This first-person chronicle is the experience of Calgary-based Jason Miller. For more information on CBC’s First Person Stories, please see the FAQs.
Standing in a long line for the Peter Lougheed Emergency Room triage office in Calgary, my thoughts race. I scroll my phone for distraction and take a deep breath.
That’s what I do; it is practical. It’s weird being good at something like navigating a hospital emergency room. But that’s my reality.
When it’s my turn, I say, “Hello. I’m looking for my wife, Jennifer. She was brought here by ambulance.
At the start of our medical journey, I was a “young caregiver”. I am now 45 years old and already have 16 years of experience providing care to my wife.
That means 16 years of sitting at a hospital bedside, bearing witness to her pain, stressing over treatment options, and grieving our two now impossible dreams.
And there is a lot of mourning. Because nothing prepares you for this strange role — when you’re not the one who’s sick but your life changes all the same.
Our love story began over 20 years ago in the summer of 1999. We were young and carefree, working summer jobs at the Port of Vancouver and I fell in love with an attractive, intelligent and full of confidence.
Jennifer moved to the east coast for college and we dated long distance. Eventually, we settled down together in Vancouver and then decided to try our luck in Calgary. We both had dreams. We were in our late twenties, thrilled to be in booming Calgary. We wanted to start a family and find work in our fields; mine was maps and geography, his was history.
But Jennifer’s treatments took over our lives.
It was September 2006, just two months before our wedding, when she called me at work. He was diagnosed with a pulmonary embolism caused by a blood clot in his lung. But with treatment, Jennifer improved enough that we got married, bought a condo, and thought those health issues would soon be resolved.
They weren’t. Soon she was having trouble breathing and needed 24-hour oxygen. To remove the blood clots, Jennifer underwent a pulmonary thromboendarterectomy in March 2007. Two years later, she needed a double lung transplant , then in 2021, she developed lymphoma, a cancer of the lymph nodes.
Jennifer struggled with her illness but did not feel sorry for herself; she kept looking forward.
I tried to do the same but kept my emotions pent up. It was easier to keep everything and pretend everything was fine. I built a story according to my needs and my perception of reality. When my story was challenged, I got angry. I was mad at everyone: Jen, friends, family, everyone was in good spirits.
I thought about leaving. Was I strong enough for this?-Jason Miller
I thought about leaving her. Was I strong enough for this? But I don’t think I could respect myself if I picked up the phone and said I was done. And more importantly, I still deeply loved my wife.
For a long time, I let the storm rage and build inside me.
I found it difficult to ask for help, seeing it as a sign of weakness or failure. When my friends and family asked me how I was doing, I said “I’m fine under the circumstances”, I joked and I changed the subject.
In terms of professional support, resources to support young caregivers are limited. Most are set up for seniors caring for aging spouses.
In a support group for spouses of patients with complex medical needs, there was me (then 30) and three women in their 60s. I struggled to share what was on my mind – the missed opportunity to have a family and the challenges of intimacy – with people my grandmother’s age.
But it’s like a quote I found attributed to Buddha: “Don’t try to calm the storm. Calm down. The storm will pass.
Eventually I realized that I had to accept that Jennifer’s illness would always dominate our life together and I needed help to stop battling the storm.
I found a mental health support group separate from Jennifer’s medical team. I relied on friends and family who stayed with me. And slowly, I learned to be compassionate with myself and set aside time to do things on my own, like exercise and meditation.
I now understand that accepting help is a sign of strength, not weakness. And Jennifer and I consult regularly; we talk about what makes us anxious.
All things considered, it’s hard to believe it’s been 16 years.
We never had children and I still don’t have a job in my field. But I’m proud of where I am now. I’m proud of myself for staying on this journey. I make mistakes, but I also give myself a break.
As for Jennifer, her storm is also calm at the moment. She is in remission from her lymphoma and 13 years after the transplant. The sky is blue. And we continue to laugh in difficult situations, enjoying life as it comes, good or bad.
Tell your story
CBC Calgary is hosting a series of in-person writing workshops across the city to help community members tell their own stories.
Learn more about the workshop organized by the Genesis Centre:
To learn more about our writing workshops or to suggest a community organization to help facilitate, email CBC producer Elise Stolte or visit cbc.ca/albertastories.