Say hello to my little friend

(or, maybe Hal has an answer)

I have come to the conclusion that I am either losing my mind or I am living a kind of lucid dream in which I am writing my own screenplay.

As much as I love the opportunity to tell a good story, this isn’t a plot I would choose to be the protagonist of… in fact were I watching this movie, I’d be the first one yelling at the screen as the sliding doors moments approached.

But for sure, as 2024 comes to a close, I’m on the edge of my couch wondering how in hell this story will resolve itself, lean into some tortured but inspirational Taylor Swift-esque tune and wrap the fuck up.

The jury is still out on whether this movie I’m trapped in is a dystopian fantasy, a goofy caper or a shemozzle that should stay firmly locked in my bottom drawer.

But hey, I’m a writer and the plot twists keep coming so it would be churlish to turn my back on it now.

…

The pandemic has made one thing exceptionally clear to me.

And that is that the gen pop have zero idea and even less inclination to learn about what it means to be truly medically atypical.

When my son was first identified as one who would not walk the world in a typical way, I was immensely surprised that the responsibility for his care came without a guidebook of any kind.

Doctors appointments, therapy sessions, hospital stays would come and go with a series of intense events all of which ended in no satisfying outcome.

Each time I would bowl in thinking ‘today is the day we will get some real intel’ only to exit the experience with a couple of literal or figurative band aids, an extra putative diagnosis or two and a gigantic hole in my bank account.

This process can’t help but change your character.

It’s like wandering ever further into a spooky forest, convinced there will be fairies behind the next tree who will either welcome you into their magical world or hand you a map to get out.

It feels both logical and increasingly terrifying but at the end of the day you have to keep on crunching your way through the trees.

And you become increasingly pissed off.

Because your child’s future kind of depends on whatever wisdom might lurk somewhere among the leaf litter, or under a rock or in the mind of some forest dweller that may or may not exist.

Staying on your feet takes a toll. It eats friendships, it eats intimate relationships, it devours cash and it requires a level of shit eating that would overwhelm an enthusiastic dung beetle.

It makes a girl, especially one like me who has all the enthusiasm but none of the skill for this shite, a little bit desperate.

And that’s the cold open of this genre bending movie.

Let me pitch the rest to you, with the hope I can come up with an ending that makes sense and means that maybe just maybe I could walk into a cinema and see it in the company people one day.

I can’t promise it will break box office records, but maybe it will gather eyeballs around what I think is pretty important content.

…

Act 1 begins with me, after years of this clueless adventuring facing the prospect of a global pandemic of a disease with a special interest in taking down the medically vulnerable.

I’m your protagonist.

Middle aged, a bit sweaty and already painfully aware of the need to turn yourself inside out like a vampire squid just to stay afloat.

Not entirely proud to have turned myself into a walking talking set of raw intestines but it works. Plus, it makes the fart gags come easily and who doesn’t love a fart gag?

While everyone was a bit freaked and hearteningly cautious in the first year or so, I was often the one who squeaked, ‘I don’t think this will end well…’ to those most dear or in close proximity.

Mostly people said not to worry, that ‘they’ (whoever they are) would work it out.

Having spend quite a bit of time with ‘them’ (medical folk) over the years, I was fairly cognizant that the process of gathering medical intelligence, never mind turning the tide of something mysterious and serious, was meticulous, slow as a wet week and only sporadically successful.

So I knew that expecting a worldwide holy shit medical crisis to sort itself stat was going to need a universe of magical fairies.

But I nodded, I smiled, I wore my mask a little tighter than most and I hoped for the best.

…

Now, there’s a little character quirk I need to add here.

Actually, it’s a big one in the narrative I now know as my 2020s screenplay.

I have a very conflicted relationship with vaccines.

Topline, I think they are a brilliant public health strategy.

Under that… it’s complex.

My son developed Transverse Myelitis after a round of childhood vaccines when he was very very young. It left his already shaky CNS thoroughly shook and set him on a path of cascading neurological disease that still has him captured two decades on.

