the box (poem)

This is a new poem.

I have locked myself in a box
it’s a small box
too-small box
gender box
sexuality box
race box
I have locked myself in a box
or was it you?
did you build this box, and stuff me in it?
before I was even born, did you make this box for me?
without asking
without knowing me
you made a box and called it girl
called it straight
called it black
but none of those boxes quite fit me

I have been cramped for years
joints folded tight tight
face pressed into my chest
I have locked myself in a box that you made
I was locked in the box that you made
it was cramped and uncomfortable
I couldn’t breathe
I tried to cut parts of myself off to fit
but they grew back
they wouldn’t go away
eventually I broke the box
I couldn’t fit at all
all the parts I tried to remove are too big for the box
it’s a small box
too-small box
you made me small in the box

sometimes I try to climb back in
it’s not comfortable but some days it feels safe
just my head pokes out
I almost fit
some days I want to fit
it’s easier if you fit in the box
easier if you have the right parts
right face
right brain
right heart
I’m not right
all wrong in fact
that’s why I don’t fit in the box
the small box
the too-small box

I locked myself in a box
as a child
I grew up in a box
a small box
a too-small box
to break the box
I had to learn to see it
I had to feel it crush me as I grew
to feel my breathing constricted
my limbs twisted and bent
I had to let the box damage me
before I could break free

I was locked in a box for years
a small box
a too-small box
and it takes years to break free of the box
it’s always there in the corner of the room
somehow I can never throw it away
the box
the small box
the too-small box
I’d like to throw away the box
but I’m afraid you’ll force me back in it
if you find it lying around outside
so I keep it safe

the too-small box smells of fear
and despair and denial
it smells like where hope goes to die
it smells like where I used to live
but I don’t live there any more
I live outside the box
but I carry it with me
all the time

© bardofupton 2019

Writing project, December 2018

This month’s word is unicorn, meaning “a mythical creature resembling a horse, with a single horn in the center of its forehead”.

——————

Everyone knew there were no more unicorns. The last known unicorn had died in a zoo, in 2025. No wild unicorns had been seen for decades before that, despite extensive searches.

And yet, the rumours persisted.

T was convinced they were true. He spent hours scouring all corners of the Internet, following up leads in obscure forums and repeatedly viewing blurry videos which claimed to show unicorns. He even met furtive strangers in dingy pubs to get his hands on hardcopy evidence. He’d plotted alleged sightings on maps, and was saving up to visit the area where the most encounters had been reported. He was not the most prolific poster on the unicorn forums, but he was one of the most persistent.

T knew that if there were still unicorns, he would find them. How could he let all that beauty, that wondrous power, remain hidden? It never occurred to him that the unicorns, if they existed, might have their own ideas about that. There were those who felt that if there were unicorns still, they should be allowed to live in peace, and PowrCorn882 was one of them. They would often argue for hours online with T, trying to change his mind. It never worked; both of them always ended up more entrenched than ever in their original positions.

Although the search for unicorns was the driving passion of T’s life, he still had a day job, doing data entry for a widget manufacturer. It wasn’t exciting, but the pay and hours were reasonable. He had just finished his shift and was on his way home when a van pulled up ahead of him and several masked people piled out. They grabbed him by the arms and hustled him into the vehicle where they blindfolded and tied him up.

T was so surprised he didn’t even struggle. Secretly, he was thrilled. He’d read about this kind of thing happening to other people, but he’d never expected to be on the receiving end himself. He regarded it as vindication, really – if he wasn’t on to something, they wouldn’t have kidnapped him, right? He hoped he was going to meet someone high up in the conspiracy, and not just henchpeople.

As a result of this thought process, T was surprisingly chipper when he was dragged from the van and into a small room. He was pushed into a chair and then the blindfold was removed. T blinked a few times, his eyes adjusting to the light. He was sitting at a table, with a masked figure seated across from him.

“You have to stop trying to find unicorns,” the figure said.

