Four Rooms A Meditation on Life, Death and Aging with a Disability

By Stephen Trumper

My Bedroom

Early morning, Monday, May 6, 2019

I wake up abruptly, gasping for air. I’m startled, but not surprised. For the past couple of days my breathing has become increasingly laboured—not an unusual predicament for me, though not to this worrisome degree. I have lived with a tracheostomy for more than 20 years, which leaves me at greater risk for chest infections that can quickly evolve into life–threatening pneumonias. I have had numerous chest infections, but only two that required hospitalization—one five years ago, the other just last month. Will this be my third? And, if so, does it mean what I fear most is actually happening—an accelerated breakdown of a body that has already weathered six decades of disability? Call the ambulance!

Emergency

An hour later, Monday, May 6  

I’m laying stretched out on a relatively comfy Emergency bed, deeply grateful for the external oxygen being pushed into my clogged lungs. I’m also readying for the onslaught of more needles, questions and diagnostic tools. It doesn’t take long. Blood–pressure cuffs. Portable X–ray units. Blood–sugar monitors. EKG machines. Suctioning systems. So much familiar equipment to measure my bodily health; so little to aid my sinking emotional health, certainly not the humourless, young doctor who earnestly asks me if I had thought about my wishes if medical treatment fails. Mustering as much vitality as possible, I tell her I have and what I would want. And with these revelations, she quickly scurries away, leaving me agog. I’ve never been asked those questions in a medical setting. How sick am I?

Intensive Care

Evening, Monday, May 6 

I’m breathing a bit easier. The prescribed antibiotics already at work. So much so that I’ve been moved—to a room I was in five years ago. It’s still dark, kind of drab but, in many ways, a suitable place to think big thoughts about life and death. It’s a room that’s seen much of both. There are, no doubt, ghosts in here. I wonder how much sorrow this place has seen when medicine fails. And how much joy and relief when it succeeds. I am someone relatively new to ICUs: a person with a significant childhood disability who has lived into his sixties. That modern medicine has kept me going so long is a gift, one denied to countless “crippled” kids of earlier generations who died in childhood or adolescence—as would have happened to me had I been born a decade or two earlier.
I think about this a lot as I watch the steady drip–drip of antibiotics plop through my IV.

Semi–Private

Afternoon, Wednesday, May 8

The trend lines are good. My breathing has improved, even with less external oxygen blowing into me. I have just come from a CT scan and am settling into a room with much less monitoring and much more sunshine. My mood lightens and I think of a good friend who regularly goes on spiritual retreats, where participants only speak at specific times—the idea being that you reflect in silence on your life and the world as it is. This spring St. Michael’s Hospital in downtown Toronto has become my unplanned, never–totally–quiet retreat, a place to practice deep breathing and grapple with a stage of life I never thought I’d reach. There have certainly been disappointing, even heart–breaking surprises. A weakening right hand and arm.  An inability to sit straight up for lengthy periods. There’s more but enough to show that the challenges of disability never stop, though I dearly wish they would.

My Bedroom

Evening, Friday, May 10

I have been discharged. The antibiotics, like tiny Pac People, have gobbled up the invaders trying to asphyxiate me. The medical consensus is that both my spring chest infections were fast–forming pneumonias—one viral, the other bacterial. “So no linkages between them?” I asked. “Nothing other than bad luck,” a specialist replied. Now, breathing easy, I am happy to be laying in my own bed, relieved to know my body isn’t yet on the cusp of a total meltdown and that no big decisions about life and disability need to be made at this highly hoped for homecoming.

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

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