While we will never know for sure which is the immunological chicken or egg, the medical consensus was that he was unlikely to tolerate further vaccines well and so began a life of adventures in isolation, reverse pressure rooms and idiosyncratic reactions to anything his immune system encountered.

Interestingly, once that happened some of my family members revealed a history of adverse reactions and non-responding and even my own post-vaccine adventures made a bit more genetic sense.

So… when the covid vaccine was promoted as the thing that would stop the pandemic, I was dubious but keen to do my part.

I took the vaccine, my son could not.

I hoped it would help, but I kept up the masking, the isolation, the rigorous testing to make sure I was keeping my son as safe as possible.

Here’s where two paradoxical things became true.

1. The vaccines did not stop transmission.

2. People really really thought they did

And then three other things joined the party.

1. Everyone stopped protecting themselves from contracting covid

2. Most people got covid, recovered and thought ‘meh, that wasn’t so bad…’

3. Some people got covid, didn’t recover and everyone else thought ‘meh, that didn’t happen to me so why worry?’

And I, the central character in my ever more solo story, thought… ‘I am fairly certain we should all be worrying.’

And so, the plot thickened… or thinned as the case may be.

…

Act 2 of this movie is (hopefully) the darkest one.

A previously vibrant-ish existence becomes ever more desperate.

Relationships crumble in the face of what seems to me like incredible insensitivity.

Seemingly normal people look me as straight in the face as a human can given the need for social distance and say, ‘I don’t care if my behaviour puts your son’s life at risk’ and I respond by cutting them out of my life.

Previously reliable social systems (I’m looking at you, healthcare) say, ‘We understand your concerns but we won’t be taking any measures to protect your son against a thing that might slam him into the canvas like Hulk Hogan at his last Wrestlemania.’

Workplaces say, ‘We are all back on deck and IF we can accommodate you working from home we will but really you need to suck it up like the rest of us now.’

It all seems a bit grim.

The one light on the increasingly dim horizon is friends.

Old friends who give a shit, incredible new friends in similar circumstances who reached out and joined the narrative in the safest way they could and massive online groups of people all around the world who were balancing on the same knife edge of vulnerable health and the need to somehow keep the home fires burning.

And the biggest shining light… some particular friends who went above and beyond by gifting my son and I a Pluslife so we could reliably test visitors and pretend for a short period that we aren’t the band playing on while the Titanic goes three rounds with an iceberg.

It’s an odd turning point in the storyline.

The best thing in one way and the worst in another, purely because safe interaction with people actually requires people and most of them are long gone in this story.

…

And so… as traditional storytelling demands, we move onto Act 3.

It’s demanding a resolution, right?

I do this shit for a living but I’m not going to lie, I’m scrabbling for inspiration.

So I turned to all of our creepy new friend AI, for some answers.

There’s always been one question in my battle-worn evidence focussed mind.

Why are people thinking that it’s OK to go on endless Tinder dates with covid?

I know I’m punchy, having watched my son get thwacked with unexpected outcomes from immune provocations but still… everything I’m reading seems pretty damned serious and most people are acting like covid is viral Elmo.

Every time I ask someone why they aren’t concerned, they get defensive and mutter something about having to live life, and feeling ‘fine’ despite a good half of them struggling with new onset mysterious health conditions but hey… we all run our own race, right?

So, I was keen to see what our virtual overlord would come up with to help me write a script ending for the ages.

I’ve copied and pasted (with edits for brevity) what I asked ChatGPT and what it gave me in return.

1. Can you give me peer reviewed evidence that Covid is not a serious disease?

The claim that COVID-19 is “not a serious disease” is nuanced and heavily dependent on context, including the population being discussed (e.g., age, pre-existing health conditions, and vaccination status). Peer-reviewed evidence consistently shows that COVID-19 can range from asymptomatic to fatal, depending on these factors.

