Category: Writing

Many’s the year that plans for the summer holidays get diverted or rearranged. But last year it was more like my entire summer got prorogued. Instead of writing away at my cabin-in-the-woods on Gabriola Island, I spent two months tethered to an IV machine dripping 303 ml of pure penicillin into my system each day via a tiny, blue tube, 42 centimetres long, fished through a vein to a position just above my heart. An infection in the knee no one can explain. Repeatedly they ask if I’d had an insect bite, a cut or injury of some sort until I begin making up stories: I’d aggravated the knee driving an old half-ton truck with a stiff gear shift; I’d taken up break dancing, gone on a bender. In the end, the orthopedic surgeon admitted that a third of the time they haven’t a clue how a joint suddenly gets infected. But their best guess is my arthritic knee started it off — never mind neither the knee nor I had any inkling of the arthritis part, not that we are experts. One thing led to another all the same, and did so extremely quickly.

It arrived out of the blue, in other words. Positively inattendu. And the blue moon came in August.

I was in the hospital four weeks. After a night in Emergency, I was sent upstairs and into isolation. I assumed this had to do with the knee infection. Not so. It was the superbug I’d caught in 2009 ringing the alarms, an antibiotic-resistant staphylococcus infection (MRSA) still detectible in my system though inactive. It meant hospital staff had to suit up when they came into my room. And this delivered — I slowly realized — a degree of protection from the general swill of bugs circulating outside my isolation unit. Isolation goes both ways, you see. Bottom line: The Blue Moon that gave me Strep B thought to include a private room.

There were two operations before my knee was clear and I was mobile enough to be discharged. Back I went to Gabriola equipped with a portable IV pump as there was another four weeks to go on penicillin. My friend Sandy took me in for the duration though neither of us knowing what that was going to mean. August was rehab month undertaken in the shade of an elderly cedar tree overhanging the porch outside Sandy’s back room.

That whole time I felt I had a handle on things. On what was happening to me, and what I needed to do to help the process along. In reality, I had no idea what kind of trouble I was in. I was a total bust as an advocate for myself, never asking about the dangers I was facing. No one tells you when you are having a brush with death, by the way. The infection that lodged in my knee and slid down into my calf could have gone very badly. Like, spread through the blood stream into bone, kidneys or the heart, wreaking permanent damage. So when the doctor came to tell me that the tests clearly showed the penicillin would work, I first noted they were deploying the heavy artillery, and second that the news was a Big Thing. He was beaming as if delivering a death-sentence reprieve.

A few weeks later, another doctor commented that I had excellent odds for making a good recovery. “You’re young, healthy and you have your leg,” he said. He also was beaming. So the narrative was there, if buried in daily details. (Have my leg???)

When I hit the hospital my first thought had been Thank god for Tommy Douglas. How inestimably awful to be sick and out-of-commission indefinitely knowing it was going to ruin you financially. My second thought was Thank god I got the first chapter written. Subliminally, I was not thinking about chapters or books. I was on the road to an unknown destination, and relieved to be with people who knew what to do and whose job it was to do it. Indeed, up until the last few days I was deliciously content to be exactly where I was. In hospital. My body understood even if I didn’t. Chapter two could wait.

The present takes over. It became a near full-time job just going for tests, having vitals checked, visits from the physio, the hospital GPs and the lab wanting more blood. I was surprised at what was happening to me, alright; especially when I realized, for example, that I’d not walked in two weeks and didn’t know when I would again. I was also bemused by my placid reaction. Aware at some level, that I was making the best of things; like you do when waiting for the storm to blow itself out so you can continue the hike.