“You’ve proved me right,” T replied. “I must be on to something or I wouldn’t be here.”

The figure sighed. “I thought you’d say that, but I wanted to give you the chance.

“I’ll never stop now,” T replied.

“As you wish,” the figure replied. They gestured to the people who had brought T in, and two of them stepped forward, grabbing T’s arms and dragging him to his feet.

“Wait!” T cried. “Don’t I get to know who you are, or your plans, or anything?”

“It’s not a movie, T, it’s real life. I’m not going to monologue. You had a chance, you chose not to take it.”

T stared angrily at the figure as he was dragged away.

“Who are you?” he shouted. “At least tell me that much!”

The figure shook their head, standing up and walking away from T. They vanished through a door on the opposite side of the room.

T was dragged out another door, along a featureless corridor, down several dimly-lit flights of steps, along another corridor with rough-hewn stone walls, and into a small cell. He was dropped unceremoniously on a small bed. His captors cut his bonds and left the room, locking the door behind them. T stood up and rushed to the door.

“You’re just going to leave me here?” T asked incredulously, peering out through the slot in the door.

“Yup. You’ll be fed regularly.”

“Yeah, we’re not animals.”

The two exchanged a glance, laughing.

“But… But…” T stammered.

“You’re going to die here,” the first explained. “That’s the end of your story.”

They strode away, laughing. T let go of the bars and slid down, burying his face in his hands. So this was how it ended. He hadn’t seen that coming. The rest of his life, in this tiny cell.

“And I never even got to see a unicorn,” he sighed.

© bardofupton 2018

Inkwarriors, part 2 (Fiction)

Meril stared at the book. It was extremely thin, more of a pamphlet, really. She hesitated, then flipped it open. At least it was a change from studying.

Elise was the child of a soldier and a weaver, and would therefore have the choice of either career. Her father hoped she’d choose to be a weaver like him, and stay close to home in safety. Her mother had no opinion on that or any other matter, having died in battle when Elise was only four years old.

“At least she got a choice,” Meril muttered sulkily. Inkwarriors always married within their community.

Despite her father’s best efforts, however, Elise had no interest in weaving. Even as a very young child, her only interest was making people laugh. And she was good at it. Her original repertoire was silly jokes that were mainly funny due to her age and the way in which she told them, but as she got older she developed into a true comic.

At this point, her father realised that they had a problem. Somehow Elise was convinced that she was going to be an entertainer. He spent many days and nights trying to convince her that she could be either a weaver or a soldier, but never a performer. Elise refused to budge. She pointed out that she had neither aptitude nor interest in either career, and that she was a talented comedian and it would be a waste of her skills to take up any other calling.

“Besides, it’s a bit late now, isn’t it?” Elise argued. “I’m too old to start learning those skills.”

Her father sighed. “It’s my fault. I should have insisted you choose one or the other years ago, I know, but you were so happy. And you’re all I’ve got since your mother died. I just wanted you to be happy. But now I just want you to live.”

Elise laughed. “Who’ll know?”

“Everyone,” her father said. “Soon you’ll have to register your choice and start working.”

“Why can’t I just register as an entertainer?”

“Because they’ll kill you!” Her father stopped, took a deep breath and tried to speak more calmly. “It’s forbidden.”

“But when they see how good I am,” Elise began.

“Nobody will see how good you are if you’re dead!”

Elise rolled her eyes and laughed. “When was the last time that happened? It’s just a threat they make to keep us in line.”

“It’s not a threat, Elise.”

“Have you ever seen it happen?”

“No, but…”

“Exactly! I’m going to do what I want, and I don’t care if they disapprove.”

“But…”

Elise ran off, confident that her father was being overprotective once again. Her father was equally confident that he was not, but could think of no action he could take. Even if he had known who to bribe, he had no money, and he doubted anyone important could be bribed with the poorly-woven blankets that were his main output. He decided to focus his energy on convincing Elise to change her mind.

