Living Under a Genetic Cloud

What my mum's younger-onset dementia taught me about fear, uncertainty and the danger of postponing your life.

There are some people who move through life blissfully unaware of what might be waiting for them around the corner.

And then there are people like me.

People who have spent decades carrying around a giant, invisible “what if?”

My mum was diagnosed with younger-onset dementia when she was just 51 years old.

I was 15.

At an age when most teenagers are worried about school exams, first crushes and whether their friends like them, I found myself learning words like Alzheimer’s, diagnosis and prognosis.

I’m 38 now.

Mum died almost seven years ago, but in many ways her diagnosis never really left me.

Because dementia didn’t just happen to my mum. It happened to our entire family.

And for a long time, it felt like it might happen to me too.

One of the questions I get asked most often is whether Mum’s dementia was genetic.

The honest answer is: we don’t know.

There was no known family history. No obvious breadcrumb trail stretching back through the generations. No definitive answer that tied everything up neatly with a bow.

What we do know is that younger onset dementia can sometimes have a genetic component.

Sometimes.

And when the word “sometimes” enters the chat, your brain gets to work.

Especially if you’re an anxious person.

Especially if you’re a catastrophiser.

Especially if you’re me.

For years, I have treated every forgotten name, misplaced set of keys and missed appointment like potential evidence.

Why did I walk into that room?

Why can’t I remember that actor’s name?

Did I already tell this story?

Is this normal?

Or is this how it starts?

When you’ve watched someone you love lose pieces of themselves over nearly two decades, your relationship with memory becomes complicated.

Every lapse feels loaded.

Every mistake feels suspicious.

Every forgotten password becomes a potential clue.

I know I’m not alone in this.

Whether it’s dementia, Huntington’s disease, breast cancer, heart disease or another hereditary condition, millions of people live with some version of the same question hanging over their heads.

What if I’m next?

It’s a strange way to live.

You’re healthy.

Nothing is wrong.

But there’s a shadow standing beside you anyway.

A future version of yourself that may or may not exist.

A possibility.

A threat.

A question mark.

For a long time, I let that question mark influence how I lived.

Partly because I thought I was being practical.

Partly because I thought I was being prepared.

And partly because anxiety is incredibly convincing.

It tells you that if you worry enough, you’ll somehow be protected from the bad thing happening.

As if constant vigilance is a form of insurance.

As if fear itself can function as a preventative measure.

Spoiler alert: it can’t.

Worrying about a future event doesn’t stop it from arriving.

It just means you suffer twice.

The irony is that while I’ve spent years worrying about developing dementia one day, there are approximately a million other ways my story could end first.

I could get hit by a bus tomorrow.

A distracted driver could run a red light.

I could develop an entirely unrelated illness.

A coconut could literally fall on my head while I’m on holiday.

Statistically unlikely?

Sure.

Impossible?

Not at all.

And that’s the point.

The future has never come with guarantees.

Not for me.

Not for you.

Not for anyone.

The difference is that some of us have been given a more visible reminder of that reality.

Living through Mum’s diagnosis forced me to confront uncertainty far earlier than most people.

It taught me that life can change in a single appointment.

A single phone call.

A single test result.

But somewhere along the way, I realised that uncertainty isn’t unique to people with hereditary diseases lurking in the family tree.

It’s the human condition.

Every single one of us is operating without a guarantee.

We just pretend otherwise because it’s more comfortable.

And maybe that’s why I’ve become increasingly interested in the idea of living now rather than later.

Not in a reckless way.

Not in a “quit your job and move to Bali” kind of way.

But in a present-tense way.

A way that says yes to the dinner.

Books the holiday.

Makes the phone call.

Starts the project.

Buys the good wine.

Lights the expensive candle.

Wears the sparkly dress.

Takes the photo.

Because none of us know how many opportunities we’ll get.

As I prepare to become a mum myself, this lesson feels more important than ever.

For most of my life I’ve been a frequent visitor to What If Land.

I know the place intimately.

It’s located just across the water from Worst Case Scenario Island.

The ferries run constantly.

The accommodation is terrible.

The weather is somehow always stressful.

And the return flights are outrageously expensive.

Meanwhile, my partner Ned seems completely uninterested in visiting either destination.

One of the things I admire most about him is his ability to stay where he actually is.

Not six months from now.

Not ten years from now.

Not inside a hypothetical disaster that hasn’t happened.

Here.

Today.

In reality.

It’s a skill I’ve spent years trying to learn.

And one I’m determined to practise as I enter this next chapter of motherhood.

Because if there’s one thing becoming a parent teaches you before the baby has even arrived, it’s that there will always be something to worry about.

The worries simply evolve.

Pregnancy worries become newborn worries.

Newborn worries become toddler worries.

Then school worries.

Then teenage worries.

You can spend your entire life standing guard against imaginary futures if you let yourself.

Or you can participate in the life that’s unfolding right in front of you.

I still don’t know what my future holds.

None of us do.

Maybe I’ll develop dementia one day.

Maybe I won’t.

Maybe science will continue advancing at a pace that transforms diagnosis, treatment and prevention.

Maybe I’ll live to 100.

Maybe I won’t make it nearly that far.

But what I do know is this:

I am here today.

I am healthy today.

I am loved today.

I am becoming a mother today.

And today is the only thing any of us have ever truly been promised.

So if you’re carrying your own genetic cloud, whatever form it takes, I hope you remember this.

The shadow is real.

Your fears are understandable.

Your uncertainty is valid.

But your life is happening right now.

Not in ten years.

Not after a diagnosis.

Not after a test result.

Not after you’ve finally achieved certainty.

Right now.

So, go live it.