Virtue signalling with Celery

It's my new respite 🧘🏽‍♀️

I was walking home from the supermarket, swinging my reusable bag so that cars passing by might see my luxurious head of celery. You see, I recently bought a juicer from the Briscoes sale, and I wanted to feel virtuous.

I feel old, fat and exhausted but I desperately want the world to see me as a green juice goddess.

Life has changed so much since March 18th. That’s the day Whaikaha changed the rules and made everything more difficult for disabled people and carers. No more funding for self-care, no more dignity in choosing the supports that best suit your needs.

Our needs have not changed, but our ability to access support has. It’s burdensome, and the load feels heavier by the day. But we keep going, because we have no choice but to do so. I think about my own ability to access support, as a carer. I’m acutely aware of other carers around me who are coping in good, and some not so good ways these days. I won’t sugar coat it, it’s hard.

Reimagining ‘respite’

I had never thought about the word ‘respite’ until recently - it’s just what we called the approved government funding for an occasional break. But its so much more:

The Oxford Dictionary defines ‘respite’ as “a short period of rest or relief from something difficult or unpleasant.” It gives an example of displaced people finding respite in a refugee camp. Of course I think of Gaza, those poor souls with no safe place to sleep, live or pray. They are under attack constantly, even in their place of ‘respite.’

I hate the idea of my 15 year old daughter thinking of herself as an enemy force I am in need of protecting from. That’s not how it is. We need to do better, and choice of language is a great start in influencing positive change in the world (unless you’re Winston Peters this week).

I prefer this reimagining of respite by Jade Farrar, a member of the national Enabling Good Lives leadership group. In an article on the EGL website, Jade calls for respite funding to be “reframed through a wellbeing and resilience lens” in accordance with EGL principles, and the concept of family wellbeing (whānau ora).

“Family wellbeing is crucial for the survival, long term sustainability and resilience of many disabled people and their families. The current language is not indicative of this intent, and young families who are new to care giving are not always well educated or informed about the importance of wellbeing and resilience for sustainable caregiving in the long term.” - Jade Farrar, National EGL Leadership Group

The article also points out how respite at its core is a deficit based concept. If instead the language and intent of ‘respite’ reflected a person and whānau centred funding model, rather than an ambulance at the bottom of a cliff - perhaps a ‘wellbeing budget’ would better suit the intention of the funding.

Recent restrictions aside, a Wellbeing Budget that funded items and experiences that created a more sustainable level of support would promote resilience in carers, in fact the whole whānau. It would give them the tools they need to navigate both the accessible and more difficult parts of this journey, and empower them to be a good ally to their disabled loved one.

My new respite

Since March 18th, I can no longer pay for all of the things that made life a bit easier for my whānau, with the disability funding we were assessed and approved on an annual basis. I started a part time job, which has covered some of the costs, but it has also made the balance of a wife/parent/carer/friend/ally etc that bit harder. I’ve had to be creative in where I source experiences to boost my wellbeing, to give me a break or respite, if you will.

Tetris style games appeal to me, but the ads on the apps just make me irate, rather than zen. My phone is a convenient distraction, but often a source of more stress when I think I need to be more ‘present.’ I can’t focus on podcasts, the only one I listen to daily I quickly switch off when the young presenters talk about gaming, drake-kendrick rap battles or conspiracy theories, so that doesn’t soothe me either.

Go for a walk they say! And I say f**k off in response.

In fact I’m always out walking, but I’m never really going anywhere. I walk to the supermarket. I walk the kids to the bus stop in the morning. I walk the kids home in the afternoon. I aimlessly walk up and down shop aisles. Someone will walk past, or toot their car horn as they drive past and I barely notice them. My inner monologue is loud and constant, listing things I need to remember to do during the day like Arya Stark listing her mortal enemies on an episode of Game of Thrones.

Pick up meds. Charge iPads. Email school. Follow up referral. Online grocery shop….

