Matters of the Heart

(or what’s left of it)

I remember one moment from 2020 very clearly.

It was early morning, on a weekend.

We were lying in bed, listening to the news. Sipping coffee, recovering from the night before.  

And obvs, the news was talking about the virus that was leaking out of China, wreaking a level of havoc we hadn’t encountered much before.

Being me (a cultural catastrophiser and long time parent of someone whose immune system was prone to mythic level party tricks), I said six fateful words.

‘This is going to be bad.’

I got the response I usually get to my Bruce Willis movie level plot predictions.

‘We will be fine.’

I quite liked this response because I genuinely want to believe it.

I hated this response because (as an Irish born anxiety aficionado) I am well aware that it is, more often than not, a giant crock of sugar and glitter covered shite.

Flash forward to 2024 and we all know how it’s going.

…

I do not share this moment to illustrate my status as some kind of modern day Nostradamus.

It illustrates something way more important than my genetic ability to pick incoming crisis with dead eye accuracy.

In this moment, I inadvertently set the scene for what was to come.

The exact position the clinically vulnerable would find themselves written into.

Minus the stench of stale alcohol and twisted sheets.

…

I, myself am not clinically vulnerable.

My son is the one for whom the world is a hungry hippo, snapping away at his ability to be a happy little white plastic ball among all the other little white plastic balls.

He’s the one who gets hit with something that most others can take as a routine hit, and shatters like Humpty Dumpty.

Every time a loud sound happened around him, in utero, he startled so violently that other people laughed at my shirt movements.

When he was at pre-school (a story unto itself, but one for another time) a round of childhood vaccines tipped him into a condition called Transverse Myelitis (his immune system decided the vaccine was an enemy and proceeded to strip the myelin around his central nervous system).

As he headed into puberty, a rare epileptic encephalopathy turned his sleeping hours into a rollercoaster of capacity stripping, intractable, tonic clonic seizures.

And all along the way, normal childhood infections took him out of circulation for weeks at a time, sometimes halting his development as an added bonus.

He took these hits with charm and a kind of innate resilience that I can only put down to his Irish genetics.

And I parented, as best I could, saying one day this will get better somehow and silently thinking ‘all signs point to shiiiiiiiit’.

…

So… it isn’t exactly surprising that 2020 did not feel good to me.

I clung to the ‘it will be fine’ messages like a solo free diver might hug a buoy in shark infested waters.

In the years preceding, people had been pretty good to me, and my son by extension.

I had a very nice relationship that had been built on both of our post-divorce need for no complication but honest connection.

I had a career that I loved full of people who moved all the goalposts to accommodate having a high needs child.

And I knew interaction with the medical fraternity at a cellular level.

Like many others in my position, my parenting journey looked from the outside like any other.

Make child, love child, get through the day as best you can and know a glass of wine at the end of the day will probably wipe away the adrenalin.

On the inside, the reality was different. Very, very different.

Every single step along the way had a level of fight that is hard to articulate for the uninitiated.

And that’s mostly because I barely understood what was going on.

Why did my kid get sick so much, and in such a peculiar manner? Endless doctors couldn’t work it out, endless googling (once googling was a thing) couldn’t find solid answers.

Family members, friends and random non-medical professionals in his life didn’t really get it.

But the silver lining was, we had a team. We had a place to fall.

With his ever growing medical team, we were on some kind of journey to if not understanding, then at least managing whatever life change was coming down the pike.

Doctors, hospitals, therapists… it wasn’t sports choices, field trips and sleepovers but it kinda played the same role.

In these settings we found a way to measure childhood milestones, we met people like us, we built long term relationships with trusted adults, we got a chance to breathe out and hand the wheel to someone else for a hot minute.

It wasn’t just regular healthcare delivery (though that was a vital part of it), it was community.

It never felt exactly typical, but it definitely ensured we could function and stay safe.

Until it didn’t.

Because covid.

…

On the verge of my son’s 21^st birthday, we still don’t have clear answers about his health.

But the difference between 2019 no answers and 2024 no answers is profound.  

I have banged on a lot here about what losing access to safe healthcare means to people like us.

On a practical level, it adds a level of fear that people living in a nominally progressive, western democracy should not feel.

The risk of acquiring a covid infection in a healthcare setting is high. Too high for us to take.

So, unless it is a dead set emergency, we do not attend.

When we do, we are masked, mitigated and labelled ‘difficult’ because we do not care to share the air with people potentially transmitting covid.

Even if my son was not someone who was in need of an exceptional level of medical care (NB. he is), this is not good.

Healthcare is important.

It is heartbreaking and terrifying to be without this vital safety net.

