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Wednesday, March 30, 2011

Volcanic Eruptions

The sunshine is full and warm, streaming through winter-speckled windows. It is one of the first real spring days we've had in a while and I nearly feel guilty for not stepping out, but fatigue weighs me down.  No Workout Wednesday today. I was too afraid to be cut off from the ring of the phone even though I've never missed a call with earbuds plugged in.

My sister seems to be near her end. But this is my sister, so nobody, not even doctors well-rehearsed in such matters, is willing to make predictions about her.  We've all come to see her as immortal, having survived so much over the decades of ill-health.  She always pulls through. I am reminded of the birthday card I bought this year for my husband that held a large button pinned to the inside. It declared: "I've survived damn near everything". I made him wear it all day.

But this seems grave this time.  Not that it hasn't been before but this is the first time she has retreated this far.  She has been unconscious since yesterday afternoon after suffering a series of violent seizures and, some are guessing, a stroke or two which might be the cause of the seizures. Or, they speculate, maybe she is suffering the effects of the abrupt withdrawal of an anti-depressant she's been on for a few years. She has been on IV for over a week - no food - after something left her incapable of swallowing.  But we've seen all this before, just not this severe and not with the loss of consciousness. She seems to be in a state of constant seizure, rigid and unresponsive, a life-threatening condition called status epilepticus, I believe

My niece is keeping me well informed during a nearly constant, solitary vigil at her mother's bedside.  She sounds strong.  She's coping well, it seems, but then she has had years of practice.  Her mother first fell seriously ill two weeks after her birth.  She is hesitant to declare it is nearly the end but she is bracing herself.  We all are.  How is it after years of preparation for this possible day of departure, we are still not ready?  At least, I am not.  Sadness bubbles up like hot lava all day long.

Last week, when we heard Ann was back in hospital, I momentarily entertained the thought of a hasty trip to see my sister in Vancouver.  One of our daughters was to come home for the weekend. I could leave Saturday morning, be back on Monday when she had to return to her new home. Two nights of looking after Dad.  I even went so far as checking flights and hotels, not really thinking this could actually come to pass. Yet I was feeling daring after, two weeks earlier, I had ventured out for my first successful evening of entertainment in a year and a half, with my very competent caregiver in charge for the six hour break. She was to feed Michael his supper, spend the evening watching a televised hockey game, then put him to bed, the first time ever someone but me would deal with that task. All went smoothly. It helped, I think, that I gave Michael no warning of this plan until the caregiver walked through the door. He seemed calm with the news that I was going out, except for a sudden concern about money and a momentary flash of panic in his eyes that seemed to ask if I was leaving him. I stuffed a twenty dollar bill into his wallet and went out to dine and chat with an old friend. I felt buoyed and confident this could be repeated soon.

But a weekend away could not be sprung upon him at the last moment.  Packing and preparation would tip him off, so I mentioned my wish to go. Immediate fear crossed his face, his silent panic quickly cancelling such a crazy idea. I reassured him I would not go and he seemed to forget about it instantly. I could not leave my daughter alone to cope with the insanity that would most likely befall her father shortly after my departure.  I know my husband too well to subject her to that.

My nerves are raw, intensified as well by unaccustomed disharmony in my family.  An angry and hurt offspring broods silently from afar, scorched by rare but misspoken, judging words from me over a painful personal issue. My apology hangs uselessly between us.  The imposed internet and telephone moratorium shrieks at me through the ether. I am chastened and destabilized.  Michael seems to know that this, more than all the rest of life's issues right now, threatens to unhinge me. There are frequent anxious glances in my direction.

I must be careful to rein in my own anxiety or we will be plunging into our own crisis again.  Two this week are quite enough.

Tuesday, March 15, 2011


Last week I had every excuse not to start work on this year's income tax forms.

Last week it snowed. And it snowed. Our thirty-plus meter driveway is well cleared by a contracted snow-plough operator but the last ten meters or so, between house and shed, are too narrow for the fellow to pass with his truck. That and the equally long or longer wheelchair ramp attached to a large deck, several sets of stairs leading from various doors, and a path linking them fall to me to clear. Arguably I could reduce my work and simply clear one doorway and the ramp but I have a mortal fear that fire or some other calamity might trap us in a part of the house where I cannot get out with a severely disabled man. I am extra careful.

I used to clear the entire driveway myself - by hand - but as the years progressed and I aged, my dear old dad bought me a snow blower a year or two before he died.  He hoped that the remaining offspring might take up the task and that I, at least, could be relieved of what he considered too much for one person.  I actually loved the work and took delight in the fact that I was the only person - and the only female - clearing my driveway by hand and doing so quietly. I hate the roar of the engines and the smell they spew into the atmosphere from my neighbours' driveways.  But the year we had over three meters, nearly four, of snow, I was damned glad to have that smelly, noisy machine. The offspring, by the way, are all but gone.