He failed.

When the census takers came to the village for the triennial registration, he begged Elise to lie and say she was a weaver. Elise refused, laughing off his protests.

“As if they’ll care,” she said. “They just want something to put on their forms.”

And off she went to the town hall.

Her father followed her, waiting outside the town hall while she registered, for registration was considered a private affair, even though it was a foregone conclusion in virtually all cases. He waited for a long time. All the other young people had gone in, registered and left, but there was no sign of Elise. At last, when night was starting to fall, he gathered his courage and entered the hall.

An official was seated at a table, writing. Servants were tidying the room, and a couple of large men who were clearly bodyguards lurked at the side of the hall.

“I’m looking for my daughter, Elise,” he told the official.

“She’s gone.”

“Gone?”

Meril sighed. “So she’s dead, right?”

“Executed,” the official replied.

“But… But…. Didn’t you let her explain?”

“You know the law. So did she, even if she thought she could flout it. Why waste time with a trial when she’s clearly guilty?”

Elise’s father stared at him.

“Where’s her body?”

The official gestured, and a servant brought a small box over and handed it to Elise’s father.

“What’s this?”

“Your daughter.”

Elise’s father opened the box. It was full of ash.

“Due to the nature of her crime,” the official continued, “she cannot be buried on holy ground.”

“What did you do to her?” Elise’s father screamed.

The bodyguards grabbed him and began to drag him from the room. The official stared coldly at him.

“I merely carried out the sentence prescribed by law. It was your responsibility to teach your daughter the law and ensure she followed it.”

Elise’s father sobbed as he was removed from the hall. He knew the official was right, that he had failed his child, that the true crime was his.

Meril rolled her eyes. “Oh please! What blatant propaganda. Like anyone would be convinced by that.”

She tossed the pamphlet on the desk, and picked up her slate and chalk. Maybe she should at least practice her glyphs.

© bardofupton 2018

Breast cancer – a non-binary perspective

Content note: cancer, surgery

It’s weird, getting breast cancer when you have an ambiguous relationship to your breasts – suddenly you’re thinking about them constantly when you’d managed to largely ignore their existence. I mean, cancer sucks regardless, no doubt about it. But breast cancer is one of those really gendered cancers, and if you’re a person with gender issues anyway, the whole process is very odd. And disconcerting, and very very cisnormative, not to say cissexist.

Continue reading “Breast cancer – a non-binary perspective”

My cancer experience

Content note: cancer

I found my breast lump on my birthday. I was in bed, lying on my front and I thought “ow, that’s uncomfortable”. I reached over to adjust my breast and felt a lump – and not one of those “grain of rice”-sized ones either – this was huge, a good 3 cm or so. I tried to tell myself it was just a cyst, but I knew it wasn’t. I went to my GP and got referred onto the cancer pathway. And from there it should have been straightforward, but it really really wasn’t. Or at least it didn’t feel that way.

I remember certain moments very distinctly:

  • my GP asking me, incredulously, if I really hadn’t noticed the lump earlier – uh, no? or I would have come to see you before
  • my breast surgeon giving me the results of my biopsy by asking me what I thought the results were – that is definitely not how to break bad news, mate!

The rest is a bit of a blur. I remember the frustration of being given minimal explanation of why they chose my treatment regime, and searching online for more information and finding more information but less detail than I really wanted. Mostly I remember trying to get information out of the hospital – appointment dates, where I needed to go for my surgery. It should have been easy, but unfortunately my cancer nurse went on leave for 3 weeks just after I was diagnosed, and the other cancer nurse she gave me the details for was quite unfriendly, so I was not motivated to ask her for more help. This rendered the entire process way more stressful than it had to be. There was a lot of crying at work after yet another fruitless phone call to someone who couldn’t – or wouldn’t – help me. Somehow everything seemed to be going simultaneously glacially slow (when I was waiting for results or trying to get information) and super-fast (when they needed me to do something).

