We Are Here

(no matter how hard you try look away)

I’ve written a lot over the last year or so about the lack of access to an outer life that covid has wrought.

It really does suck to not be able to go to restaurants or gigs or theatre safely.

It really is terrifying to not be able to contemplate accessing health care without taking a huge risk.

I worry about my eyesight, my teeth, my lack of overall maintenance.

I wonder if any of these things will ever be safe for my medically vulnerable, disabled adult son.

And obviously, the crunch on the ability to safely earn a living is crushing. Truly steamroller heading directly at you level crushing.

Literally everything is at risk.

But there’s something else.

Something that is, if possible, even worse that losing practical control of life in a broad sense.

And that’s invisibility.

…

I am someone who thought nothing of taking the road less travelled. In my journey to middle age, I have more times than I’d like to acknowledge, upped sticks and broke new ground in pursuit of a new and better existence.

It was rarely easy, but the reward was obvious.

I lived longer and prospered in ways I would not have encountered without exercising what I saw as courage and resilience.

But for the first time in my life, I find myself living in profoundly foreign territory in 2024.

Completely cut off from real connection, unable to join in with the joie de vivre that I used to seek like clean water.

I’m sitting on my own baggage wishing I could go back to a time when my own life felt like home.

And the crazy thing is, it’s all because people - individually and en masse, have chosen to write my reality out of the big book of what is and should be important.

It’s quite the thing.

…

I feel like it was pretty generally accepted pre-covid that if we were aware that someone was actively and unjustly excluded from even one aspect of their life, we should stamp that shit out very quickly.

If anyone at any time decided to target the safety of you or someone you love, we were fairly well empowered as humans to take steps to not only overcome that threat, but to seek some kind of justice.

But this is the opposite.

In 2024, the vast majority have chosen an approach to life that I cannot choose.

To be fair the way most people are living their living with covid life is not something I think is even remotely sensible but that’s a whole other discussion that has long run out of puff.

But that aside, I cannot live a life of infection bingo for the simple fact that I am the primary carer for someone for whom a covid infection has a high chance of inflicting some top shelf catastrophe.

Even if I could avoid passing my infection onto him (it would be almost impossible, but I’ll play along), I do not have the capacity to isolate away from my son for any length of time. I do not have the resources to be sick for any length of time. And for damn sure I cannot take the risk of losing any long term functioning capacity as a result of an infection.

Caring for someone who lives with disability and chronic illness means you cannot power down or die. Or at the very least, you have to actively put it off for a long time.

So covid and I must remain unacquainted.

And that means being essentially unacquainted with anyone who might be carrying it.

Colleagues, friends, family, lovers, randos in a post office queue.

Unless they are outside at a distance or masked effectively in a well-ventilated room, there are no people.

At least, not many people who are willing to make an effort to make life safe for someone who is not them.

…

Most have simply retreated.

They just faded.

If they did initiate a regretful conversation (most didn’t), the hypothesis was ‘I have to live my life’.

It’s a premise I 100% endorse and it’s hard to argue with.

Except the reality is, that everyone living their life means that I cannot live mine.

And for some reason, that doesn’t come into the conversation. At all.

No apologies. No regrets. Just a largely unspoken understanding that other people’s lives are more important than mine, and definitely way more important than the life of my son.

I would be a woman made of granite to not be hurt by that.

And yet there is no place to put that hurt.

Nowhere beyond my psychologist appointments where it can be processed.

That is segregation.

Active, mandated exclusion of a sector of the population on the basis of an inherent personal quality over which they have no control.

…

When this hellscape began, I had a functioning career, a support network for my son and an intimate relationship that ran rings around any relationship I had before.

As someone who was a decade and a half into understanding that my life would be forever mandated by the needs of a vulnerable human being being, I was pretty chuffed about the fact I had managed to build as close to a 360 degree life structure as I could imagine.

It wasn’t always easy, but it definitely went a fair way to satisfying my financial, logistical and emotional needs. More importantly, existing not just for me and my needs, but with a function among others made me visible. I had a role in this play we call life.

