We lost a dream on Friday, Anders’ e-bike on Saturday. I found solace in books, Anders tinkered in his shed. A bike can be replaced and a new day brings hope and a chance to start again.
“The only way Daddy can ride his bike is to remember it”, our five-year-old daughter told me as I washed her hair in the bath. And that’s what you do when you lose something you once cherished, you fill your heart with memories. Of favourite sunnies, a cherished pet, a friend who left too early, a baby unborn, and Grandpa.
And you grieve: through disbelief, fury, sadness, and ‘if only’. And sometimes, after the storm of emotions have passed, feelings of loss surrender to gratitude, reflection and resolve.
When I was diagnosed with a brain tumour six years ago, I felt I had lost everything: independence, dreams, identity, life. Anders and I escaped to the Lost World, a favourite place on our local Mountain — kunyani. We sat atop a cliff with the city’s lights below and the milky-way above. We held each other and cried. Tomorrow we would find the strength to face the ‘monster’ in my head.
Brain surgery removed the tumour and I later received a hopeful diagnosis of a slow-growing Rosette Forming Glioneuronal Tumour of the Fourth Ventricle. A long name for a tumour that is extremely rare. I loved roses, but that morning I vowed I would never grow them in my garden.
My recovery was challenging. The surgery and treatment had left me with double-vision, a weakened right-hand side of my face, difficulties with balance and coordination, fatigue, and insomnia. My future was uncertain. Illness was isolating. But it was the loss of my smile that rattled me.
Anders worked two jobs, anaesthetist and carer. I was ‘queen of the house’ and my ‘recovery kitten’, Snowball, was princess. What a sight I must have been shuffling along the hallway with my walking-frame, bumbag of ‘medical accessories’, occasional clothing and eye-patch. Day and night I played chase with Snowball, listened to the Lord of the Rings and steadily ate the contents of the fridge. Anders and I erupt into laughter when we remember.
And there were black days when I wished I could dissolve. I bargained that my time was up and dreamt of angels visiting in the night. There was no escaping our dread about the future. On other days I smouldered, breathing my frustration on loved ones.
Humour came to our rescue. It helped us to come to terms with our ‘lot’. Double vision was entertaining. I joked I had two husbands and I was proud of my new eye tricks. When I started to feel energetic I set up the exercise bike in the hallway and pedalled in fluorescent lycra to ABBA. I rode and sang until my body ached with delight.
As the months passed I learned to walk independently and I found my smile. Although my double-vision remained I began to make peace with my brain tumour journey. With time, hearts and brains can heal.
And there was joy, when I learned to look beyond what I had lost to all that I had: life, love, family, friendship. I found happiness in a cup of tea, ‘snail mail’ from a friend, a walk on the Mountain, and a hug from a loved one. With time, my feelings of loss surrendered to gratitude.
And there was also the gift of reflection and resolve. As German philosopher Friedrich Nietzsche once said, “What doesn’t kill us makes us stronger”. And it’s true, if you can endure loss, sometimes you emerge remade. I know I am not the same person I was before my brain tumour journey. I am more resilient and courageous. I stand tall when life conspires again me. And I try to live presently, love generously and make time for the things that matter to me.
Yesterday, when my three-year-old son kissed my chin and asked, “Are you sad Mummy?”. I held him close and said, “It’s okay to feel sad sometimes. Or angry or quiet as a mouse”. Then I took his hand and walked out into our garden and smiled at all that Anders and I have grown together: three children, a home, vegetables, fruit trees, even the odd rose or two.
Loss will always be part of the tapestry of life. As I navigate our family’s ‘weekend of loss’, I will try to remember the lessons that I learnt all those years ago.
To grieve honestly and patiently. To be grateful for what I have and to persevere when you are set adrift. With time, I know that loss may bring the gift of gratitude, reflection and resolve.