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Compost

I didn’t count how many small holes I drilled into the 92L tub, suffice to say it took over an hour to finish making them. I began pulling apart cardboard into small pieces to start the carbon layer on the bottom, and that took longer than the drilling. When I said my partner could make the call on whether to get the 80 or 92 litre tub I wasn’t thinking of how generous ze is, I should have known she’d choose the slightly larger and therefore more expensive one.

We’ve been collecting compost since I moved in in March but we had been sending it to my parents farm for the compost heaps there. But with lockdowns and our freezer filling up with weeks worth of fruit and vegetable scraps I turned to google to see what I should do.

And I needed a cheap option, without the theatre industry running how it usually does my bothfriend and I don’t have any income. I guess I wasn’t just looking for a solution, I was also looking for a project. Something I can spend time on regularly and have a measurable end point for. Something I can say I’m working on if anybody asks. Something that forces me to stop feeling sorry for myself.

It feels too dramatic to say the compost bin is meant to give me ‘a sense of purpose’ or that it ‘will fill the void of theatre’. But it does provide some comfort, and maybe also a sense of hope. A commitment to a future when the scraps have all broken down and I can load them into the car, drive to the farm and spread the compost on the veggie garden there.

2020 goals

I’ve never felt comfortable with resolutions.

As a teenager we’d have a family meal early in the year, mum would go around the table asking for our resolutions; it always made me sick to my stomach.

I don’t know if it’s because I knew failing to follow through on a resolution would lead to guilt and possibly even shaming from my family. I felt as though voicing something trapped me. Forced me into something.

One year I didn’t say anything so I was roped into my mom’s resolution to go on a health kick. It wasn’t something I felt was necessary for me and I didn’t commit.

I don’t want to start 2020 half heartadly attempting to stay on track on a resolution. I want to start it more purposefully. I have goals for the year and I’m going to work towards them in my own time. And because it’s on my time I can’t fail them I can simply delay their completion.

This year I want to

  • create content I am proud of
  • get better at communicating my needs and my limitations
  • improve my podcast editing skills
  • grow stuff in the garden
  • bake more
  • reduce the amount of waste I generate
  • pass my uni subjects
  • be more actively aware of my emotions and moods
  • avoid buying new things and instead get stuff second hand
  • actively try and work in my field
  • be honest about how I am feeling

“Have you done yourself an injury?”

Someone decided figuring out why I have a bright yellow walking stick would be a great conversation starter.

CW: Ableism

A well meaning question from a stranger I gave directions to. 

We were standing in the lift from platform 10 of Flinders Street station and a person with a suitcase decided figuring out why I have a bright yellow walking stick would be a great conversation starter.

I accept that I made the stick very obvious by spray painting it with Dulux “Daisy Yellow” spray paint but I didn’t do that with the intention of inviting questions, I did it because I thought it would look cool. 

This person asked if I had an injury and I said ‘No, I’m disabled’ and turned to push the lift button. I wish I’d tacked on another sentence though, something about how it’s rude to ask a stranger ‘what happened?’, ableist to ask why they need a mobility aid and horrible to ask because you’re trying to ‘catch a faker’.

If the person wanted to have a conversation they could have asked where I was headed that evening, where I got my cute skirt, how I decorated my kick ass stick or of I knew any good places for a snack. 

There are so many ways to interact with disabled people respectfully and with kindness, and I was on my way to work in a skirt I got from Myer six years ago using my spray painted stick, and on the way I’ll probably stop at Woolworths to grab some snacks.

International Diasbility Day

CW: emetephobia, doctors, appointments, medication, rhuematologists, laser, acupuncture, physio, pain, diagnosis, ableism

It’s disability day and I’m disabled so I have some words to share

I have fibromyalgia, a condition largely characterised by chronic pain, brain fog, fatigue, pain responses to certain sensations, and many more symptoms. The true cause isn’t known but it’s theorised that injury, illness and trauma that occurs before the brain is fully formed at 25ish plays a large part.