When covid hit, and social  structures were put in place to monitor and protect ourselves from disease transmission, my life shifted (like everyone’s) but it could still function.

That’s because the measures by which I could keep my child (and myself by extension) safe were explicit and accessible. Also because those measures explicitly endorsed the need to stay safe. We tested easily, we had data on case numbers, our public spaces were populated with explicit messages that covid was to be avoided.

When the decision was made to abandon mitigations and testing, on the putative notion that herd immunity to covid was on its way, my 360 life started to collapse by degrees.

I felt it coming.

I spoke about it happening.

And those closest to me shifted from being allies in safety to ignoring the intel.

This meant a few specific things.

Peoples’ decisions around their own personal risk profile obviously became their own concern. As discombobulating as those decisions were to me, they ceased to be my concern. They were simply the first reminder that people truly do not understand the real-life impact of potentially disabling disease.

And to be fair, the very real (and rapidly growing) information that covid is very much a potentially disabling disease was swept rapidly under the public health information carpet under the cover of the band striking up loudly.

Who’s going to make an effort to go looking for the science when there’s a party to return to?

…

But science is something I had learned to know well as a parent.

I may write fart jokes for a living but I read peer reviewed studies for very vital shits and giggles.

And there is absolutely nothing about covid science that makes me laugh.

The more I tried to amplify that science, the more friends and family returned to 2019 life with gay abandon and retreated progressively from my son and my life.

No harm, no foul in their minds.

A first strike to the heart in mine.

The people who actively spread covid from their own circle (aka were covid positive or had a household member who was positive and still popped to the shops unprotected) were pushed away by me.

It was painful, an unpleasant conversation to have but nothing is more important to me than drawing that particular line in the sand.

It was surreal to say to someone you love that the act of putting your son’s life at risk makes them an unsafe participant in your life. That’s not a concept I ever thought I’d have to articulate.

It was even more surreal to get responses that implied that I was wrong in expressing the importance of keeping your own child alive and functioning.

But there we are as people.

Most friends just disappeared into the ether of group chats planning parties, social media holiday logs and face to face work places. It’s intellectually understandable, and emotionally like being poked with an invisible shit covered stick.

The altogether worst part of this process of de-peopling was losing the person closest to me. The person I thought was MY person. The last remaining unconditionally safe pair of hands.

Those lovely hands disappeared by degrees, in lock step with the abandonment of publicly mandated mitigations.

What was an open, respectful embrace of each others lives, one containing some pretty unprecedented extremes needed to protect a vulnerable loved one morphed into two separate lives.

One lived out in the world, only minimally acknowledging the ongoing covid challenge.

One lived exclusively in a mitigated bubble, buffered against a very real continuing reality.

I started to feel like a wartime wife. Sitting alone waiting for contact from far away. Carrying a can that everyone knew existed but everyone had decided to ignore. Expected to keep calm and carry on stoically and without anyone letting the doom cat out of the bag.  

I was drowning. Not so much in fear (as I was well versed in what needed to be done to keep my son safe, by that point) but under the weight of need for one simple thing.

Acknowledgment.

The practicalities of punching away the risk of potentially deadly disease are many and weighty.

And while I understand the burden of strapping on the gloves permanently is mine, given it’s my job to protect my son, the weight of the burden is released somewhat by acknowledgment.

⁃            Are you OK?

⁃            Here’s a token of my understanding that you are drowning.

⁃            Let me help you in the fight to make things better.

In any battle (and this is an undeniably epic battle), those under siege need allies.

And unfortunately for those emotionally linked to the besieged, alliance is a basic tenet of that link.

I didn’t expect to be joined in my bunker, but I did need the reassurance that I was, in fact bunkered and that bunkering is as much fun as being forced to snack on your own eyeballs.

I have lost many people in this shit show, but losing my safe hands (which in retrospect were not the kid gloves I thought they were) was by far the hardest.

Those hands had been a key component of making what was a tough life journey in pre-covid terms into a manageable feast. We had shared a great deal that lightened each other’s loads. We had pushed each other past our own past challenges into a place that made us both very happy.

Realising that my (unprecedentedly unique for sure) circumstances had sucked the oxygen out of the connection between us was the worst.

