Standing in a long line for the triage desk at the Peter Lougheed emergency room in Calgary, my thoughts are racing. I move my phone to distract myself and take deep breaths. This is what I do; has been practiced. It’s weird to be good at something like navigating a hospital emergency room. But this is 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 beginning of our medical journey, I was a “young caregiver.” I am now 45 and already with 16 years of experience providing care to my wife. That means 16 years of sitting in hospital beds, witnessing her pain, stressing over treatment options and grieving for both of our now impossible dreams. And there is much mourning. Because nothing prepares you for this strange role — when you’re not the one who’s sick, but your life is turned upside down anyway. Our love story began over 20 years ago, in the summer of 1999. We were young and carefree, working summer jobs in Vancouver Harbor, and I fell in love with an attractive, intelligent, confident woman. Jennifer moved to the East Coast for college and we were dating 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 thriving city. 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 lives. It was September 2006 — just two months before our wedding — when he called me to 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 an apartment, and we assumed these health issues would soon be resolved. Jason Miller, left, and his wife, Jennifer Anderson, celebrate their engagement in 2006. That’s around the time he started getting sick. (Submitted by Jason Miller) It was not. Soon he was having trouble breathing and needed 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 of the lymph nodes. Jennifer struggled with her illness but didn’t wallow in self-pity. he kept looking forward. I tried to do the same but kept my feelings bottled up. It was easier to keep everything inside and pretend everything was fine. I made up a story that fit my needs and my perceptions of reality. When my story was challenged, I got angry. I was angry with everyone: Jen, friends, family, everyone was fair. 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 and said I was done. And most importantly, I still loved my wife deeply. For too long, I let the storm rage and build inside me. I struggled to ask for help, seeing it as a sign of weakness or failure. When friends and family asked me how I was doing, I would say “I’m fine considering the circumstances”, make a joke and change the subject. In terms of professional support, there are limited resources aimed at supporting younger carers. Most are created for seniors who care for elderly spouses. Jason Miller, center, and his wife, Jennifer Anderson, enjoy a moment of respite from the illness they’ve had to learn to cope with. (Submitted by Jason Miller) 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 with intimacy—with people my grandmother’s age. But it’s like a quote I found attributed to the Buddha: “Don’t try to calm the storm. Be still. The storm will pass.” I finally realized that I had to accept that Jennifer’s illness would always dominate our lives 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 by me. And little by little, I learned to be compassionate with myself and make 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 check in with each other regularly. we talk about what worries us. All things considered, it’s hard to believe it’s been 16 years. We never had kids and I still don’t have a job in my industry. 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 calm right now, too. She is in remission from lymphoma and 13 years post transplant. The sky is blue. And we keep laughing through difficult 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 learn more about our writing workshops or to suggest a community organization to help host, email CBC producer Elise Stolte or visit cbc.ca/albertastories.
