Over the many years I have been involved in start-up activities, I’ve often referred to how the process to launch is a ‘labour of love’, which refers to the tenacity, willpower, perseverance and resilience required to get something off the ground.

Innovation is a word thrown casually around as though it’s super easy to achieve. We’ve also become accustomed to so much new stuff popping up all of the time, that we’re sheltered from the realities of what it takes to make it happen in the first place.  

Piha beach by Jenene Crossan
<em>Piha Beach Photo Jenene Crossan<em>

It is always hard to do, it always takes longer than you hoped and it inevitably costs more than you can ever afford. There is a reason they’re called Passion Projects – it requires a level of commitment quite unlike anything you’d see in the traditional workplace. 

Challenge and commitment

In this case, with this project, we had an extra challenge again; every single person involved in the project also has Kowheori Roa | Long Covid. Never before have so many deadlines been missed! Meetings were delayed, sometimes disjointed, usually missing a participant or two, conservative estimates on time were well undercooked and willing participants had many reality checks on their energy levels and the mismatch against their enthusiasm. 

Thankfully, that – enthusiasm – they had in spades. From day one, the broader Long Covid community stuck their hands up as far as they could manage, eagerly seeking involvement and keen to engage in our important kaupapa. We were determined to ensure everyone was fairly paid to be involved (an exercise in making a thin budget go far) and enabled to do it at their own pace. We added plenty of encouragement, time extensions and understanding to rescheduling as they needed. We ran over time by some two three months and that’s okay.  Better late than never.

When, dear reader, you find yourself navigating through the various sections, please keep this reality in mind. Think about what it took for them to write those words, to share their stories, to dredge up painfully fresh (and for many, still active) memories and trauma. They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from. They asked their community, they sought input, they found great references and they quite literally sweated over it. By the end, they were very spent.

But I know what else they’ll be right now – proud. And so they should be: their collective grit has made something useful, something heartfelt, something unique. In a world of content and a sea of misinformation, theirs is grounded in lived experience, coupled with expert fact-checking and cross-referencing. The unfortunate among us who find themselves following in our footsteps, may find their paths just a smidgen easier because of it. This restoration of mana is crucial for everyone and shouldn’t be underestimated in its importance.

There have been many highlights in this project, which I choose to focus on, rather than the fear that comes with launching something that’s talking about a subject that everyone would rather pretend doesn’t exist any more.

There have been many highlights in this project, which I choose to focus on, rather than the fear that comes with launching something that’s talking about a subject that everyone would rather pretend doesn’t exist any more. Trust me when I say that I have had the wobbles on this, again and again, and I have had to remind myself that I am here for one good reason: to help those who need it. When we know better, we do better and that includes when we feel better. 

As Maya Angelou famously said, “When you learn, teach, when you get, give.” That sentiment is what bonds my Long Covid Support Aotearoa co-founder Freya and I, when little else likely would – we are not of the same age, life stage or possibly even interests. But we care deeply about how we can empower others, to enhance mana and be part of something that makes a positive impact in a world that often feels like it is falling apart at the seams. Getting to know Freya and all of the other exceptional administrators who give up their time and patiently wade through information and content to keep our members safe, has been a lesson in empathy and humility. They are wonderful human beings.

A note about the art

You may notice the illustrations across the site. A simple idea generated in a short meeting about how we can capture the essence of a symptom and how it relates to an individual, turned into launching a competition (within the support group) where people could submit their interpretive artworks. I put up my own hastily drawn scribble as an example and a wee cash prize to try and coax people to join in.

We hoped to get a few dozen (and then offer a payment for the ‘art’ too). Our enthusiasm wasn’t quite matched and we ended up with only one entry. Just one! Feelings of dejection made way for jubilation when we realised just how ironic it was that no-one felt up for it, but the person who did was extremely talented. All it takes is one. Tracey’s hand drawings are beautiful, poignant, moving and honest. She has taken words and transformed them into relatable, considered pieces that do what art does best – make one think.

The voices you’ll hear

Finally, you’ll note that names are not attributed on the first-person articles and we purposefully took this stance on the site. Both Freya and I found ourselves ‘faces’ of the pandemic in Aotearoa, during what will forever be known as the weirdest times in our lives. There is nothing quite like that role, one that you didn’t ask for or seek, but find yourself thrust into and then realising just how important it is for people to see faces, to connect in scary times.  

However, this sadly made way for a loud undercurrent of haters, trolls and other negative forces who became slicker and more sinister in their ways to spread their agendas and use people like us as their social-media political punching bags. I’d love to say that this has stopped now or that it only exists in the shadows, but it’s simply not true – it lingers. Those who through the pandemic found themselves ‘seeking alternative pathways’ have moved into new outlets, and they have turned up in our social media community pages. It was only a few months ago that I had to seek police consultation on how to handle someone in my own village, determined to erroneously believe that I was a paid informant of a vaccine agenda. I typically don’t engage, but I found that one particularly hard to take.

With safety in mind, we made a conscious decision to do all we could to protect our community who deserve our tautoko | support, compassion and empathy, not a pile-on of cynicism. I know the media love a face – it gives them photography and headlines, content that people can relate to – but without any way to protect individuals from the bad actors, as a custodian of this kaupapa, I back that we provide them with sanctuary as our number-one priority.

This site is evergreen: it will evolve as the data does, we’ll feed back when we have insights to share, we will add more depth and breadth to the content. There will be layers added over time, and new ways to provide smarter, more useful resources will manifest. We’ll invite our supporters to come with us, every step of the way.  

Together, we can make this journey less scary and help people feel less alone. 

Jenene Crossan, co-founder, LCSA