When people talk about their experiences in hospital it is often about the large amounts of time spent waiting — for doctors, for test results, for the clean sheets to arrive or the nurse to return with the tramacet. On a more philosophic level, they talk about living in the now, a day at a time, which is probably inevitable. Pain does narrow the focus. In my case, the body was putting everything it had into battling the huge infection, while accommodating a massive onslaught of penicillin. Within three weeks, I lost 15 pounds and became aenemic

Without thinking about it, I turned my “isolation unit” into a cocoon. I was not insulated from what was going on out in the outer world; I listened to CBC-1 continuously in the first days, I had my iPod, and I talked to people by cellphone. Eventually, I could read again, and I added Radio-Canada (especially on Sundays) and CBC-2 to the radio roster. But it was only when someone asked, “I assume you have a TV. How about wifi?” that I realized how I’d actually constructed my environment. I heard myself answering that I couldn’t bear having either.

My connection with the world became exclusively aural. I felt safe there. It may have been all I could deal with. Many called in to see how I was and send encouragement, and a small army of stalwarts did so regularly: Fauzia, Feldman (for the Carnivores), Johnny, Patrick, Jane, Lillian, Ramona, Mai, and Zia.

How do you describe the experience of being shut away in an institution? Even when it happens for life-saving, non-punitive reasons and everyone treats you well, trauma is involved.  My friend Betsy likens it to “being dropped through a trap door into another narrative”. Alice lands in ER. To me it felt like arriving in a parallel universe where everything is familiar yet unreal, and you have to figure out why. It’s like following a plot that morphs silently from fact into fantasy. I can’t entirely blame the drugs despite the fatigue and depression they dragged along with them. But I know I was on automatic pilot, tightly focused and avoiding the big picture as if life depended on it.

I deeply suspect my brain (the organ) had taken over mission control. It was for sure rerouting physical resources on a massive scale and I was incidental to that effort. It made sense not to involve me. By the same token, I’m happy I didn’t get to see the big picture until it didn’t matter anymore. It would not have helped my spirits to have known all the possible ways Strep B, unstopped, could hurt, maim or kill me. Ignorance definitely has its moments.

Four weeks in Nanaimo General and I wasn’t bored to death. I was sick but not usually too sick to talk, so I interviewed practically everyone who came into the room. Cleaners, student nurses, porters, the meal-tray deliverers (hi Denise!), nurses, doctors, physios, and nurses aids. Add in the technicians who did all the ultra-sounds, CAT scans, bone scans and x-rays and I probably talked with 100 people or more. With their individual and often personal stories came a picture of the world they work in.

I have had to stay in hospital only once, but I’ve had a lot to do with hospitals (and nursing homes) looking after family and close friends who’ve ended up there. To tell you the truth, my experiences have been overwhelmingly positive. Which isn’t to say our medical system is faultless, or anywhere near it, because it isn’t. But it does work in the main, especially in crises, and it works because of the front line human beings who make it work. We don’t often acknowledge this.

I could go further. The care I got was delivered with patience, accompanied by acts of generosity that went way beyond the job description. There was even a fair bit of rule bending. For example, the technician, who made a point of briefing me on a rather frightening test that had been ordered, explaining what it entailed, and promising to be there for it should it happen (it didn’t). And the nurse who got me a latte on her break from the café downstairs. And this is not to mention the unexpected hands-on care of my (count-em) two orthapedic surgeons. First there was Dr. C. who when I queried him about what he’d done so the incision in my calf was never painful answered that he’d gone in with his fingers, manipulating between the muscles to slip out the abscess. He found a way to fool my quivering flesh into believing it had not been traumatized. And then Dr. S who came in the first two mornings after the second operation, to check the wounds and change the dressings himself.

For weeks I watched these people trying to do their jobs, working around the dysfunctional parts which, so far as I could see, had mainly to do with counter-productive administrative decisions. Like closing the pharmacy at 6:30pm. A few days in and it became apparent I was allergic to the detergent used by the (contracted out) laundry service. So sterilized linen was ordered. This was delivered the next day in a huge package containing sheets, pillow cases, towels, and gowns but no bottom sheet. The second package didn’t have one either. Thing was this laundry service couldn’t or wouldn’t deliver the sheet singly. You could only get the complete package. The third time, we scored, but this took two whole days, a silly amount of the nurses’ time, and it left my room looking like a linen closet after a wind storm.

