Friendships change when one of you gets sick…
Duncan Sinclair calls it “one of the most compelling of the many stories I know.”
“It is the story of an illness written by a very good friend who died just recently, Susan Dick, a Professor of English, Fellow of the Royal Society, and one of the world’s leading experts on Virginia Woolf ….She lived across the street from us for many many years.
“One of Susan’s doctors, her respirologist (a doctor who specializes in your breathing), was a former student. They were very close. She cared for Susan in – well, at the darkest periods of her illness. She described Susan Dick as ‘this little gnome-like figure, who was transformed when speaking about Virginia Woolf – she just became incandescent.’”
Duncan Sinclair is a distinguished Queens University professor in Kingston, Ontario. He served there as Dean of Arts and Sciences and Dean of Medicine; and Vice-Principal in two departments. He’s been made an Honorary Fellow of the Royal College of Physicians and Surgeons and been Director General of Program Operations at the Medical Research Council of Canada. His insights often come from being immersed in spheres familiar to physicians – but Susan’s illness was about to deepen his commitment to a People-Centred healthcare model from the perspective of a patient.
Dr. Susan Dick had been born with a condition which twisted her spine and partially compressed her chest cavity. But Duncan’s gifted, intensely private friend had apparently gone “for years with very gradually increasing numbness, perhaps some ataxia (muscles refusing to obey), that if a watchful person, not necessarily a physician, could have seen these changes and recorded the impact of them and said ‘There’s something going on here that’s worsening,’ perhaps that person could’ve referred her to specialist care earlier.”
Duncan is speaking of the team approach in People-Centred healthcare. The job of some team members involves freeing up the physician’s time by getting to know patients on a personal level. Someone like this would have known that “because of Susan’s condition, breathing was always a bit precarious. But there was not a real team in place to have somebody available to call her frequently and ask ‘How’re you feeling today, what’s happening?’, who had the incentive to engage in early detection of problems. So Susan’s problem, as with many, progressed to a point where it was serious.”
The distinguished Woolf professor ended up in Intensive Care, muscle control nearly non-existent, a tube implanted in her trachea while a machine breathed for her. Diagnosis undecided, for months Susan went downhill, at one point not expected to survive. But she rallied – probably in no small part thanks to her devoted friends.
“I frequently would go in to the hospital to visit her, and it came that she depended on my wife and I in many many ways,” says Duncan. “We got to be very close. I took on the role of her counselor. I didn’t really have to advocate for her because her condition advocated for her. And she didn’t really need advocacy as such –
she got excellent care. But she needed a confidante.
“I was Dean of the Faculty of Medicine at the time but had responsibility for recruitment of people whose job it partly was to staff the hospital, and I knew very well all of the physicians and a goodly number of nursing and other staff. So to some degree Susan looked to me as a knowledgeable advisor. I was not nearly as knowledgeable as she thought! But this imposed on me the task of finding out what was the best advice. I was there in some cases as an arbitrator with some emotional commitment to the patient.
“After months, Susan could go off her breathing machine for brief periods, but the tube in her throat, to which the machine attached, had to remain and she was still unable to speak. This was very isolating. So Susan’s respirologist and former student hit on an idea. The physician brought in an old-fashioned typewriter. On this antiquated machine Dr. Dick began to find her voice again, writing letters to friends and even a diary. Out of those laboured typings rose Dr. Dick’s moving personal essay published a decade later in the Queens Quarterly.
“In that article Dr. Dick conveys very poignantly her loss of what she refers to as her ‘several selfs’ – the compartments in her healthy life in which she was variably a scholar, teacher, shopper, householder, etcetera – as she became a patient, completely dependent upon others for every function, for months on end.”
After ten months, Susan’s diagnosis arrived about the same time she was able to leave hospital. “She had,” says Duncan, “a very atypical form of Guillain-Barre Syndrome, very hard to diagnose.” Though still adjusting to ongoing new physical limitations, many of Susan’s lost selves gradually returned. She would take part in several more distinguished literary projects on Virginia Woolf.
Susan Dick passed away in December 2010, well after the onslaught of her illness. “There’s going to be a reception and celebration of Susan’s life, and I told the organizer, ‘Knowing Susan, she would’ve dreaded having to go to it!’” Duncan laughs. For her friends, Dr. Dick’s personality, and her brave battle with an illness which might have been caught sooner, have left special legacies to accompany her scholarship.