…

2024 life is like an endless break up.

You know that weird phase post relationship ending when you hear a song, or drive past a pub and think, ‘oh man we really did have some good times...’?

Well, it’s like that except the song is your life and the pub is your life and every other memory is your life too.

And none of it is yours anymore.

To be fair, it’s not like a break up.

It is a break up.

Without a doubt, covid was also the cause of my break up with the person who assured me we would be fine and then failed to make any effort to indeed ensure I was fine.

It’s the cause of the break up with multiple friends who chose to continue their unmasked social engagements despite having a covid positive person at home and no clear idea of whether they themselves were covid positive.

It’s caused the loss of every kind of person to person interaction beyond those that can happen outside, at a distance or as masked and mitigated as a human can be.

It’s the cause of no hugs, no physical intimacy and no real hope of anything resembling what used to be a perfectly normal and very enjoyable part of adult life.

It’s the cause, possibly more importantly, of my son facing the vast majority of his life unable to interact with the world safely, at any level.

For the clinically vulnerable, covid has meant breaking up with life.

Lest covid cause the biggest break up of all.

…

Possibly, the biggest challenge in of all of this is an almost complete lack of acknowledgement of the impact of any of this on the hearts of those who have no choice but to live a covid zero life.

Unlike other phases of life when things have turned a bit shit, this one has no foreseeable healing and recovery period.

When I say this out loud to people who have decided a third, fourth or fifteenth covid infection is a fair price to pay, they say ‘you just don’t know that for sure…’ as though I have made a perverse personal choice to isolate myself from absolutely everything that makes life liveable.

Like one day, I will come to my senses and stop this nonsense.

And as much as I wish that was a choice I could make by slapping myself with a wet fish and diving back into pub life… the fishes can sleep easy because it just isn’t.

Unless I am willing to put pub life ahead of my son’s life.

And/or risk my own ongoing health as a side bonus.

…

So, what is the solution?

It’s actually pretty simple.

Not easy but simple.

What clinically vulnerable people and their families need is for anyone in their inner circle to not be carrying covid. In exactly the same way as we needed you to not be wilfully carrying any other pathogen into our lives pre-covid.

What we need is for others to be proactive in being safe.

And for that, we need two things.

1.        a big technological shift to expedite reliable, expedient, home testing.

Not crappy rapid tests that either don’t work, don’t work when you need them to work or rely on variables around user error, variants and viral loads.

And perhaps more of a challenge, we need people to be willing to use that technology.

Individuals, groups… whoever.

Which leads me to the second thing we need.

2.        a massive shift in perception around covid.

We need people to accept that covid is still a threat to health.

No more denial. No more talk of ‘post covid’ life. No more sepia toned throwbacks of how rotten it was when covid was around, or joyful hoo haa about covid being gone, especially in the media.

It’s not gone. It’s not wreaking less havoc among the vulnerable.

And the thing that makes it milder (vaccination) has been progressively ignored by a  fair proportion of the population.

-              We need clean air in indoor spaces.

-              We need masks in indoor spaces, especially in healthcare settings.

-              We need to normalise the avoidance of covid infection.

And by doing that, we would also normalise normality in the lives of the clinically vulnerable.

You cannot tell me that is too much.

Pre-2020, no one looked me in the face and said, ‘Oh your kid might die, but I won’t…’ and expected me to agree that was a good thing.

But that is what happens every day now.

To my face.

About my child.

And me.

Anyone who needs a reminder of why we can’t just give up and join in the disease bingo, should scroll back to the top of this piece and hit play on Stevie. Then scroll back down here and read the lyrics.

1975 Stevie.

Completely out of sync.

Which is oddly apt.

…

I took my love, I took it down

Climbed a mountain and I turned around

And I saw my reflection in the snow covered hills

'Til the landslide brought me down

Oh, mirror in the sky, what is love?

Can the child within my heart rise above?

Can I sail through the changin' ocean tides?

Can I handle the seasons of my life?

Mmm

Well, I've been 'fraid of changin'

'Cause I've built my life around you

But time makes you bolder

Children get older

And I'm gettin' older, too

Well, I've been 'fraid of changin'

'Cause I've built my life around you

But time makes you bolder

Even children get older

And I'm gettin' older, too

I'm gettin' older, too

Ah, take my love, take it down

Oh, climb a mountain and turn around

And if you see my reflection in the snow covered hills

Well, the landslide will bring it down

And if you see my reflection in the snow covered hills

Well, the landslide will bring it down

Oh, the landslide will bring it down

Songwriters: Stephanie Nicks

Landslide lyrics © Kobalt Music Publishing Ltd.