After all that, the surgery was actually kind of a relief.

About 7 weeks after I found the lump, I had a mastectomy and axillary lymph node clearance, which was both more and less traumatic than I thought it would be. On the one hand, it didn’t really hurt, although there was (and still is) total numbness in that area and some surrounding areas. On the other hand, it was surprisingly traumatic having a breast removed (given my ambiguity towards my breasts), although I guess that was due to it not really being my choice.

And then there was chemo – everyone’s favourite treatment (no, not really).

Chemo was a truly horrible experience with some amusing bits (orange pee!) and a whole host of appalling side effects which weren’t really mentioned – everyone knows about the nausea and hair loss and fatigue, but then there’s the neuropathy – I had to pull the plastic seal off the milk bottle with my teeth, because I couldn’t grip it with my fingers.

There’s the weird taste effects – everything tasted like it had come out of a drain.

There’s the fact that nobody can tell you when or if the side effects will go away – all you get is “well, they go away for most people”.

There’s the fact that you never know which side effects you’re going to get – I got the agonising bone and joint pain (days when I could literally feel every bone in my body, because every single one hurt; days when I felt like my bones had splintered beneath my skin), but I avoided the oral thrush (thankfully). And although I got a couple of infections, I never got neutropenic sepsis or ended up in ITU, so I got off lightly in that respect.

Then there was radiotherapy, which was both more intense (5 days a week for 3 weeks) than chemo but also far less difficult. The hardest part was lying still for 30 minutes. The best part was playing the world’s crappiest computer game – trying to hold my breath so as to keep one bar within another bar on the screen that I could only see via a mirror above my head. That was surprisingly difficult some days. The worst part was that the side effects peak about two weeks after you finish, which happened to be during Christmas, so I basically had a really really bad sunburn over Christmas.

And then I started the end-phase: 10 years of hormone therapy.

The whole process of cancer treatment, for me, was like getting on a roller coaster. I had started the ride of my own volition, but after that I didn’t have any options – it was go here, do this, have this test, take this treatment. And all with minimal explanation. Which, okay, I get it, doctors are busy and there are set protocols for treatments for various cancers, but… I didn’t feel like I was taking part in treatment, I felt like it was happening to me. And it’s fast, too fast to really take in as it’s happening. I genuinely thought I was fine with having cancer for about 6 months, and then I suddenly realised that I was not fine at all.

There’s a metaphor about the storm of cancer, which I was introduced to during a post-treatment, moving-on-after-cancer course:

Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.

Then a massive storm hits – cancer.

Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.

Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port….

But then your boat just stops…. you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.

That didn’t resonate with me at all. I definitely felt, at the end of active treatment, more like I had just gotten off a roller coaster: faint, wobbly, and a bit sick. Treatment was not a journey or a battle for me; it was an experience that rendered me powerless. My cancer team were not my rescuers. Some of this may have been due to being a healthcare worker myself – I have too much of an insider’s perspective to see my team as saviours. Professionals, yes, but not saviours.

Before I got cancer, I always thought it was, let’s say, over-hyped. Yes, it’s an awful disease, but so are many others. I never quite got why cancer had this special place in our culture. Then I got cancer, and it really did make me rethink everything, question who I was and who I wanted to be and what I wanted to do with my life. It felt like my body was betraying me on a really fundamental level – it couldn’t even manage to do cell division right! And having cancer means thinking about dying – and facing the fact that you might die much sooner than you thought. And acknowledging that your cancer could come back, multiple times, and there is very little you can do to affect that.

So cancer has absolutely changed me, both for the better and the worse. The worse is mostly physical, side effects that haven’t gone away or an exacerbation of my previous conditions. The better? That’s more on the emotional and psychological side. I’m happier – which is kind of a weird thing to say, right? But I am. I guess because now I know, in a really visceral way, that it absolutely can be worse. So until it is worse, I’m going to try to enjoy whatever time I have left.

© bardofupton 2018