After My Wife Died I Painted the Holiday She Always Wanted

About a month ago I found myself hiking up a mountain in Iceland. I'd discovered the mountain, apparently called Mt Esja, by accident, driving along a freeway without a GPS. Its immense presence and stature made me pull over and I decided to make my way to the top. And there, despite the cold wind, I sat down on a rock and painted. This is how my wife spoke about adventures. How she spoke about dying: Leave your plans aside, your material connections, your loved ones. Venture into the unknown, carrying only the bare essentials. To adventure, she said, is to practice dying.

Tess passed away on 1st April last year. April Fools Day. Cancer had taken over. The long fight had ended, if it could be called a fight. She hated when people referred to it as that. She didn’t want to fight. She wanted to live in peace until an old age, drinking tea and pottering in her garden. A romantic notion that most of us hold but ultimately discover is out of our hands. Cancer was just something she was forced to live with and she succumbed to the reality. Well, mostly. She would say she was OK with dying. Her achievements, her career, friends, family and her own sense of self were all things she was proud of. But to leave me, Freddie and Ben Ben. That was too much. That was the unnatural thing. She was a mother. A lover. That had to be the hardest thing to let go of.

About three years ago she was diagnosed while 20 weeks pregnant with our second child, Benedict. I remember going into the kitchen and finding her on the floor sobbing. It was about 9 o’clock at night. Not when the doctor should be calling. She had just gotten off the phone. It was about a lump she found in her breast that was supposed to be benign. Blocked milk ducts. Her body going through a transformation, getting ready for a baby. You weren’t supposed to feel pain from breast cancer. But it was cancer. One of those rare, abnormal kinds of cancer where no one knew how it got there or where it came from. No family history. No external circumstances. Just guesses and the imagination. Just the universe rolling its dice.

Those were intense years. We had just gotten an apartment, renovated it, found out she was pregnant again… then received this diagnosis. Then all the things that followed: surgeries, hospitals, specialists, waiting rooms, government forms, insurance policies, people with opinions and "helpful" miracle cures. Plus there was all the chemotherapy, radiotherapy, immunotherapy, and not to forget all the therapy-therapy. A full time job! Insane. I do not recommend it. By a year or so in we had both become experts at navigating the system and dealing with people. On top of that we were faced with the cold hard fact that Tess had a disease that was highly likely to be fatal.

Each diagnosis from the doctors was a slap in the face. The cancerous cells have slowed down, they’ve spread, there’s a new found cure! You’re eligible!! You’re not eligible. The whole spectrum. It was as if there was a dial that controlled your life expectancy and people were fiddling with it, turning it up and down depending on what they found and what they thought the stats said. The irony is that none of us know when we are going to die. We all exist in the 1 percent and the 99 percent. You don’t get to choose where you stand in the stats. The idea that we achieve everything in life, then turn around to reflect on our journey is simply not true. That’s Bilbo Baggins. Life is not as clean as a story. The truth is all we have is right now. That’s the one surety.

After spending months in hospitals and palliative care we decided to move home. I was the one to look after her, along with daily visits from the palliative nurses. These are people you bow your head to. It takes a certain type of person to have the compassion and practicality to be in that role. At home we took each day as it came. Constantly adjusting to the shrinking boundaries. A walk down to the beach. A walk to the bottom of the stairs and up again. A walk to the other room. To the bathroom. And when walking become too hard, we tried to figure what we could do from our bed. Play Mario Kart. Read a page or two to the kids. Then, just listen to me read to the kids.

I slept on the floor for a year and a half. It was too much to sleep in the same bed. I changed her clothes. Reheated meals that family and friends would drop at our door. Emptied her bed pan. Changed the oxygen tanks. Made the room inviting and lively. Tickled her back while being careful of the tumours. Massaged her feet. I even made sure I looked after myself when she had time with her mum and her friends. And it was all without question. All without wishing I was somewhere else.

It was only at the very end. The nurse had given me morphine and some other drug to ease the pain. All Tess could do was breathe with the little space she had left in her lungs. Freddie slept on the floor next to her bed. Ben was with his grandma. I stayed up all night looking at the clock. Making sure to give her the dosage every two hours to ease the pain. The notion of a good death. Living every moment. I remember looking at my hands and they were steady. Even though this was the hardest thing I knew exactly what I was doing. I remember thinking for the first time… Why? Why am I doing this? Why put up with all this pain? Why am I here?

Love.

Because of love. That’s how strong the love between us was. That’s how strong love between us is. Because it still exists. Tess has died but I don’t feel like love has. That is still very much alive. That’s why I can do all the things. New car, new studio, businesses, money to spend, money to give away, travel, creative endeavours, new people, strong friendships, happy adventuring kids. All the things you wish for in life… and then my wife has died. The grief. That hurts. But that’s what life is. Joy and suffering. A truly human experience.

So, a few months ago I decided to head to Iceland for five days (stopping by Munich to see my family at the Oktoberfest!) I had a plane ticket and a rental car. The rest I left up to the day. Tess and I always spoke about going to Iceland. It was one of those many things on the never-ending bucket list. Her friend Hannah Kent wrote this book called Burial Rites, the story of the last woman executed in Iceland. She described the landscape with such beauty. Juxtaposed with the harsh story of an unjustified death. The poetry of it hurt. It felt right to go there. Like a pilgrimage. I’ve been wanting to paint regularly for about five years. Whatever the case I found reasons not to. Painting is not exactly an activity that pays or fits into the day to day busyness of life. However, I’m not really one to be caught up in busyness. So I took some watercolours and stopped to paint when I felt like it. En plein air.

As I die,
Allow me to remember,
That is was always the price
Of a life well lived.
This was the tariff,
And all I lost was
What I made of
This honour,
And privilege,
Of life.
I lost you,
My husband,
My children.
But you were my greatest gifts,
And death was the foregone
Conclusion from
My first breath,
And it was worth every one,
To see but one of your smiles,
To feel but one of your love,
And I got three.
As I die
Remember;
I was only ever
Blessed.
- Final poem by my wife, Tess Ley

Jeremy Ley is currently working with Prof Joe envisioning a Dignity model of Aged Care. He’s also directing a horror film later in the year, drawing kids’ books with Anh Do, touring the world, and in his spare time has recently started painting strangers and friends.