Then there was the poor doctor who had to get me into the out-outpatients program to support the portable IV system. The problem there was the absence of doctors on Gabriola Island with hospital privileges who could provide back-up. Dr. R came in on his day-off to start the campaign, and spent many hours on the phone over two days ’til he found someone in Nanaimo. Reporting this to me he wasn’t beaming, though he was visibly relieved. He left remarking he rather deal with a heart attack than have to deal with bureaucracy.

****

Hospital food is an overworked joke. Living the joke makes you think about it, though. Like why? Haven’t any of the good people running the show ever been here around mealtime? As with laundry, it becomes obvious right quick that out-sourcing the food service delivers profits to someone somewhere, and food trays that make the ill want to vomit. (Exactly what I overheard another patient saying on the public phone across the hall.) Admittedly, once a day the kitchen sends in something genuinely nutritious and enjoyable with no added salt and/or sugar whatsoever. That would be the oatmeal porridge at 6:30 am. Everything else is inexcusably unhealthy and often inedible. Ersatz egg dishes with enough salt to melt a glacier; tinned sugar syrup with a bit of mushy fruit in cubes; un-ripened pears that stay rock hard until the day they turn black.

Eventually the Dr. G got heavy with me about the food thing. What was I going to do for protein? We agreed on cheese and peanut butter. So the next day, the tray included 43g of processed cheddar encased in plastic, and a single-serving (one tablespoon) of Kraft peanut butter — along with a rice curry that doubled as a laxative. (And here I thought no one could ruin a curry.) In my case food supplies were a ferry ride and five hours away, yet Laurie, Lindsay, Isabel, George and Kit managed to keep me in yogurt, cheese, fruit, nuts and sliced meat for sandwiches. Patients, I learned, are actually allowed to keep perishables in a fridge in the kitchen, an arrangement that I took as something of an admission. Expecting sick people to make do on crap food requires an escape hatch somewhere if only for those determined enough, and with friends and family on the outside. Personally, I’d prefer an up-front notice. Patients are advised to bring their own food.

* * * *

There’s one notice I did see. Everywhere. The was one about foul language and abusive behaviour not being acceptable, about verbal threats and acts of violence possibly leading to removal or prosecution. There you have the other side of the story. Angry, and demanding patients. People out of control with pain, or fear. I spent two days on the geriatric ward when I was first admitted, and got a load of what happens when a stressed-out elder, no longer able to cope, ends up in hospital. One had nurses on the floor searching for shoes under her bed, and fishing aids hearings out of the sink, fetching food and fixing the phone. The angst was palpable through the curtains. Upstairs on the orthopedic floor, I listened to the old man across the hall banging the railings of his bed, yelling for his wife and threatening to get out of bed. Eventually a nurse sailed in to calm him; explaining, again, where he was and why.

So I come back to basics. What makes our health system work are the people working there. The majority who love what they do, and are willing (and somehow able) to put up with the stress of administrative support systems that don’t actually support them.

If my first thought when hit Nanaimo General was Thank God for Tommy Douglas, and my second was Thank God I got the first chapter written, my third thought was a Holy Shit. It came after I had been there a couple of weeks and I tumbled to the idea that OHIP and my extended medical insurance not not cover everything. That was the day the head nurse popped in to see how many outlets my room had for oxygen. More than enough, apparently so I was going to have to move. Did that mean being downgraded from a private room? If so, what was I covered for? Not having my files with me I called my insurer, and punched in Jason’s local. He picked up the phone. I filled him in on the situation, he quoted back the coverage and said he’ll get back with more details. “Just call any time, and here’s my cellphone number.”

A couple of hours later, a pot of yellow flowers arranged in a huge yellow coffee mug with a happy face on it arrived with a note saying, “Stay positive and strong. Hope this puts a smile on your face!” It did. It was from Jason and the AFBS. That’s the insurance program run by ACTRA, the TV and radio actors’ union which has collaborated with other smaller unions like mine — the Writers’ Union of Canada — to offer health coverage to other self-employed artists. I was moved to another private room and remained in isolation, and didn’t hear anything more about coverage until I was discharged. The nurse giving instructions on how to work the portable pump and reload the bags of penicillin suggested I should check with OHIP to see if they pay for the drugs I’d be taking intravenously for another month, and the Community Care nurses who’d be checking on me every three days. If they didn’t, I could well be seeing a hefty bill down the line.

