At age 29, illness shattered my dreams. And I wasn't the sick one

This First Person column is the experience of Jason Miller who lives in Calgary. For more information about CBC's First Person stories, please see the FAQ.

Standing in a long line for the triage desk in the Peter Lougheed emergency room in Calgary, my thoughts race. I scroll on my phone to distract myself and take deep breaths.

This is what I do; it's practised. It's odd to be 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". Now I'm 45 and already with 16 years of experience providing care for my wife. 

That means 16 years of sitting at hospital bedsides, bearing witness to her pain, stressing over treatment options and grieving both of our now impossible dreams. 

And there's a lot of grieving. Because nothing prepares you for this strange role — when you're not the one who is sick but your life turns upside down anyway.

Our love story started 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, smart woman full of confidence.

Jennifer moved to the East Coast for university and we dated long distance. Eventually, we settled together in Vancouver and later decided to try our luck in Calgary. We both had dreams. We were in our late 20s, excited to be in Calgary, a city that was booming. We wanted a family and to find work in our fields; mine was maps and geography, hers was history.

But Jennifer's treatments took over our life. 

It was September 2006 — a mere two months before our wedding — when she called me at work. She was diagnosed with a pulmonary embolism, which was caused by a blood clot in her lung. But with treatment, Jennifer improved enough for us to get married, buy a condo, and we assumed these health issues would soon be resolved.

They weren't. Soon she was struggling to breathe and required oxygen around the clock. To remove the blood clots, Jennifer underwent a pulmonary thromboendarterectomy in March 2007. Two years later, she needed a double lung transplant, and then in 2021, she developed lymphoma, a cancer in the lymph nodes.

Jennifer struggled with her illness but didn't get stuck in self-pity; she kept looking forward.

I tried to do the same but kept my emotions bottled up. It was easier to keep everything in and pretend everything was fine. I built a story to suit my needs and my perceptions of reality. When my story was challenged, I got angry. I was angry at everyone: Jen, friends, family, everyone was fair game.

I thought of leaving. Was I strong enough for this?- Jason Miller

I thought of leaving her. Was I strong enough for this? But I don't think I could respect myself if I picked up and said I'm done. And more importantly, I still deeply loved my wife.

For a long time, I let the storm rage and build within me.

I struggled to ask for help, seeing it as a sign of weakness or failure. When friends and family asked how I was doing, I would say "I am fine considering the circumstances," make a joke and change the subject.

As for professional support, there are limited resources targeted at supporting younger caregivers. Most are set up for older adults caring for aging spouses.

At one 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 lost opportunity to have a family and challenges with 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 yourself. The storm will pass." 

Eventually I realized I had to accept that Jennifer's illness would always dominate our life together and I needed to get help to stop fighting the storm.

I found a mental health support group separate from Jennifer's medical team. I leaned on friends and family who stuck with me. And slowly, I learned to be compassionate to myself and carve out time to do things on my own, such as exercise and meditation. 

I now understand accepting help is a sign of strength, not weakness. And Jennifer and I check in with each other regularly; we talk about what makes us anxious.

All things considered, it's hard to believe it has been 16 years. 

We never had children and I still don't have a job in my field. But I am proud of where I am now. I am proud of myself for staying on this journey. I make mistakes, but I'm also giving myself a break.

As for Jennifer, her storm is quiet for the moment as well. She's in remission from her lymphoma and 13 years post-transplant. The sky is blue. And we continue to laugh our way through tough situations, enjoying life as it comes, good or bad.

Telling your story

CBC Calgary is running a series of in-person writing workshops across the city to support community members telling their own stories.

Read more from the workshop hosted by the Genesis Centre:

To find out more about our writing workshops or to propose a community organization to help host, email CBC producer Elise Stolte or visit cbc.ca/albertastories.