When Something Goes Wrong – A True Story

Six months ago, while running a workshop in Brisbane, one of the participants from the program, a brave husband and father of two and also a talented writer, told me a story about the illness of his wife Tania. She was just recovering from brain surgery. 

I asked him if he would write the story for me. He accepted knowing that one day we would publish it. I want to include this story in our blog edition today to encourage all of those who suffer, for their families who support them and to remind the ones who enjoy good health of how lucky we are.

There are things in life that we take for granted so reading Ron’s story is a great reminder to be grateful for what we do have. Thanks Ron for your wonderful contribution to the blog.

Ron's Story

Sitting in the middle of one of the world’s harshest deserts drinking cold beer and eating freshwater crayfish under the blanket of stars that are so much brighter out there, you feel invincible. You have conquered a desert that claimed the lives of Burke and Wills.

And just to prove your point, you are camped beside their famous Dig Tree.

That was the experience of a life time as my wife Tania and I, our two kids Marcello and Nadia, camped on the banks of the Cooper Creek. We had driven for three days, from Brisbane to get there…and it was worth it. Challenging nature has a way of putting your life into perspective – and if you win, you feel like you are in control, that you can do anything.

And then, just three weeks later, we were all challenged by something bigger than the Milky Way, bigger than the Dig Tree legend, bigger than anything we had ever faced as individuals or as a family.

My wife had an epileptic seizure just two days after we returned from our four week trip through Outback Australia. It was 2.25 am on a Saturday – the time is deeply etched into my memory. I was awoken by the shaking of the bed, the sound of gurgling, gnashing of teeth. I turned on the bedside lamp and, for a split second, I was frozen. My wife was not my wife – she was someone I could not recognise with her features distorted, writhing.

Instinct took over, thankfully, and I placed her in the recovery position until she became calm. It seemed like hours, it was in reality less than 5 minutes. And then she was back, awake, wondering why I was sitting beside her on the bed holding a bloody towel – she had bitten the inside of her mouth. I don’t know why but I didn’t call an ambulance – maybe, I somehow believed that this was just another challenge and we would win, just like we had conquered the Simpson, the Birdsville Track.

At the same time, I felt helpless…and totally useless.

My wife had suffered two previous seizures, but that had been more than 10 years earlier. We agreed that she needed to see our family GP, and that was the start of the longest journey and the biggest challenge of our lives together. Tania was referred to a neurologist, who in turn quickly ordered an MRI a modern medical technique which had not been around when she had her first seizures.

We expected nothing more than a confirmation of a seizure – what we received was hard hitting, like being repeatedly punched in the gut… Tania had a brain tumour. A top neurosurgeon put the options to us – do nothing, have a biopsy procedure, or have a full operation to remove the tumour whether or not it was malignant or benign. The options also came with risks – seizures, strokes, life support, and death. My wife took all of 10 seconds to make up her mind – remove it, and remove it as soon as possible.

I again felt helpless…and totally useless. I was not in control. It was like being in a car when the brakes fail or when the steering gives out.

The operation was scheduled less than a week later.  Less than 7 days to get our affairs in order. First, we had to tell the children. How do you tell your kids - a 10 year old boy and a 7 year old girl - that Mum is very, very sick; that she may not get better; that there’s nothing that can be done but put your faith in the doctors.

They were too young, too innocent to fully understand.  There were no visible signs of illness, no symptoms they had seen. They found it difficult to even comprehend that Mum could no longer drive them to their school – they would need to transfer mid-term to a walking distance school.

Believe it or not, breaking the hearts of the kids was the easy part.

The tough part was for Tania and I to realise that we were not in control, that we were not invincible, that we needed to spend the week to organise our affairs.  Getting our wills in order was relatively easy. The power of attorney documents – not so easy.

Finally, a tearful soul pact for me to agree that life support machines would be switched off if the operation left Tania in a vegetative state. That was the toughest moment of my life. I know others have made similar pacts with their partners, parents. But most of those agreements were made in a non-pressurised moment, a moment of sanity, when all concerned were fit, healthy.

How many have done it just 24 hours before a highly risky operation?

The night before the operation, we did not sleep – it was a surreal experience not being asleep but still believing that you were in a nightmare that would end when the sun finally came up.

Unbelievably, the sun came up and we did not wake from the nightmare. It went on. Tania said her good byes to the kids. They got to spend the day at home with my eldest daughter from a previous marriage. They did not understand. Tania and I did not shed any tears…at least not then. We did not want the kids to see our pain.

At the hospital, there seemed to be a mountain of paperwork to complete, more tests…and then the moment when we were separated. We did not say good bye – I promised to be there when she came out of surgery.

The next 6 hours were gut wrenching. Friends tried to distract, amuse, comfort and just be close but my mind kept wandering back to the Dig Tree, the Simpson Desert, the Birdsville Track, Flinders Ranges…back to when we were in control.

Tania came out of surgery in great pain but her spirit was stronger. I was advised that the tumour was benign – one victory at least. I went home absolutely drained emotionally and physically. I held my kids closer than I have held anything or anyone…I cried all night.

When Tania finally came home, the kids and I made a special dinner. It was the first of many special dinners, special times that we share as we all recover one day at a time.  Daily routines and priorities quickly changed…cooking, cleaning, school lunches, and home work – I’m doing better at year 3 Maths than first time around.

Then there was the little matter of trying to do my day job, mostly from home with the help and unbelievable support of my work colleagues. All this had to be managed along with making sure Tania was comfortable and recovering. I bow to single parents – they are the real champions of modern society.

We marched boldly, bravely in Tania’s case, forward for three months after the operation, but a routine MRI showed the tumour was back. The neurosurgeon, who had done an amazing job to remove a tumour the size of my fist, apologised.

He had warned this particular type of tumour had a habit of coming back, and coming back nasty. He thought he had beaten it. Our world was again a nightmare. Six weeks of daily radiation followed – hair loss, physical sickness, drugs to stop seizures, drugs to counter the impact of those drugs.

Now, after the radiation, we are in positive territory although the seizures – now minor in size continue – limit my sleep to two to three hour bursts as I stir every time Tania moves in bed. She now does the cooking again (a passion of her’s), limited house work and walks the kids to school and home again. This tends to make her tired – 7.30 to 8 o’clock is her time to go to sleep on the lounge.

Each day brings its own rewards, each day brings its own challenges – three steps forwards, four steps back, and then sometimes it’s only one or two steps back. The hardest part is watching her at night, as she tries to sleep with pain, the demons in her brain making her twitch, toss and turn.

Sometimes the hardest part is telling her to slow down – this is a woman who thinks at 100 kilometres an hour, who wants things done yesterday not in 10 minutes, who achieved a Grade Point Average of 6.33 in her university degree in Adult Education just weeks before her operation.

Tania’s operation was 12 months ago. We are still in recovery. I still have my secret tears. I am crying now.