He’d cared for me before diagnosis, pulling me out of snow banks when I fell. Later, he rode the prednisone rollercoaster with me, as my spirits sunk then soared and I dealt with a swollen face and ripped skin, immunosuppression and insomnia.
During the three years we’d worked in different cities, we saw each other every few months and vacationed together. He’d take my woeful phone calls, reminding me, “You can do it.”
When he was posted to Toronto, we decided to move in together, without much thought.
In marriages involving chronic illness, divorce rates are said to be more than 75 per cent. A study I found in the Journal of Oncology reported that spouses are actually lonelier than their ill partners and have lower levels of well-being and marital satisfaction. When illness takes over, partners become patient and caregiver.
While I can’t find any statistics on how less committed (noncontractual) relationships fare, it’s reasonable to assume the same, if not worse. When I first got sick, I was in survival mode, marshaling support, not running for girlfriend of the year. I wasn’t exactly a great catch, as they say.
We met in second year TV class at Carleton University’s School of Journalism, when we were assigned to the same four-person team. Early on, the Profs identified his TV journalism savvy and skill with a camera; I charged batteries. He was a quiet problem solver, great under the daily deadline pressure that J-school tries to ape.
I was high-energy, played basketball, worked on the campus newspaper, loved a party, late-night clubs, dancing. This was before the ‘faulty immune system’ recall that necessitated my owner’s manual be rewritten on the fly.
At that time, I floated in and out of the sizeable sphere of a well-known campus political type, who seemed to always have a bachelor party or backroom deal, with cigars, trailing him. He was funny, gregarious, opinionated . He’d had early tragedy in his life and lived like each day mattered more than the last. He was also a young Tory, which I found fascinating. He had no quiet spaces around him.
As my health deteriorated, I confided in him that my legs hurt so bad some days that I didn’t want to walk; that my elbow joints and fingers were so swollen typing was painful. He was the first person I called on the day I awoke unable to move because all my muscles had seized up. He came to emergency to hold my icy feet as the doctors unsuccessfully tried to figure out what was the matter with me. And when I felt well, I tagged along to the various functions of campus political life. I was just so tired. Eventually, like a sick girl at a house party in search of an empty bedroom, I slipped away.
In time, I sought out problem-solving man. There were lots of quiet spaces around him to hide in. My health worsened, still.
I returned to Carleton for my final year pumped up on 80 mg of prednisone and worries I couldn’t finish. When we did our honours research project together, problem-solving man carried the heaviest load so I could focus on graduating. He must have wondered how he got the job as my caregiver. It must have been my survival instinct.
When we ended up 3,000 kilometres apart after graduation, I needed to know he was at the other end of the phone line. He kept taking my calls.
The velvet rope
When he finally arrived in Toronto, I moved out of my small co-op loft into a large two-bedroom apartment in the Beaches. I filled the new place with three years of my busywork and striving.
The paintings on the walls, mostly of confined women hold back the darkness, were in part a product of art classes I took at George Brown College. In the second-bedroom, I set up my sewing machine, used to make suits with pillow-sized shoulder pads and dresses styled from patterns I’d designed on newspaper. I stacked dozens of books on Ivar shelving after having read my way through multiple interests: self-help; French and American feminist tomes; Russian authors; and pop science, from Stephen Hawking to Gary Zukov.
I placed my meditation cushion near the front window. Lake Ontario was at the end of the road.
For a time, we actually did live together, but not long enough to know if it was a good idea. We played on his corporate softball team, visited his family and went for walks. None of it really felt like me, but I relished the feeling of safety that problem-solving man brought to my life. Perhaps that wasn’t enough to build a relationship on, but I was enveloped in the narcissism of illness and fearful another flare would strike at any time.
At work, I was determined to find a job that was more predictable and meatier. I applied for one beat reporting job after another, first education and then environment reporter. If I got either job I would have an area of specialty that I could dig into, and perhaps more stable hours. I didn’t get either job. Instead, I was assigned another cross-country Royal visit. My editors didn’t see me as the beat reporter type.
When I landed on Prince Edward Island, I was welcomed into the world of Fleet Street Royal reporting. The jaded veterans convinced me to follow Prince Andrew and Sarah Ferguson, the Duchess of York, as they moved through the throngs of well-wishers, writing down what they said and reporting back. The Fleet Street crew wanted to know what Sarah Ferguson said about her baby, Beatrice, who she’d left behind in England and was getting front-page grief over.
I could never predict what the Brits would write or if it would be accurate. I got a call from my news desk one night after a story went across the pond with the headline, “Ten Thousand Frogs Boo Fergie.” My editor wanted to know how I missed that story.
“But only a few people booed,” was not a good enough response.
Another Royal reporter wrote that a Quebec folk singer insulted Fergie by singing to her about oral sex, which according to Brits is what “la langue d’amour” means. I didn’t get that story either.
Andrew Morton, not yet the famous Princess Diana biographer, explained to me that he specialized in “lateral” reporting. He’d see what everyone else was writing and take a step to the side and look at events from a different vantage point. A vantage point that only he had, it seemed. While the travel was interesting, the challenge of writing from behind a velvet rope was all in word-choice and imagination.
I returned home to begin my life of cohabitation, just as problem-solving man was packing up.
He’d been temporarily transferred to Ottawa and we continued to operate as though we were building something, as though a relationship launched in illness could survive. This is something that is never talked about when you’re first sick or after. How to have or maintain a relationship? How to maintain your dignity when you’re not in your right mind. Years later, I pled with my doctor not to raise my prednisone dose because I was a parent and didn’t want to subject my children to my agitation. It was an uncommon request but oh so necessary. By then, I fully understood my new operating instructions.
Back then, my busywork and striving continued. I took French classes, read about Unified Field Theory and pursued investigative projects, hoping I’d vault over the velvet rope.
I still had no idea if I was healthier and happier in the quiet spaces.
NOTE: I took a month-long hiatus from this blog because it took some time to figure out how to continue writing about work and chronic illness without contextualizing with crucial personal relationships.