At 27 I was diagnosed with Acute Myeloid Leukemia and quickly learnt what you really don’t want to leave until the last minute

This week is life insurance awareness week and before you roll your eyes and snooze off, please give me three minutes to quickly tell you (through my direct, dry-witted, personal story) why it is essential you know what life insurance is – because, trust me, you never know when you are going to need it.

At 27 years old I was diagnosed with Acute Myeloid Leukemia (AML), it took me a long time to admit I was a cancer patient. Then for a long time. I was only that: a cancer patient.

Doctors, (in their wonderfully empathetic style) told me straight up that I had a 35 per cent chance of long-term survival. While I couldn’t quite comprehend what my diagnosis meant, I did understand that the life and plans I had for my late twenties, early thirties were shattered.

With a low probability of ever getting well, I took the view that the only option was to accept my new reality, which I did. Over the next year and a half of chemo, radiation, blood transplants and bone marrow taps, the hospital became my home, the place I lived.

It wasn’t all bad, I became fluent in “medicalese”, formed a female cancer club, built an enviable puzzle collection, and learned to use my mobile IV drip as a skateboard. And the answer is yes dear reader, the nurses did love me.

So, when you go through a traumatic experience like this, people treat you differently. They start telling you how much of an inspiration you are. You’re a fighter. A hero. Someone who has lived the mythical hero’s journey, who has suffered impossible trials and against the odds lived to tell the tale, returning better and stronger for what you’ve been through.

The truth is that for me there was no flying into my superhero cape of remission – in some ways, the hardest part of my cancer experience began once the cancer was gone – that heroic journey of the survivor we see in films, it’s a myth, it is false.

The reality is, it can be a slow, hard road – it comes with potholes, side steps and bumps along the way. A long arduous journey without a clear finish line isn’t the stuff movies are made of, which is why the projection of heroism and constant gratitude can dangerously erase the very real challenges of recovery.

On paper, I was getting better – I was in remission, my blood counts were improving, and the patches of hair I lost, started growing back. To the outside world, I clearly didn’t belong in the kingdom of the sick anymore. But in reality, I felt like an impostor, mentally overwhelmed and unable to function, but determined to do so.

Each day was different, some days I admitted defeat and scrolled RSPCA in search of approx. 12 cats, other days I was allergic to cats and believed I could perhaps return to the workforce. But I constantly thought: what kind of job can I hold down when I need to nap in the middle of the day? When my sensitive immune system sends me to the hospital on a regular basis? And then there are the invisible, mental imprints my illness had left behind: the fear of relapse, the unprocessed grief, the demons of PTSD that descended upon me, sometimes for days.

Now, don’t get me wrong, I am incredibly grateful to be alive and I am painfully aware that this struggle is a privilege that many don’t get to experience, but you see, we talk about re-entering everyday life in the context of war and incarceration. We don’t talk about it as much in the context of other kinds of traumatic experiences, like an illness.

Because no one had warned me of the challenges of re-entry, I thought something must be wrong with me. I felt ashamed, and with great guilt, I kept reminding myself of how lucky I was to be alive at all, when so many people were not.

I missed the sense of clarity I’d felt at my sickest. Staring your mortality straight in the eye has a way of simplifying things, of rerouting your focus to what really matters. I realised I had been fighting for one purpose, to stay alive. Now that I had done that, I had absolutely no idea how to live.

However, the continuous pile of medical bills quickly whipped me back to reality and forced me to think about finances, and while I was very fortunate to have an employer who financially supported me through the majority of my treatment, there was a period in my life that would make Mr Barefoot Investor mildly uncomfortable.

While I worried and stressed about what to do, a medical professional suggested I investigate my life insurance policy within my superannuation fund. Like many Australians, I had no idea I was even paying for insurance in my superannuation, and when I looked a little closer, I released I was actually covered for three policies:

Death – yes well hello, I am still here, so that wasn’t going to help.

Total and Permanent Disability (TPD) – technically I could have claimed TPD with the whole “35 per cent chance to live bombshell” but, on examination, TPD is exactly as it sounds, totally and permanently disabled – it is basically me saying “I will adopt those 12 cats and never work another day in my life”, for me this was not an option.  

Income Protection – aka the saviour. Individual policies have waiting periods, but mine had well and truly passed and I was eligible to claim on my income protection insurance at a time of great need. (surprise!)

So, in closing, deservedly or not life insurance gets a pretty rough wrap, but as it is life insurance awareness week, please take five minutes out of your day to check in with your superannuation fund, a life insurer or your financial adviser and find out exactly what you’re covered for. 

Don’t leave it until you need to make the claim, be prepared and aware. Because, every single one of us will have our life interrupted, whether it’s by the ripcord of a diagnosed illness or some other kind of heartbreak or trauma that brings us to the floor.

We need to find ways to live in the in-between place, managing whatever body and mind we currently have. And in the end, I think that’s the trick: to stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there’s some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it. 

If you’re able to do that, then you’ve taken the real hero’s journey. You’ve achieved what it means to actually be well, which is to say: I am never giving up – because being cured is not where the work of healing ends. It’s where it begins.

For those who like a happy ending (still not a hero): thanks to an army of supporters, sound financial advice and a very patient-therapist, I am not just still here, but 18 months in remission, cat-less and thriving at work.

OPINION PIECE - by Esther Jago, Manager of Public Affairs

This article was first published by Women's Agenda on Friday 31 July.


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