Unfortunately, arthritis has crept into my hands, leaving them swollen at the knuckles and, recently, quite painful.  I found out the hard way that the vibrations from a snowblower exacerbate the pain to the extreme.  I had to return to the old fashioned method.

Then one winter about three years ago, the children bought us that snow clearing contract. I had stubbornly resisted hiring one myself, my ridiculous sense of independence thwarting me. But when it was handed to me on a platter, during another winter of very deep snow, I was grateful. I have hired the same fellow ever since, contenting myself with the areas he cannot reach.

I sold the snowblower to a friend, hoping Dad wouldn't mind, resolving that once I can no longer do the small amount left to me, perhaps it would be time to sell this place. Last week I came perilously close to making that decision.

It's not that it was a huge amount of snow. Mercifully it came in several batches over many days, not all at once as it has done previous winters.  The problem with snow in March is that it is usually very wet and very heavy so that even a small amount on your scoop or shovel becomes a challenge. I had thought that, so far, we had had a relatively snow-free year, but as I pushed heavy loads up what had become nearly two meter high snow banks, I quickly revised that assessment.

By the end of it all, my body was tired. But what I find more difficult is managing to complete the task while caring for Michael.  If my caregiver is here, then it's easy to not worry, but if Michael is in the house alone, I am constantly popping my head inside to make sure he is okay, napping or watching television.

I survived the snow, of course, and probably became stronger for it, but I looked at my sedentary husband again and again over the week and resolved to get him moving too.  Over the past few months, his mobility has nearly ground to a complete halt. Recent swelling in his feet and ankles highlighted the potential danger of inactivity.  We try to get out for a short walk a few times a week but if the timing is off a bit, then we often get no farther than halfway down the nicely cleared driveway. A few times I have been able to lure him onto my elliptical machine, set at the easiest level, but after two minutes he is huffing and puffing, then he quits.  It's just not very much fun.

Last week I had a brainwave and set to work to find and order a small, inexpensive gizmo designed for disabled folks in wheelchairs.  It is a pedal machine with a very simple knob to adjust the resistance.  Michael can be parked in front of the television as always and pedal away from the comfort of the couch.

It arrived at our door last Thursday.  I had it assembled in five minutes and he set to work immediately.  I am a realist; I know Michael's interest will wane, but the first three days, he actually pulled the machine out himself and sat for thirty minutes each time pedalling steadily.  The machine can even be used on top of a table to give the arms a workout but that is slightly less appealing to him than using his legs.

The past few days he has not touched it much but, with the glorious sunshine and warmth, I've been able to drag him outside for short walks with only a few falls each time.  Perhaps the hint of spring in the air is motivating him and giving him strength.

The swelling in his feet has receded and there has been no further snow since last week. Revenue Canada and Revenue Quebec are not very seductively calling my name.

Tuesday, March 1, 2011


This story was written in October 2010 near the first anniversary of the journey described below:

It was to be an epic journey; British Columbia had been beckoning to me from beyond the mountains for decades.  I wanted to retrace the path that had ended there so many years before, forged by my family on our way to a new life.

My life began in the damp Midlands of England 54 years ago but my home was soon to become this vast empty country.  My parents, fed up with the privations of post-war England, or perhaps merely possessed by a sense of adventure, sought the proverbial better life.

Our feet touched Canadian soil in Montreal, the week-long ocean voyage leaving my father weak from sea-sickness and jubilant or nervous imbibing. But my mother's face beams in the few photos from that journey, her first respite from domestic drudgery since their hasty marriage immediately after the war.

In Montreal my mother's tall willowy frame, in a printed frock, patiently stands with her brood, awaiting the train to carry us to our new home in an unknown land. My father's presence only felt as the eye behind the camera lens, observing his family.

Two long days on that train. How awed they must have felt at the vastness of the landscape, the barrenness, the emptiness after crowded England. Mom was well used to train travel after years of wartime commuting, often in black-out conditions, awaiting the whine of enemy planes over industrial Birmingham. She took up smoking for those journeys, and knitting, often blindly working on some project through the darkness. I can see the glow of the cigarette in her mouth and hear the click, click of her needles marking time with the train. Did she knit across Canada too or was she content to let the experience go by recorded only in her mind?

BC was still nine years away. We first arrived in Medicine Hat on our way to Etzikom to a principalship Dad would never have dreamed of acquiring in England. But he had a restless spirit and over those years we threaded our way through small towns in Alberta: Smith, Grassland, Cold Lake, all of them exposing us to new cultures - ranch life, farm life, a First Nations community, a military base.