And I have the trifecta; pneumonia and many chest infections, three broken bones, three surgeries and some horrible experiences all before I was 21. I started noticing I was really struggling on July 24, 2018, immediately after I arrived in London by myself for I five month trip including time at EdFringe and a uni exchange.

I kept my struggles and needs largely to myself but a few times I couldn’t (and can’t). There was a whole week where my newfound uni friends had to get me to bed and loaned me pillows cause my ribs were so tender they couldn’t rest on the matress. There were ten days where I had to be escorted to the bathroom. I used a lot of money ordering food in and spent a lot on pain killers in those five months.

Then I got home and continued hiding everything from my family. It got harder and harder to manage. Eventually my GP sent me to a “highly recommended” rheumatologist. I spent three hours filling out all the paperwork beforehand the first appointment. After reading my paper work and squeezing my finger joints to check for arthritis he diagnosed me with fibro and sent me home.

I went back a few weeks later to try and get advice and he made me cry four times within half an hour. I left and couldn’t see well enough to drive. The four steps at the front of his clinic that could easily install a ramp should have been a sign that he wasn’t the ideal rheumatologist for me.

So I found a new one who actually cares. It’s hard to find practitioners that actually care about chronically ill people, take us seriously and don’t accuse us of ‘faking’ or ‘drug seeking’.

She put me on a muscle relaxant tablet to try and help my sleep and figured out swimming helps.

And swimming and meds helped until I went overseas again and spent a month working at Edinburgh Fringe. I had a wonderful time but I returned from the most inaccessible city I’ve ever been to a bit worse off health wise. We’re talking constant nausea, vomiting, joint pain, memory loss and twitching. More than my normal symptoms.

So much so that I went back to my good rheumatologist despite hating appointments and we’re investigating arthritis at the moment.

And while that’s happening I’m doing my best. I’m able to leave the house because of the advice of other chronically ill people and the help of my parents. A family friend with endometriosis recommended a functional/integrated GP who’s reduced my vomiting with an appropriate diet and three medications. A friend with fibro, POTS and gastroperisis recommended a laser acupuncture place that has reduced nausea and some pain. And I found a physio how helps with chronic shoulder pain and recognised that my whole body has muscle patterning problems.

I’m incredibly lucky to have parents who can afford to pay for these treatments and investigations. I can’t afford it myself and the reality is that many disabled people who can’t afford help simply go without. The NDIS is hugely underfunded and largely mismanaged.

And this is just one obstacle we face as disabled and chronically ill people. We deal with constant ableism; in public and private spheres, online and in person. Many people are ignorant or misinformed. Some are deliberately violent. Some pity us. There are some able bodied people who have good intentions and want to help, but then assume what help is rather than asking.

And it’s hard to call it out sometimes. Disabled and chronically people get overwhelmed sometimes and just don’t have the energy or words to explain.

So on this International Disability Day I’m sharing for two reasons. One, maybe someone reads this and it sounds familiar so they decide to to seek a diagnosis (whatever that looks like; self diagnosis is valid, especially with appointments being so expensive). Two, maybe an able bodied person reads this and reconsiders their behaviour and starts working to learn more and be a better ally.

My favourite resource for learning is twitter. Some people to follow include: @BlondeHistorian @dominickevans @Tinu @Wheelie_Happy @HamOnWheels @VilissaThompson @painandcats @_sbsmith @bennessb @karriehiggins @ellenfromnowon @EbThen @twitchyspoonie @robinmarceline @PurpleGoddessWA @qjusttheletter @imognerq @JessHealyWalton @Imani_Barbarin @itsmollyeliza @Asher_Wolf @chr0nicallycute @SeeMiaRoll @bedboundbabe @blindandb0ujee @carlyfindlay @DisVisibility @ellle_em @annikavictoria_ @annieelainey @WheelsofSteer @briannasbell @ellenffb @TheLadyFuchsia @jeshyr @MusicElizaHull @MrBrokenEyes @Erinkyan @Keah_Maria @MsRachyDoodle @CaneInPink @OxleyAnnabelle @_Nic_Lee @cubbieberry  @RustyHoe @BeingCharisBlog @UntoNuggan @tommyinboots @marastories @unicornthorn @jilly_peppa @Wooden_MariaGO @MortuaryReport @venusbetch @lizzylynngarcia @rollwiththepunches @4WheelWorkOut @TinyWriterLaura @laurawritesit @jaxjackibrown @jeshyr @JacdenHouting @SnoringDoggo @coffeespoonie @mssinenomine @GHMansfield @BlindFury_5428 @moonyeyed @myceliorum @Lilysea @BlytheByName @jessineave @JessicaOOTC
@PillPopcast