Balance has always been my problem. If I matched my constant walking with healthy food, I reckon I’d be slim AF. But I eat my feelings. Anxiety with a side serving of trauma and a sprinkling of irrational fear. Morning lunch and dinner, seven days a week. Yum yum yum.

A friend and I are chatting about our same-but-different parenting stories, and laughing at how we missed the memo about chronic stress being a reason for some parents forgetting to eat. She’s wearing her bike shorts today to jumpstart her fitness journey because she feels like shit too. I tell her about my juicer, and we decide to support each other

“No one’s going to save us but ourselves” I type.

Oof, that one landed as soon as I hit send. It hurts, because it’s true. March 18th has driven home the fact that our own government doesn't value carers or their wellbeing. Places that are supposed to support disabled people and carers are fighting each other for ever-decreasing pots of funding, like its the Hunger Games. We really are on our own now. So we have to support each other, it’s the only way through this.

I joke with my friend that I might try claiming Ozempic for weight loss with our individual funding. Because inappropriate humour is my coping mechanism these days. My love language is mental health memes and my favourite laugh/cry emoji is actually a representation of my split funny ha ha/stress crying persona right now.

And re: Ozempic - Unless you can fidget spin for fitness, I think weight loss is outside the Whaikaha purchasing guidelines [insert crying laughing emoji here]

Where’s your happy place, where you feel happy and calm? Here’s mine:

I find myself resting on this particular public bench more lately. It’s been a hell of a winter, isolating with covid, flu and other illnesses. My ‘me time’ is a walk to the supermarket when my husband gets home from work. I don’t want to go, we don’t really need anything, but I make myself - to stretch my legs, breathe deeply (exhaust fumes on the main road) and focus on something else. It’s not much but 9 times out of 10 it does the trick.

I self scan my groceries because I don’t like small talk with check out operators. Ironically I mutter at the machine to shut up when it rushes me to pack my random purchase of tortillas and celery.

I get to a certain point on the journey home and think “wait, I’m not ready to go back yet,” and I sit on this bench. It’s hardly a picturesque spot - I’m facing the diagnostics clinic where I go to get my bloods done, and be told my cholesterol is a bit high. At the back of me is a carpark. To the left of me is the main road, with the gym (ironic) across the way. To my right is a concrete path that follows a stream all the way to the beach. In the distance I can see Kāpiti Island, the outline of its summit always looks like a sleeping giant to me.

The wooden bench is a bit wet, not enough winter sunshine to dry it out fully from the overnight frost. The council rubbish bin next to it is overflowing, but thankfully not stinky. Some energy drink cans are protruding out the sides. I used to drink energy drinks, back when I had energy.

I look down at my fat thighs and sigh. Then I turn to my glorious celery in my environmentally conscious jute reusable bag and feel virtuous. I close my eyes and think about the amazing juice I’m going to make and fuel my body with. I picture myself looking trim, feeling strong and taking a triumphant swig on my juice. What an odd sort of meditation but I’ll take it! This is as close to ‘me time’ as I’ll get. And thats OK. Its a fucked up sort of break, but maybe that is the new respite.

Bench marks

Between my seat and the diagnostic clinic theres another bench. This one has flower beds with white pebbles in it, and a low schist and cement wall separating us. Theres a plaque on that seat, in memory of a staff member who has passed. This sort of memorial always appeals to me, a nice place to sit and reminisce, rather than a headstone you have to stand and look at. ‘In memory of blah blah, who loved to sit here’ always seems more thoughtful, and links back to my last article on the energy we imprint on places and objects in our lives.

When you’re at a crossroads and doing a stocktake of your own health and wellbeing, it’s inevitable you think about your own mortality, who you have imprinted your energy upon, and your legacy. This bench is doing things to me, in a good way. I think about my legacy as a brass plaque, that reads ‘She drank the juice, and saved herself.’

Life at the moment is an opera cake of stress - layer upon layer of anxiety and exhaustion. Daylight saving has meant that it's often dusk by the time I get home, and I happened to snap this photo this week of my beloved bench, which I think is a nice way to end this story today:

…and look, someone has emptied the bins, so its not all bad 😂😂😂