Color & Control:

Not Dead Yet

Scary new adventures with my Achilles lung. Plus: a renewed life begins

By Stephen Trumper

When I started this column seven years ago it was not my intention to keep returning
to the state of my lungs but, as so often happens in life with disability, new problems abruptly arise and there is little you can do but deal with them, no matter how traumatic and discouraging they prove to be.

On December 15 I was back in an ambulance for the third time in less than a year. With infection again filling my lungs, I was gasping for air, the paramedics doing their best to keep oxygen flowing into me as the ambulance raced to Michael Garron Hospital in Toronto’s east end.

I was trundled quickly into Emergency, then whisked into an examining room to wait until the appropriate medical expertise could be summoned. At this point I figured I would be in hospital for about a week, as I was on two previous occasions in 2019.

I was badly mistaken. Yes, I had pneumonia, just as I’d had twice before. But this one proved to be a whopper, a powerful punch of three different infections, later joined by a hospital–born fourth, all of which extended my hospital stay to two months less a week.

My body was in shock and under attack, the infections prompting new depths of angst and frailty, forcing me onto a ventilator for five weeks and bringing with it sleep deprivation, three near-death experiences plus a druggy delirium that turned me into an ugly, crazy man with an unsettling, paranoid fantasy: for a few days I was convinced my heroic, loving daughter had been plotting to do away with me and seize my assets.

I am still apologizing to her.

I will be apologizing to her until my last breath, whenever that may finally come.


My return to reality came only after my breathing and general wellness had been stabilized. I was still on the ventilator but, through almost daily x-rays, the doctors had concluded there was far too much water in my lungs. Their solution: insert a tube into my right lung and, over the next several days, almost four litres of water flowed out of me. I had no idea a lung could hold so much.

If that was the most hopeful point in my hospital stay, the darkest came when, filled with despair, I asked the social worker for more information about MAID, our evolving assisted- death legislation. At that moment, I was not ready to pull the plug, but I had little interest in living out the rest of my life on a ventilator.

I found that asking for MAID information was unexpectedly comforting. For so long during this hospital stay I had felt helpless, and I grieved the loss of control that had marked the days after admittance. Now, I had a choice, though a particularly difficult one. Still, I welcomed the opportunity to think further, with a new perspective, about
the value of life, with or without disability. And the consequences of going against my usual spirited, optimistic nature.

Assisted death is a hot topic in disability circles, and rightly so. Any legislation that could be used to do away with the most vulnerable among us is out of place in a country that talks so much about the importance of diversity. My view is that diversity must include disability in all its complexities.

Yet diversity must also include individual choice and, during some bleaker moments, I considered the possibility that leaving a world that is often cruel and hostile to people with disabilities might be, in the end, a blessed relief.


I was discharged from hospital in early February. Waiting at home for me: an arsenal of pneumonia–fighting machines, gizmos and other equipment. There’s more: nurses now come by more frequently to check my vitals and my doctors are keeping closer tabs on me.

As I write I have been home for a month. I feel better, stronger. My breathing has noticeably improved. I am significantly thinner (thanks to the All–Liquid Ventilator Diet). I now think of this period and years ahead as my bonus life, a gift from my awesome daughter who, in the midst of my MAID dilemma, quietly said to me: “Dad, why not wait a bit to see what happens?”

Stephen Trumper serves on the board of the Canadian Abilities Foundation. He is an independent writer and editor. He is also a journalism instructor at Ryerson University.

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