While evidence supports that COVID-19 may not be “serious” for certain low-risk groups, it can still cause severe illness, long-term complications, or death in others.

Broad claims that COVID-19 is “not a serious disease” are therefore not consistent with the full body of peer-reviewed evidence.

What are the public health implications of not protecting ourselves from covid 19?

The public health implications of not protecting ourselves from COVID-19 are significant and multifaceted, affecting individuals, healthcare systems, and broader societal structures.

Here are key areas of concern:

Severe Disease Burden: Without widespread protective measures, COVID-19 can lead to severe outcomes, particularly in high-risk populations such as older adults, the immunocompromised, and those with chronic health conditions

Long COVID: Many individuals, including those with mild initial symptoms, develop long-term complications such as fatigue, respiratory issues, and neurological symptoms. This increases the burden of chronic disease in populations

The failure to protect against COVID-19 undermines public trust in health systems and prolongs societal recovery, making future public health crises harder to manage

Is there any hope for medically vulnerable people if Covid is not contained?

There is hope for medically vulnerable people, even if COVID-19 is not entirely contained, but it requires a sustained focus on equitable public health strategies, medical innovation, and societal support systems.

The future for medically vulnerable individuals in a world where COVID-19 remains uncontrolled presents significant challenges, but there are ways to mitigate risks and improve outcomes. Without robust containment, vulnerable populations—such as those with chronic illnesses, disabilities, or weakened immune systems—face increased exposure, more severe health consequences, and limited access to necessary healthcare services. This creates a heightened burden on public health systems and may exacerbate existing inequalities.

While an uncontrolled pandemic poses significant risks, sustained investment in inclusive public health measures and systemic equity improvements can offer medically vulnerable populations a more secure future. Collaboration between governments, NGOs, and communities will be key to achieving this balance.

Cool. Thanks Hal. I appreciate you.

The end of this story is people nutting the fuck up and working together.

Cool, cool. I’ll get working on that then.

…

This story needs an ending, and it can’t be one that involves me living in my car in a McDonald’s carpark so we can steal the wi-fi so my son can watch YouTube.

The plot twist absolutely has to involve the rest of the world actually engaging in the reality that it’s not smart to consciously undermine your own health, and by extension condemn less robust folk to a life as a bit player.

At the risk of mixing my futuristic nightmare metaphors, I’ll finish with a sentiment from the someone who never shied from the dramatic in his expression - the thin white duke.

Planet Earth may not be as blue as it was in 1969… but in 2025 (AKA the epilogue of this lark of cinematic proportions), I’ve got little choice but to step through the door.

Masked, tested and hopeful that leaving my tin roofed can/house has the possibility of ending well.

Preferably with the respect and understanding of the rest of the world so I (and all the others currently hiding from Elmo) can start living our sequel.

…

Ground Control to Major Tom

Ground Control to Major Tom

Take your protein pills and put your helmet on

Ground Control to Major Tom (ten, nine, eight, seven, six)

Commencing countdown, engines on (five, four, three, two)

Check ignition and may God's love be with you (one, lift off)

This is Ground Control to Major Tom

You've really made the grade

And the papers want to know whose shirts you wear

Now it's time to leave the capsule if you dare

This is Major Tom to Ground Control

I'm stepping through the door

And I'm floating in a most peculiar way

And the stars look very different today

For here

Am I sitting in a tin can

Far above the world

Planet Earth is blue

And there's nothing I can do

Though I'm past one hundred thousand miles

I'm feeling very still

And I think my spaceship knows which way to go

Tell my wife I love her very much she knows

Ground Control to Major Tom

Your circuit's dead, there's something wrong

Can you hear me, Major Tom?

Can you hear me, Major Tom?

Can you hear me, Major Tom? Can you-

Here am I floating 'round my tin can

Far above the moon

Planet Earth is blue

And there's nothing I can do

Songwriters: David Bowie

Space Oddity lyrics © Universal Music Publishing Group