I was stunned. My heart sank as I knew I was in for several days of bureaucracy wrangling. Bottomless phone conversations with social workers and administrators, plus backup conversations with Jason. Not exactly what you need to be doing as you’re getting over a catastrophic infection. I discovered that no one in the hospital or the bureaucracy actually knew the answer to the coverage question which is complicated exponentially by (a) differences between provincial systems, and (b) the various side-agreements between them. (Did I know Ontario stops paying for seniors’ drugs at the provincial border?) Certainly everyone on the medical side, doctors and their assistants, specialists and theirs, was surprised to learn I might have to pay for my out-patients care — set up for the sole purpose of getting people out of hospitals to save money! They’d never heard of such a thing.

Eventually I ascertained that the penicillin would not be covered by OHIP once I left hospital. But was by AFBS, up to $3000. By then I was curious. How much was it going to be? Could it possibly be more than that? The hospital pharmacy scratched its head for several days and, when pressed, finally declared the Penicillin didn’t cost enough for them to spend the administrative time billing me. As for the nurses, the social worker stated I would absolutely would not be covered, that I’d have to hire privately. The community nurses, however, were absolutely sure I was part of their program. (No bill has yet arrived, so it appears they were right.) Apaprently, it paid to ask questions. It was exhausting but when I asked for help I got it, and was able to make it through the thicket of conflicting rules unscathed.

Conclusions? If you need to be in hospital it not only pays to bring your own food, it pays to have an insurer like AFBS who answers the phone (and sends flowers). Most of all, I think, it pays to have your faculties about you, to speak English and the strength to ask questions. My Blue Moon luck was that I was basically healthy and in good shape when I landed in hospital. And once there I was neither a difficult case nor a demanding patient. I had a lot to fight with.

When my dad was dying, I slept over nights in Intensive Care during his first days in hospital. He’d had a stroke and was breathing with a respirator. After several days hooked up, he decided to go for it without support on a ward to see if he could make it. We had two weeks with him there before he died, and for two weeks I watched him interact with the nurses who came every few hours to clear out his lungs — greeting them by name, chatting about the countries they came from, thanking them. We read Alice in Wonderland, and Thomas Gray’s Elegy Written in a Country Churchyard with him, two favorite books he reread regularly. I played him music: Brahms, Albeniz, John McCormack.

Those nights alone with him in ICU, I remember especially. Listening to his apnea-belaboured breathing, the darkness lit only by the green glow of the machines measuring his vital signs. I’d get drowsy and drift off remembering the last time we’d done this, when I was sick with TB in the Toronto General, and he came every day to be with me. That was forty-five years ago and he is long gone now. Yet, high on penicillin and infection, time warping, emotions raw, I dreamt of him and startled myself by repeatedly turning to greet him when the door to my room swung open.

One night, I woke from a deep sleep aware there was someone in the room. I been awakened, but not in the least abruptly. The only light was the phosphorescent glow of the machine feeding me penicillin so I could see little. But I could detect a figure standing by my bed at a discrete distance. He scarcely moved and was speaking to me in a quiet, assured voice. It took a long minute to pull myself into semi-consciousness and pinpoint who he was — not my father, but the doctor in charge of my medical team. I’d met him twice in daylight, and remember brown hair and a slight build, neither visible at that moment. It was the demeanour I recognized. Unassuming, comforting.

I remember saying something to him about not being able to do interviews at midnight… and apologizing. I said it twice. He said he would come back another time and faded back into the dark. I fell back into sleep. The next morning I awoke inconsolable. I’d been told the doctor did his rounds at night, so I should not have been freaked. Nevertheless I spent the day weeping on and off; even had to call in morale support. At the time, I put it down to the shock of the doctor’s unannounced appearance. Now, I believe it was the aftershock of not being frightened when it happened.

