2020

I'm standing on the grass behind my house on an autumn day, and you can see Norwegian mountains behind me. I'm a white woman with brown hair, wearing a puffy winter jacket and multi-colour scarf.
Me and the Børvasstindene mountains to the south of Tverlandet

2020 began so innocently

In January 2020, my Swedish daily commute shrunk to 1/4 its previous length when I moved into a central Gothenburg apartment. I missed the family I had been living was but it was a monumental shift. Grabbing pizza or making sushi with friends, walking home exhausted but buzzing from judo training, and waking up at 8:30 for 9:15 classes were welcome novelties. I loved having something of an IRL (in-real-life) social life, because even when I lived in Aotearoa, residing on the North Shore in sprawling Auckland hadn’t been conducive to impromptu catch-ups with friends either.

In January and February, I also occasionally fretted over assignments, practised Swedish when I felt like it and still had energy left to get lost in a book. I don’t know if I’m romanticising a little. All I can say for sure is that February was a life-time ago.

Covid+

When I chose to go on a walk with a friend in March, little did I know catching Covid would transform practically every aspect of my life for an indefinite and ongoing period. To put that in perspective, I’m still very much alive, and so are all my close friends and family. Having moved to Norway to live with my parents in April, I’ve had the best support I could ask for from them, financial security, a very understanding supervisor and wonderful friends in many countries. I can’t overstress the difference all of this has made; I can barely imagine functioning without it.

Acknowledging all the horrific ways in which Covid, in combination with untold other factors, has upended so many people’s lives this year, and the privilege of my own support networks, I’ve still found it a tough year  constant adjustment and of needing to get to know my body and pay close attention to it in a sustained way I haven’t done before. Figuring out, over time, that long Covid was indeed going to be a long haul, and learning to manage it and set expectations of myself accordingly, has been challenging. I am someone who likes, if not total predictability, then at least the ability to plan for uncertainty and knowing my own capacity. Long Covid has been an ongoing trial in these respects. It’s taken a very long time for me to start identifying patterns in symptoms and associated rest quotients. There’s a certain mind game involved in remembering to calculate for potential half or whole days spent in bed away from the computer tomorrow or next week, on the days when I’m feeling comparatively well (when staying within my baseline).

I’ve also had to come to terms with the fact that if I don’t use some of my limited spoons for interesting non-thesis things, like catching up with friends or writing about other stuff purely because I want to, I might never have the motivation to finish my thesis at all. It’s just as well I get to write about something I care about in there, namely the perspectives of New Zealand journalists covering climate change. I am determined to finish it!

Writing and staying connected

Something I am proud of from this year has been putting more of my writing out into the world. I’m appreciative of the outlets who’ve published it, and it’s true all that stuff people say about not waiting for permission and just having a go. In thoroughly surprising news, Covid-19-related pieces featured prominently, but there were also stories on the environment and climate, media, voting accessibility and a few quite personal accounts of experiences shaped by being a disabled person. Here’s a page with a non-2020-specific round-up.

Another highlight was releasing a series of video interviews I had the privilege of doing with seven leaders in the disabled community who’ve been doing this mahi for a while, in an effort to record something of their stories and pass their wisdom down. Collaborating with an organisation called Imagine Better, we launched them in a series of live zoom conversations with the people featured and I found it a nourishing way to stay connected with people in the disability community in Aotearoa. Equally, mucking into some political organising has helped me keep a sense of purpose, and I’m thankful to my Green Party whānau for that. Finally, a shout-out to the friends who have offered me paid work this year, I appreciate you very very much.

How’s Norway?

I want to respond here to a natural question that most people I haven’t caught up with in a while ask, which is some version of “how is living in Norway going, what’s it like?” Well, it’s dark during the day in winter, I suppose. But the honest answer to that question is, while I’m very grateful to be able to find support and respite in this cosy and warm wooden house in the north of Norway, I have chosen to not even attempt to integrate within wider communities here with my limited bandwidth. For context, I currently can’t walk more than a few hundred metres without crashing out afterwards, so any physical trips into the city would be a big deal. Online organising is just not the same without prior relationships and without understanding the culture and context you are living in, as well as the language, which I haven’t learned. So that’s why so much of my life is still connected to Aotearoa. It’s keeping me grounded.

That said, I enjoy Mum and Dad’s updates on the extensive natural wildlife here, and I’ve certainly eaten my share of blueberries and raspberries they have picked. Despite the unrelenting squawking, we all got rather attached to a seagull couple who were nesting outside my window earlier in the year. In due course the expectant parents produced a baby who, I was assured, looked adorable. Unfortunately, the miniature seagull fell out of the nest, and off our roof, prematurely and something must have eaten it, as despite its parents’ best efforts it was not to be found. In time, they moved on and left a heavy silence in their wake.

Icing on the cake

My hands are in a bowl, along with a fat cylindrical lump of almond icing. I'm smiling. You can see that the bowl is on a desk, I am in my bedroom.
Crumbs and liquid goop successfully tamed

The other day, I was coming out of a couple days of crash, but I was keen to carry on my part in what’s become Christmas ritual in our family. Every year, Mum makes a Christmas cake, and I have the specific but satisfying job of turning a crumbly liquidy almond goop into a lump with enough structural integrity to ice a cake with. This time, I got my hands messy from my bedroom. I turned on Bing Crosby, our family’s go-to christmas carroler, and reveled in tradition. This year, it was more than a cake contribution; it was a reminder that, for all the ways I have felt powerless and sometimes pretty down about living with chronic illness, being able to partake in the simplest of rituals can be a whole new level of satisfying.

Is it safe to say ‘2021’?

I’m very hesitant to mention anything in the way of plans for 2021. If 2020 has taught us all anything, certainty is a fragile idea. That said, I’m excited to be able to say that, all going to plan, I’ll be moving to Brussels in April or May to intern with the European Network on Independent Living. ENIL is a large, very active, disabled-led advocacy organisation, and I would be working on some combo of policy, event planning and copy writing. As a class of 2020 disabled student living away from my home country, it means a whole lot to know I’ve been offered work in an area that I care deeply about for next year. I’ll sign off this rather haphazard update on that positive note, wishing you all as rejuvenating a holiday season as possible at this challenging time.

By Áine Kelly-Costello

Blind freelance writer/journalist and campaigner from aotearoa NZ.

2 comments

  1. Hello Aine! We really enjoy your postings. Maybe we’ll get to see you in Brussels next year. We’ve enjoyed not travelling but it will inevitably return (and we have quite a few Air Canada flight vouchers!)
    A big hug to your parents (and yourself) from me and Wendy.
    Have a great Christmas!

    Liked by 1 person

    1. Thanks so much Chris. Yes, Covid restrictions and plans permitting, I’d of course love a Brussels visit! I hope you and Wendy have a wonderful quiet Christmas, Mum and I were saying we thought it’s great that you’re still decorating and getting into the Christmas spirit even if you can’t be with family and friends.
      Áine xx

      Like

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