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.

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.

Home?

I got a very cheap box of 100 postcards so I can keep in touch with my friends all over the world for less than 10pence per card. I’ve now got homes all over the world and people I need to stay in touch with. I have lots of post cards and the design on the front of the card always influences what I write.

When I picked out a card with a merry go round of shoes with mirrors and lights I thought about my sisters old walk in wardrobe. So I wrote to Sarah.

I told her about how my room here feels like home. It’s my space, decorated with as many knick knacks as I could get for free. My pin board has some lovely cards on it, the fairy lights give off a lovely soft yellow light and I have craft supplies on the shelf.

I told her I’m looking forward to decorating a new room when I get back to Australia because I get to make a new space my own and thats something I’ve become very good at.

Our family has moved house so many times that I’ve lost track of where we’ve lived and when. I can pack up my bedroom in an hour but I always put more time and effort into setting up a new room. I enjoy the ritual of going through memories and deciding where they belong.

I don’t let go of things easily, I have artwork I did when I was three, class work from year five, the first history report I ever wrote, every swimming certificate I have ever earned, netball trophies spanning seven years, birthday and christmas cards from my whole life, my first pair of shoes, art I did in year seven, a harmonica that doesn’t work. And all because they hold memories.

Sarah remembers everything, almost down to the hour that it happened. She describes things in vivid detail and is always ready with a joke or reference to something we did years ago. My brain isn’t good at memories, I have blank spots spanning entire weeks and months. I didn’t tell Sarah that because I didn’t know how to explain it to her when I’m so jealous of her ability to remember things.

The only time my memory works well is when it’s connected to a place. I make a space my own so I can remember what happens in it. I have photographs of my old rooms that I can look at when I want to remember something that happened there. Home is in those photos and in my year six maths book and the 70 paper cranes I folded during a literature class in year 11 and these things are memories I cart from house to house in boxes so I can put a part of home into every new house. Because Home to me is just a familiar memory, and I have so few of those.

First Post

The first post card I ever recieved was from Nanna Mac. It was written in beautiful flowing cursive which my mum and dad had to help me decipher; I was eight and still using a pencil to write block letters.

The card was from Bunderburg and Nanna had written about her trip to the brewery, how suger can is harvested and the average rainfall whilst she had been there. I still learn more about average rainfall from Nanna than I do from the news. She visits Queensland every winter and I always look forward to a post card.

Nannas post cards always teach me something about the history of a place. I always wanted to learn from Nanna, and she was always a wonderful teacher. She taught me how to read music, play piano, knit, mend a button hole and replace a button, bake scones and sponge cakes, to put sugar on top of my strawberries, and how to drive. And she taught me that all of these skills and hobbies are also a way to communicate.

A way to say ‘I love you’ without words. Nanna is not bad with words she’s just better at playing music, baking, knitting, sewing, leafing through photo albums and hugging. She has told me to be careful, get home safe, do well in school, be on time, stay warm, eat well, take a breath, listen, move, resist, recover, rest, soften and communicate without uttering a word. Some things don’t need to be said allowed to be important.

But even knowing this I still constantly have words in mind. Ready to say because I’ve overthought and rehearsed plenty of interactions. And when the words are too much I write them all down so that maybe I’ll have a chance to sleep.

And sometimes I write them all down on postcards. Sometimes I write down things that I’d never say in person. Sometimes I address the postcard before I write on it, sometimes I only know where to send it after its written. I am still trying to figure out why that is but the mystery doesn’t bother me enough to stop the words.

So I write. I write to friends and family and my partner, I write to the post officer, I write to buildings with strangers, I write to have something to do on the train, I write to get those messages on facebook saying “i just got your post card and it made my day”, I write so that someone can hide my words away and just look at the picture, I write to show people that I may be incredibly unwell but I’m still holding the pen.

I write the words and decide to send them away, always taking a photo because the words can leave my head but I still want a way to show they’re mine.  They are a journal entries that I’m scattering around the world.

I write to say thank you to Nanna for teaching me about words.

I know they aren’t the only way to communicate but I still want to be good at them. If thats possible.