Truth is, I’ve no idea how he did it. Woke me up so gently it felt like being carried into wakefulness rather than being forced out of sleep. I fairly floated to the surface. Once awake, I’d no idea what territory I was in, and didn’t much mind. On some level I was back in ICU with Dad, listening to the noisy silence, feeling the world contract, wondering if death comes on the exhaling or the inhaling breath.

I slept fitfully over the next several nights, returning again and again to an image of the Angel of Death. I thought of Milton’s Paradise Lost and the captivating lines he gives Lucifer which we fall for every time. “Better to reign in Hell, than serve in Heaven” Lucifer. The bringer of light. What would the bringer of dark be like? He too is an ambiguous figure; equal parts disturbing and fascinating, good and evil. In my imagining, his wings are thick and strong and made for silent flight, more owl than eagle. An intimidating character for sure, but not necessarily menacing, not always horrifying. That’s the paradox.

A few nights later the doctor returned at exactly same time: ten minutes to midnight. In spite of my request that he see me in daytime. I was partly awake this time and the light was on — struggling as I was to reattach the IV machine I’d unplugged for a trip to the bathroom. So we spoke. He outlined the plan to keep me on antibiotics for five more weeks. I wondered vaguely where I’d stay all that time.

I admit I didn’t understand his insistence on seeing patients in the middle of night. Nor did I understand why I was so undone by it. I did understand the good doctor was everything you could want in an infectious disease detective : meticulous, suspicious, over-cautious. So I continued to be perplexed by the fact I’d not been frightened when I awoke to find a strange man in my room. Until it occurred to me I’d been catapulted into a strange and quite exceptional space, one I’ve only experienced once or twice before when I’ve felt I was operating in two places (or memories) at once, as if the past flips into the present. I’m not sure what to call it. Waking dreams? Sleep-reverie?

Looking back, I can’t say for sure who was in my room that night. An angel come to say it wasn’t my time? My father conjured in dreamtime, and dragged into real time? The grandmothers and grandfathers taking care? There are many narratives. But if there was a moment when I finally tumbled to the gravity of what I was going through, this was probably it.

Wherever I was that night, I am grateful now that I was woken for I can still call up the exorbitant sense of well-being I felt. That lovely deep and seductive calm.

I left Nanaimo General on a blinding summer Monday, the second last day of July. The drive down to the ferry dock and the trip across to Gabriola was ecstasy. Like seeing in colour after a month in black & white. The mountains back on the horizon, the salt smell of the sea in my nose, the heat of the sun on my back. Sitting in the truck, licking a chocolate-coated ice-cream, I knew I’d made it back to the land of the living.

Sandy was waiting. I landed in with the bags of still-good food, medical supplies, notebooks and radio, elated and exhausted. I was just beginning to get the measure of what being “out” felt like. Sandy calls it ‘de-institutionalizing’. She’d fixed up the back room, installed the queen sized inflatable mattress with tons of pillows, set up chairs on the porch, and put out some detective fiction. For good measure, Cathy and Barrie who appeared on Saturday morning for coffee, came bearing more paperbacks.

Of course, it was a huge relief to be back on familiar ground. Only there was a lot unfamiliar about it. To resume responsibility for basic living was to discover just how physically constrained I actually was. I quickly found ways to improvise, but what I couldn’t do was sobering. Dropping by the Village mall the next day I had my first ‘My-god, look-at-all-those-people-who-can-walk’ moment. Then came the first stern conversation with myself. This is a retreat, I said. A rehab retreat in a cedar tree with one of your oldest friends as guardian. But, it’s still a retreat and that requires discipline. No one does exercises for you.

Laurie supplied technique: move and hold on the exhaling breath, use soup tins as barbells, reward yourself. Stuff he learned recovering from his fall off the roof two years ago, including the mantra: Keep at it. That was a very hard thing to do at the beginning. I tired easily. Getting up and moving around was fatiguing, the penicillin was fatiguing. Special events like washing my hair left me limp, and limping to bed for a nap.

