Life With PH: The Tragically Hip and The Chronically Ill

Staring Down the Barrel

On March 24, 2016 the Canadian band called The Tragically Hip announced that their lead singer, Gord Downie had been diagnosed with terminal brain cancer. Shortly after, The Tragically Hip announced that they would be going on a summer tour.

Although I have pulmonary hypertension I imagine that there are a few overlaps between us, being that we both have incurable illness that are often considered fatal. I was very motivated by Downie’s choice to go back on tour despite the challenges regarding his health. Thanks to my dad’s love of music, I had grown up listening to The Tragically Hip. Their music has always held a special place in my heart. Their lyrics took on a different meaning once I was diagnosed with pulmonary hypertension — their words became more powerful to me.

It was in that moment that I decided I wanted to at least try to go to concerts again, something I hadn’t done since I was diagnosed with pulmonary hypertension.

I know that living with a fatal diagnosis can feel like you’re staring down a barrel of a gun, and it wasn’t backing down. If I couldn’t do it, at least I tried and I would know for sure what I was capable of.

I Used to be “With The Band”

I used to sell band merch and I was the world’s smallest roadie for a few bands. I was like an ant — small but mighty. Music was a huge part of my life and going to concerts was my absolute favorite thing to do. Once I was diagnosed with pulmonary hypertension, I couldn’t imagine going to another concert again. A pang of sadness and jealousy rolled over me every time I read that some of my favorite bands were playing near town.

On Sunday, August 14, I was lucky enough to be one of 20,000 people to see The Tragically Hip at the Air Canada Centre in Toronto. I stopped believing in fate a while ago, but something about scoring three tickets for a concert that sold out in a minute felt like kismet. It felt magical because I had stopped going to concerts after I was diagnosed with pulmonary hypertension, and here I was holding tickets for a concert by the man who inspired me to brave that very large concert.

Oxygen Tanks, Tumors and Rock Stars

At first I felt embarrassed about bringing and using my oxygen tank, but then I noticed others in the sea of people who had different kinds of disabilities and illnesses. There were also fellow cancer fighters there to cheer on Downie. I know his choice to go on tour inspired many people, but perhaps his choice motivated more people like us — the ones who feel like they are staring down the barrel of a diagnosis gun, the ones who are chronic illness rock stars.

Waiting for The Tragically Hip with my oxygen tank behind me.

The lights dimmed and The Tragically Hip came out on stage. Downie was dressed up like a rock star ring leader, wearing a custom-made glittery blue suit with a matching top hat festooned with a feather. He came out with the momentum of a badger who just downed an energy drink, and he managed to keep that level of energy for the band’s two-hour and eight minute set.

I know first hand that being sick and looking sick are not always related, but he did not look like a man who endured several grueling different types cancer of treatments, including surgery to remove some of his brain tumor. He slithered around on stage in his custom-made suits, dancing and making expressive faces to match the words he sang.

Downie and the band took several breaks, including in-between two encores. When the first break happened, I thought “no wonder he needs a break!” Boy, was I wrong to assume that he needed a breather. He came out a minute later in a teal sparkly suit. He took the break to change suits. I couldn’t believe it!

Grace, Too

The evening was an emotional one. I could see Downie’s face break down a bit when he belted out more difficult lyrics that have taken on new meaning in a post-diagnosis world. Their song “In a World Possessed By The Human Mind” reminds me of being diagnosed with pulmonary hypertension, the connection between the mind and body, and the optimism I held onto despite everything.

His performance really inspired me and the way I have been viewing living with an incurable and often progressive illness.

I have pulmonary hypertension, which has certainly put a damper on many aspects of my life. But what aspects of my life am I still in control of? What does living with an incurable (and often fatal) illness look like? Sometimes it can look as fantastical as a man singing to 20,000 people in Toronto in a gold leather suit.

The Tragically Hip concert encouraged me to keep trying, and to keep doing the things that I love while I can no matter how scary it might seem. My night also showed me how silly it was to miss out on something amazing because I would have to use my oxygen tank.

The night ended with the song “Grace, Too” which has taken on a special meaning to me in my post diagnosis world. Maybe these words will inspire you too.

“I come from downtown, born ready for you
Armed with will and determination, and grace, too”
Photo credit: Paul McKinnon / Shutterstock.com