and really funny. We spend most of our time together laughing.
Before I left for the hospital, I sent her a message to please call me when she got home from work. But I got impatient and decided to call her before she called me. Or text, I don’t remember if I texted or called. Anyway, she came whistling over to the hospital from where she was. She was with me when the doctor said, “it looks like a tumor, but it might be something else”. He told it to me straight. He said he didn’t know any more than that, but they would keep me until they could give me a few more answers. I started to cry, I couldn’t not. But not great snotty wracking sobs, just quiet frightened tears creeping down my cheeks.
I don’t remember now who came that first night. Susan’s daughter Iris came one day, she brought a whole bunch of treats. She’s been off sugar for some months, so is living vicariously through other’s consumption – gummy bear things, fancy beautiful chocolates, energy bars, san Pellegrino sparkling flavoured water, some other fun things to eat. My friend Kim came nearly every day, and my women’s step group came, too, once a few came and we had a meeting in a room on my ward. We talked about living sober, and being grateful and holding each other up.
When the nurse came to make sure my IV stent was in okay so they could put dye into my veins for the MRI, she looked at my arm and said, “It looks swollen, is it painful?” and we by and by figured out she was talking about my very impressive bicep. I laughed and flexed the other arm, “Which way to the gun show? That way!” We all laughed at that…
I haven’t been alone for hardly a minute since I got myself to the hospital last week. I know there are people I haven’t told. My radical feminist friends and allies met on Tuesday, I went too, because I wanted to be with them. Including my ex-lover, who’s mad at me – hell we’ve all been mad at each other for a good part of the last few months – but we always know we need each other, and we are essential to each other’s lives. She said to me, “I love you so much, Erin, you know that, right” it wasn’t a question. I do know that. And she knows I love her, too, no matter what, and forever.
One of the women I admire most, and who I know I’ve disappointed – but for whom I would do nearly anything (she knows that too), said at that meeting, she said, “you have a reputation for kindness, you show up for people. Now we can show up for you. We have a history, you’re one of us.”
My first lover, from the mid 1980s, when we were young and new and full of possibility – she lives here now, and she has brain cancer too – but worse than mine. She knows more than anyone else what this is like. She called me and said “I love you very much, Erin”. I told her we’re in a special club – I think only really really smart people get a brain tumor. She’s really smart, and she was instrumental in both my coming out as a lesbian and my embrace of feminism.
Everyone has showed up for me. It’s humbling and inspiring. My new lover came right from work the minute I sent word I was in the hospital. My oldest friends, my sober friends, my work mates, my feminist friends, everyone has stepped up. My doctor came, too – and she gave me a hug. Our first hug in the 26 years she’s been my doctor…The guys at the gym, my Terminal City Barbell Club – I went over for a workout yesterday, first day out of the hospital, and two out of the three of these guys, hands full of chalk and calluses, hugged me full and hard. The other one, a young man, said, “Erin, I don’t know what to say to someone who has something like what you have, …”
“Me neither, KC, I get it”
“…but I hope it’ll work out okay, and we’re beside you”.
My brother cried on the phone with me, “I love you so much, sis” and I could see him standing in his kitchen, holding the phone and wiping his tears. “Do you want me to come?”
Oh yes, I do. But I don’t need him here, and he would just be lost and neither of us would know what to do. There isn’t anything to do, really, just wait. Maybe do a little research about neuro-plasticity – how we could maybe re-shape the tumor into something useful, brain cells that I can use to climb walls and race trains – I told him not to worry. I’ll let him know what to do, as I know more. I told him I love him too. He is a lovely, lovely man. I’d think that even if he weren’t my brother.
The tumor is cancerous, looks like, but it might be the kind that just sits there, glowering, but doesn’t move or grow at all. They’ll find out more when they do the biopsy, November 21st. If it’s terminal, I can think of a few magnificent incendiary actions I could take that will help all of us in the wake of that nightmarish election to the south. But I don’t think I’m going to die any time sooner than the usual four-score-and-ten.
I asked the neurosurgeon if it was caused by accordion-playing. He didn’t think so, but no one can be sure. it’s not from cell phone use either, and there’s no indication it could be MS or a stroke or infection. Nope. It’s a wee tumor, that’s all. I can get away with all manner of bad behaviour now! Naked accordion playing, swearing in church, whatever I want. I would’ve thought i’d want to drink good whisky and smoke smooth cigars. But I don’t. Not even a little bit. I AM drinking coffee late into the afternoon though. Rebel me.
I’m gonna wrap up now, I’ll keep you posted. As cancers go, this is pretty good, really. It’s kind of romantic and exotic, for one thing – not icky like colon cancer – and brain tumors don’t hurt. That’s a relief. I am grateful, more than anything, even more than afraid, I am grateful.