Sandy wasn’t one to coddle. She checked in on me at night to see if I needed anything before turning in. Took care of laundry, shopping, cooking though after the first couple of mornings she left me to fiddle with my own coffee. She schlepped me over to D’Arcy’s for physio, took me to Colleen’s for a pair of boots but otherwise left it to me to it. If I couldn’t manage the bathtub keeping the right arm and left leg from getting wet (!), I’d ask for help. (And I did the first time.)

That was the deal. And there was more. Getting my weight back. A transfusion had kick-started recovery, but I was so freaked at the sight of myself in Sandy’s bathroom mirror, I resolved not to wear my glasses in there again until I’d gained ten pounds. We began with regular dinners, soon ditched in favour of power grazing through the day, cooking some fish or meat every few days. I’d start with oatmeal porridge in the morning, and progress through the day with bananas, peanut butter, nuts and raisins, peaches, and watermelon, with snatches of chocolate, and late-night ice-cream. The all-out campaign went so far as steak. It produced half a pound in the first week, a couple more the second. I began pumping soup cans with both hands, and doing knee bends as we sat together on the front porch.

Sandy guarded the gate; kept people informed but limited the socializing. Kids, she noted, naturally know to restrain themselves when they’re sick; grown-ups don’t. But I needed to see George and Kit who had let me move into their downstairs study for a week when I started having serious trouble, fed me from their garden, cheerfully drove me to Nanaimo twice. (This move was triggered when neighbour Dave had to carry me upstairs on his back so I could take a salt bath — sipping some of Ardyth’s special tea — in their tub.) These friends kept me going until Lindsay just called it. “Call the ambulance and go to Emergency…It’s the tail end of the long weekend, what hell’s going to break loose already has.”

* * * * *

Personally, I can’t imagine having someone land in on me for five weeks. Never mind taking on someone needing care after a life-threatening illness. On my side, knowing her as well as I do, I wondered how Sandy would be able to stand the disruption of her solitude and routine. She had rewrites to do on her novel. On her side, though, there was no hesitation. We were in it together.

So we had to work out a rhythm. Match our rituals and accommodate the foibles. When the aroma of her morning coffee wafted back to my room, I knew she’d be heading out to the porch with her book to sit in the sun and read. (And that she’d follow the sun down the length of that porch and back over the day. ) I took longer getting up, doing exercises in bed, and my meditating. In place of my usual tai’chi outside, I exercised sitting on the little back porch.

Foibles. Moving in on people, you do get to see their foibles. More significantly, you get to see your own. My tendency to leave fruit to eat until it’s very ripe, for instance, not noticed until Sandy complained of the smell of decaying bananas. She keeps bread and peanut butter in the fridge, I like them at room temperature. She, like everyone, has her way of organizing things in the kitchen. I filled the place with empty cans of Santa Cruz juice, easily carried about when a glass wasn’t. There were a few disgruntlements. So we settled on a rule: one grump a day, and no apologies. Not one grump each — one between us.

My energy finally began returning. Not consistently, but noticeably. Sandy commented that I’d progressed from hobbling to limping along. I was never sure whether to believe her, but the only measure I had of any progress going on was listening to her and Laurie. I’d little ability to see myself or to track improvement. I was in limbo, actually; waiting out the Pen G. for when it stopped, my body could finally heal. I had morning down-spells that lingered, and baffled me. A depression which came with my regaining perspective, I figure, as well as from the IV. For the first time, I thought about the fright I’d given those dear to me. And the fact that they got to live the nightmare while I was in my cocoon.

Shortly after I arrived, Sandy strained her left arm and ended up with a splint, having to do the same routine with ice packs and exercises I was. We joked that between us we had one functional set of limbs. We had long conversations in installments, and we realized this was not just a trial to get through, it was a special time together. Our friendship would definitely survive it.

We hugged and laughed when I left. We said we’d miss each other, and laughed again. “It’s been grand having you here,” she said glowering at me, “but don’t ever do it again.”