Obviously it’s a long list but every single one of these people have important things to say, taught me a lot so far and helped me get to the point where I’m proud to be disabled and I don’t hide what I’m going through anymore.

History of June 1-7

My classmate sent me an email with three links about jellyfish as part of the research she did in response to one of my poems

My friend Caris writes really cool stuff and people know its cool and are publishing it and I get to read more of her writing soon and I’m excited

The government keeps changing how my boss has to pay me and it’s confusing and money makes me very anxious

Someone said there were options for cheap accommodation in London but I think we have very different ideas about what’s cheap

I’m in a Facebook group that has lots of Bee content and it makes me happy

There are gonna be some really cool events in Melbourne soon

I am anxious about money and apparently I can make more by answering questions so I guess I do surveys now

Hacks for maintaining control

Those hacks you see on Facebook and Instagram have nothing on me. Everyone has a hack they swear by, a story of ingenuity they like to share. Some people have more than one, usually people with more stories are those who’ve been forced to make do without all the comforts of home and access to conventional tools. When we travel or move out of home we become veritable mavericks and even if we return home we use the new tricks we’ve learnt, even if only to demonstrate how smart we became.

Without a washing machine I quickly figured out ways to do my laundry without forking out cash at a laundromat. I started by washing my socks in the sink. They take the longest to dry so I rinse them with cold water, fill the sink with warm soapy water and let them soak, drain the sink and take the socks out, put the plug back in, grab some soap (any soap cause soap is soap) and scrub one sock at a time inside and out, drop the soak covered sock into the sink, and repeat until every sock has been scrubbed, then run hot water into the sink until all of the socks are submerged, let them soak, remove the plug, run some cold water over all the socks, squeeze excess water out as I remove them from the sink, then rinse each sock until there is no soap suds left, find a place for them to dry and rinse the sink. After socks I’d do t-shirts and underwear. You’d be amazed how many things you can hang off a bunk bed and locker door. In a hostel I’m vigilant and my paranoia spikes but knowing that I am in control of the cleanliness of my things helps somewhat.

I figured out lots of ways to keep control and do things without spending any money. I can turn a scarf into a bag because I refuse to pay for one. I learnt how to open a can with a spoon from some Russian guy on YouTube, he’d made the video for people preparing for the apocalypse, I watched it because there was no way I was buying a can opener for a hostel in Berlin. That hostel was so shoddy that I cooked an egg on a plate over a candle (much like they did in chitty chitty bang bang) because there was one hot plate for a ten-story building where seven school groups and five soccer teams were staying and I was impatient.

When I moved from hostels to uni accommodation I joined a team of students on shoe string budgets and we started to learn more hacks than I can remember (I actually asked them to send me hacks we used and there were things I’d forgotten). I turned corks into doorstops and they were taken by maintenance because you’re not allowed to keep fire doors open in the UK. Because I’m not healthy and strong enough to open the heavy fire doors I then used an actual doorstop, when maintenance took that I used a plastic spoon and a bottle opener as a door stop, when the plastic broke I started to use my walking stick. At that point I think maintenance recognised I needed the door open and they stopped removing my doorstop.

I watched Caris make coffee in a bowl and then filter it through a tea towel because the French Press wasn’t available. Lauren, Mie and I used freezer bags as piping bags when making mini meringues. We used a water bottle as a rolling pin to make a pumpkin pie and blueberry turnovers. I used a whisk to mash some potatoes because our potato masher was stuck behind the broken oven. Lauren used hand soap to do her dishes, soap is soap. For our Christmas dinner we ate in the corridor off the top of our food boxes because 15 people wouldn’t fit around the eight-person table.