And finally the three day trek to the coast.  Mom, Dad and I drove, my older siblings now far away at university. Our Rambler station wagon was filled with necessities for six weeks until our furniture could find its way to Kemano, an isolated company town that finally promised the prosperity my parents had left England for.  All three of us were crammed into the front seat of our aptly named vehicle.  I remember my first sight of mountains, coming over the crest of the hill; ten years old and I was spell-bound by the majesty.

Years later I leave home tracing my way back to the East.  Two days of travel out of mountain-bound Kemano for a new life at university in Kingston. What I didn't know was I would never really return to BC, a hurried visit here and there, but nothing sustained. I wish I had known that. I might have taken in my last sights of the places better, stored them away safely, but I was cavalier, youthful, unaware of the fragility of those memories over the years.

I settle in Ottawa with my husband, my last visit to BC in 1979, thirty long years ago. We have four children; we build a life together. We are happy and confident in ourselves and our longevity. We are strong and healthy.

Then in 1994 there is an unraveling. Michael is diagnosed with Parkinson's disease, early onset, only 46 years old, still fit, vigorous, otherwise healthy. We cry, but only briefly. Both of us have inherited our parents' stoicism, work ethic, their pioneering spirits, and without really discussing any plans, we resolve to raise our children, continue the tangled job of life. Our children grow and thrive.

Illness is expensive and busy, four children even more so, and in the intervening years I have developed a pathological fear of flying, all of these factors conspiring against any kind of travel let alone a long journey back to BC. We content ourselves with boisterous caravan-style camping trips over the years. My sister, the only sibling to stay in the West, makes annual treks to Ontario, my parents, in retirement, having abandoned the outback for the first time in their Canadian lives to join my brother and me in the Ottawa region.

This same sister fights her own battles with illness. She teases Death so many times over the years but when she can no longer make her annual visit, when illness finally starts to win the war, I begin to plan my way back to the West.

We hear news that her time is drawing to an end and that of her husband too, her life-partner, her patient caregiver over the years of unrelenting ill-health. I must go.

I still cannot imagine setting off in an airplane; the panic invades my sleep. Besides, my husband's condition is now bad enough that I do not feel I could adequately give care while succumbing to fear.

Then I remember how much I love the train and excitedly plan our journey across this land. I summon my parents' spirits and strength. We will board the train in Ottawa, hop off in Toronto onto the cross-Canada train late in the evening, snug in a small roomette. Three nights on the train, then debarkation in Jasper where I will drive us out of the Rockies to Quesnel, my sister's home.

I work out all the details. Michael seems keen to go but dementia has crept in over the past few years, a nasty feature of an already devastating disease, and I notice that he is getting worse in the weeks leading up to departure. I start to have serious doubts about the trip. But my sister, I have to see her for perhaps the last time.

The day before and I am now alarmed. My husband is fighting with invisible forces. I book an emergency appointment with the doctor vowing I will cancel everything if he thinks it unwise to go. The Demons are wily and hiding so the unsuspecting doctor is cheerful and confident, dismissing my fears. Of course the train will be safe. No, you were quite right not to book a flight - very risky - the train is so calming and peaceful.

I am only slightly reassured by the doctor. I have seen my poor husband succumb to those dark forces in the past while hospitalized for a heart attack. I know that any change can unleash delusional paranoia but I talk myself into believing that since he will be with me, his touchstone in adversity, all will be well. I pack my diversions for a long journey, six days there and back on the train: books, audiobooks and a new knitting project, homage to my mother.

We are nearly in Toronto, the first leg of the trip, when my cellphone rings. Our youngest, left in charge of the house, reports that he is suddenly very ill. I can hear how ill he is, even frightened, or maybe that's just my Mother's Panic clouding things. But what can I do?  For now the draw of my sister is stronger and I have to obey.

Later that evening, on board in Toronto, I find our roomette impossibly small; with the beds down for the night there is barely room to turn around. I take the top bunk, leaving the bottom to my disabled husband.  I plug myself into my ipod and look forward to being lulled to sleep by the train, imagining this same journey 52 years earlier.

Early in the night the Demons invade. Michael cannot grasp where we are and what all the noise is.  Calming words from me have limited effect; he hallucinates wildly. He becomes paradoxically mobile, something I have now learned to expect when he is in adrenaline rush.  He is now immersed in some elaborate, imagined conspiracy and starts to hunt for weapons to protect us. I tell him gently that I must have forgotten to pack them. We snatch only moments of sleep.

Morning dawns and I look forward to a breakfast that I have had no hand in preparing but all my attention is on my husband. He seems normal but I know his roving eye is following unseen companions. His halting, mumbling Parkinson's speech confuses our table companions. They look away uncomfortably.  Conversation is stilted.