It was also the moment I realised that a place the world was no longer mine to claim.

I had become invisible.

When your person stares blankly at your trauma, or doesn’t look at it at all, you know for certain that your road to hoe is Schmigadoon to literally everyone else.

Lucky I’m fond of daggy musicals…

…

This past month, two people I know died.

Both in hospital.

Both lived with pre-existing serious medical conditions that made them medically vulnerable.

Both contracted covid in hospital and died soon thereafter.

And no-one medical or familial batted an eyelid. Because those people were weak and vulnerable already.

…

As someone who is duty bound to protect a vulnerable human, I have to accept we live in a dystopia where we actually don’t exist.

We must protect ourselves but every level of protection has been switched off.

-       We can’t work safely.

-       We can’t access healthcare safely.

-       We can’t have people close without risk.

And unless this dystopia grows magical wings, the natural consequence is unthinkably grim.

-       Homelessness is a real threat.

-       Loneliness is a weight that can only be lifted in temporary pixie sized increments.

-       There is no way to build a future without welcoming increasing doses of the very risk that you upended your life to avoid.

And the risk is not gone, not lessened, not even giving us the slightest hint of dissipating.

Even though people are pretending it has poofed away like a slain video game villain.

If you’ve made it this far and you can fit more words in your head, read this.

It’s a similar story to mine with added data. It’s the reality of where we are now.

It’s acknowledgment.

…

We are walking blindly into uncharted waters in terms of health and social impacts of covid.

Take it from me that swimming in these waters is not only uncomfortable, it becomes more impossible by visceral degrees day by day. And it’s made even more impossible by the fact we are drowning alone.

But we aren’t invisible.

We are here.

Take it away, Mr Sondheim.

…

Good times and bum times,

I've seen them all and, my dear,

I'm still here.

Plush velvet sometimes,

Sometimes just pretzels and beer,

But I'm here.

I've stuffed the dailies

In my shoes.

Strummed ukuleles,

Sung the blues,

Seen all my dreams disappear,

But I'm here.

I've slept in shanties,

Guest of the W.P.A.,

But I'm here.

Danced in my scanties,

Three bucks a night was the pay,

But I'm here.

I've stood on bread lines

With the best,

Watched while the headlines

Did the rest.

In the Depression was I depressed?

Nowhere near.

I met a big financier

And I'm here.

I've been through Gandhi,

Windsor and Wally's affair,

And I'm here.

Amos 'n' Andy,

Mah-jongg and platinum hair,

And I'm here.

I got through Abie's

Irish Rose,

Five Dionne babies,

Major Bowes,

Had heebie-jeebies

For Beebe's

Bathysphere.

I lived through Brenda Frazier

And I'm here.

I've gotten through Herbert and J. Edgar Hoover,

Gee, that was fun and a half.

When you've been through Herbert and J. Edgar Hoover,

Anything else is a laugh.

I've been through Reno.

I've been through Beverly Hills,

And I'm here.

Reefers and vino,

Rest cures, religion and pills,

And I'm here

Been called a pinko

Commie tool,

Got through it stinko

By my pool.

I should have gone to an acting school.

That seems clear,

Still, someone said, "She's sincere,"

So I'm here.

Black sable one day.

Next day it goes into hock,

But I'm here.

Top billing Monday,

Tuesday you're touring in stock,

But I'm here.

First you're another

Sloe-eyed vamp,

Then someone's mother,

Then you're camp.

Then you career from career

To career.

I'm almost through my memoirs.

And I'm here.

I've gotten through "Hey, lady, aren't you whoozis?

Wow! What a looker you were."

Or, better yet, "Sorry, I thought you were whoozis.

Whatever happened to her?"

Good times and bum times,

I've seen 'em all and, my dear,

I'm still here.

Flush velvet sometimes,

Sometimes just pretzels and beer,

But I'm here.

I've run the gamut.

A to Z.

Three cheers and dammit,

C'est la vie.

I got through all of last year

And I'm here.

Lord knows, at least I was there,

And I'm here!

Look who's here!

I'm still here!

Music & lyrics by Stephen Sondheim