Lauren and I went through the glass recycling bin and found three shot glasses, one cup, a mason jar and two glass dishes that were the perfect size for mini crumbles. When I ran out of jars for the jam and pasta sauce and marmalade I made I returned to the glass recycling bin. I wanted all my flatmates to learn the value of taking all the free things they can because free stuff will always be useful at some point. Everyone knows the value of tote bags, I now know they can replace draws and be used as a delicate bag in the wash. A tube that had lollies in it was rescued from recycling so I could put my knitting in it. One of the cups I got at the welcome tent in o-week was a pen cup then a place for spare change before it held all of my magnets so they wouldn’t be crushed in my bag.

On the way home Caris, Ethie and I had too much stuff and not enough space in our bags so we all got a shit tonne of vacuum bags and hoped and prayed and sat on each others suitcases till they shut. I had two bags and one had to be posted back, instead of paying to get it shrink wrapped I bought a roll of glad wrap and used a pub table to turn the bag around on while I wrapped it myself. I was a bit worried a custom dog might smell the beer from the table top on my bag but I posted it anyway.

I’m home now (and so’s my bag) but I still make up ways to do things unconventionally, maybe because it lets me pretend I’m still travelling, maybe because I need to make things accessible, maybe because it reminds me of the weird things my friends and I did and maybe because it lets me feel like I’m in control of something cool, something other people might marvel at. 

Marmalade

Marmalade was different. It was made on a Saturday after I’d said farewell to nine people and while I waited for others to finish packing so we could watch tv together for the last time.

The citrus fruit had been sitting in a plastic bag for a few days waiting to be used. I was meant to cook the maramalade with friends but that didn’t work out because packing up to leave takes longer than expected.

So I worked on it by myself as my flatmates came in and out of the kitchen to distract me. And I guess that’s alright. These friends will in my life even when they can’t be there in person.

I suppose marmalade is a pretty transparent metaphor. A jam but not quite, given a different name because it’s a slightly different thing. The people who I called flatmates I now call my friends. Because there’ll be just a slight difference.

Jam

When you don’t want to say good bye you say farewell, hug, wave one last time and then make jam at 4am with all the people who also can’t process the emotions caused by someone’s absence.

We started with strawberry jam, and then started to make a mixed berry jam. We were in for the long haul. Not ready to go back to bed. While waiting for the fruit to simmer I noticed the baileys sitting a top the fridge with a bow around its neck. As if it was a gift saying ‘drink me’. And what was the harm, I was drowning in sorrow anyway, why not add a drink?

I added three. Baileys, Prosecco and Limoncello make an interesting combination. Not enough to get me drunk but enough to make me warm and soft. Less hard edges to cut other people with.

And the alcohol made one friend more confident. Sharing what she usually only says to one person with the whole room. I love looking after my friends and looking after drunk friends is no exception.

There a certain honesty in the kind of drunk someone gets when they’re melancholy. A certain way people reveal what is truly important and valuable to them.

And at 6am with a few drinks, some preserves and some good friends who were also trying to say goodbye a few hours after our friend had gone I knew that what I value is their presence in my life.

Unconditionally and with no limit of if they’re there in person or simply through messages and postcards. Because we’re never saying goodbye. We’re always going to be saying farewell over jam.

Orbs

There are orbs everywhere, holding peoples spirits and releasing them when it’s been too long or too much.

The orbs are fragile, not like glass is fragile, but fragile like metal. Strong to a point, get it hit enough or try and bend it when it’s too cold and it’ll change.

And the orb isn’t meant to change, only the things inside the orb are meant to change. If the orb and the spirit both change there’s too much. The mechanics of it are hard to explain but throw in some words like ‘overload’ or ‘critical mass’ and it sounds logical.

The spirit has to find a new orb but there’s no logic in how that happens, just hope and magic.