Our first full day is spent mostly in our room. Michael is ambulatory only a few hours a day with medication so I carefully tailor his drug regimen for optimum mobility at mealtime. The Panorama car with a full vista of the passing landscape is too far away for him to negotiate the narrow hallways so I content myself with watching the scenery from our own window. We are in northern Ontario, an endless parade of spindly conifers, rocks and small frigid lakes. We doze together on the bottom bunk, catching up on lost sleep. I knit a few rows of my intricate, delicate, cable-patterned shawl. The Demons are resting.

Nightfall. I slip away for a hasty shower, nervous about leaving Michael alone for even a few minutes. I summon the porter who promises to watch for me. All is well and later I settle happily into my bunk, anticipating a calmer night. Surely exhaustion will prevail tonight.

But this time the Demons are impatient and storm in as soon as the lights are dimmed.  Michael tries to flee what has become his prison cell. I fear he will hurl himself off the train so I lock and barricade our door with a suitcase. Mercifully his mechanical prowess has disappeared over the years of this ravaging disease and he cannot fathom the simple lock. Together we wage war through the night as quietly as possible.

A second dawn approaches and I weigh my options. We have one more night on the train before our arrival in Jasper.  My husband's eyes are ringed with fatigue and mental illness. Probably mine are too but I refuse eye contact with myself in all mirrors. I must make a decision now as we approach Winnipeg. With still a long journey ahead and then five days in the company of two very ill people, I realize we must disembark in Winnipeg and get home somehow. I consider renting a car to drive the long way back but the thought of being trapped alone with Michael's unpredictable behaviour is unbearable. I know we must fly.  The thought of death in a fiery plane crash is oddly less worrying than continuing this hellish journey.

We are ready to depart our prison as soon as the doors open at 8 am. The porter is immensely helpful for I am left to struggle with the wheelchair and luggage, but my husband is mercifully and suddenly calm now that he knows he is free and going home. We make our way to the ticket counter in the Winnipeg train station to negotiate a refund. I am prepared to forfeit it all, I am so desperate to go home, but I am touched and surprised that the compassionate clerk, on hearing my tale, refunds all but the portion we have already used. I am, I think, calm and coherent, knowing that any panic I might exhibit will only set Michael off again. He needs me to be serene at all times.

With money refunded we grab a cab and make our way to the airport through the wide empty streets of this prairie city. Our driver and I try hard to be cheerful despite the obvious madness that has invaded his car.

At the airport our only option appears to be to fly immediately to Montreal and make our way home from there, having missed the only two early Saturday flights to Ottawa.  A computer glitch forces an inordinate wait time for the hasty tickets we require. I offer full disclosure about our volatile predicament but suddenly am gripped with fear that they could refuse us passage. Michael is currently calm and lucid but feels a duty to inform approaching strangers of imminent danger at the hands of some terrible terrorist conspiracy. The flash of near panic across one face prompts me to grab his arm and admonish him to stop talking to people. He obeys.

We are offered a quiet resting place in the airline staffroom as we wait for the computer to be convinced to process our tickets.  With only fifteen minutes to spare, a cheerful young attendant rushes with us to the security gate, then to the door of the aircraft, where all have been apprised of our predicament.

I settle Michael into the window seat and myself in the aisle; I refuse to look outside. Michael is now as happy as a small boy on a new adventure. He has always loved flying, having travelled the world for his work as an engineer with the federal government before this disease robbed him of nearly everything. I brace myself for my first flight in thirty years, prepared for complete panic.  Save a few long moments on takeoff and a few longer ones on landing, I am prayerful but calm. It helps that Michael is positively beaming with joy.

The rest of the journey home is anticlimactic and uneventful. We arrive on time in Montreal, hop on the shuttle bus two hours later, arriving at the Ottawa bus station, then home-sweet-home, by late afternoon.  The only Demons who reappear  sneak onto the bus in Montreal but I have been wise to invite them to join us in the front seats, everyone else on board near the back. The final stretch of the journey, the car ride home, Michael is anxiously hiding in the backseat, certain we are under attack. My ailing son and I chat amiably in the front seat, careful not to acknowledge Michael's fear, and intent on getting this poor sick man home.

That  journey was over but not the bigger one that continues to move us in unknown directions. Michael's health declines ever so rapidly now; this disease seems to be taking its final hold on his body and mind. My sister miraculously still lives but her husband ended his journey with life Christmas day last year, exhausted from his disease and his onerous duties.

The return to the West was not to be, not yet, and my tangled knitting project has been all but abandoned for now. I pick it up occasionally but cannot complete it.