Comments Welcome: A Caregiver’s Journal (No. 4)

A Gratitude Flag






















It is a glorious shout of defiance that I have made in my own chest, in back wards and other gutters, during my worst defeats.

It can still stir spirit’s embers into flame.

But—is it adequate, now? Will it do for what I have seen, what I am seeing—now? The death by slow drowning followed by coma that is lung cancer? Or the far slower disintegration of Alzheimer’s, as natural and dreadful as the host of ravenous wasp larvae implanted in a paralyzed caterpillar?

For these, for now—the brave words must be modifed.

In times of stone, gauze has its blurring virtue. But needed as well are granite views. Stones to set amid the stone. As markers. As signatures of self.

All that I see can, and will be, taken from me.

Yesterday, two Marys. One, her suffering done, lowered by three pairs of hands into the ground. The other, still going with faltering steps over the Earth, her brain shrinking, her spirit swelling with assault, supported on either side by those she rains down minuses on, as if to sew a zero, a bag of blackness we can be swallowed by together, no one alone.

So what avails? Does anything?

To be a steadfast witness?

All that will be taken from you will be seen by loving eyes.

You will be helped until all help is done, and before and beyond that, witnessed utterly. A witnessing beyond mere observation. A being-with and going-together to the end. Your hand held and your going attended.

What is demanded of the caregiver?
Everything.
Are there limits to the asking?
None.
What is returned?
No less than is demanded.

The strange contagion of suffering and comfort, how they swap places constantly. Arm around her shoulder as she weeps at losses she cannot recall, then pats my hand to dry her eyes. An hour later it is I who am forced off the road by streaming eyes, who feel, at 2 a.m., on a shoulder of the 401, a sudden rinsed and ruined space, a raw clearing as of dawn over a battlefield. All exhaustion gone, and resolution renewed, as if the sorrowful hard 20-hour day were, not a crushing burden, but a rare exhilarating privilege.

And it is. In moments of mad gladness, I know this: a privilege. To be offered, and to be prepared by a lifetime to accept, the position of loving witness.

To plant this flag of gratitude.

Comments Welcome: A Caregiver’s Journal (No. 3)

Pebbles in the Stream

“I need to tell you that you are a good son, and a good person.”

L, in her kindness, may need to write the words—but how badly I need to hear them! The email is a glass of clean water I keep sipping in a dry, polluted zone.

It’s not exactly that I doubt it. I know that only a good son, a good person, would do what I am doing. Or, if referral is the best recommendation, put it this way: I am the sort of son, the sort of person, I would want as my caregiver.

Only—why is it so hard sometimes to feel good? To believe it all the way inside? The answers to that might be as deep and manifold as a life, but here are a few I know.

First is that a day of caregiving is made up of a thousand moments—it is a dense fabric of exchanges lasting from a second to a quarter hour—any hundred of which may be coloured by irritation, resentment, boredom...all the hues of bad feeling. So it comes to seem a hybrid, qualified thing. A quilt which, even if the overall design is good, has too many missed stitches and dull or plain ugly squares, to earn that open-vowelled epithet: good. (I tutor a boy who prints the word as four perfect circles, then adds the up-tail and down-tail at either end, leaving out the g’s curl so as not to jar the symmetry.)

No real relation is so simple as good. Good may suit a given moment, a cursory look. For anything sustained or scrutinized, it is too fondly round.

That is part of it.

But also—often I am just too plain exhausted to feel that I am doing good. Satisfaction with exertion requires a pause, a moment, after the breath is caught, to appreciate the effort expended. First, though, the head must be kept down, tucked inward over the heart to regain the spent strength. Until that happens—and there are days when no pause lets it happen at all—exhaustion takes all the space it needs, which is often all the space there is, leaving no room for anything else.

Exhausted, I am not good, no more than I am bad; I am not even I, quite, since I requires some corner of consciousness not given over to doing.

And—there is more. There is always more when you parse a common word.

It is hard to feel good about any efforts that are part of something producing so much suffering and destruction. I imagine a doctor treating wounds behind the front lines in a war. Can he feel good about the stumps he cauterizes, cleans and dresses—actions without which lost limbs would have been a lost life? (And the soldier screaming Let me die! I don’t want to live without legs!—that, too, forbids good, shoves it out of the room as an obscenity.) The most the frontline medic may feel is that he, or his actions, though they occur in a zone of deep wrong, belong to a stream that comes from, or goes to, a place of good.

At a given moment, he may be flailing, cursing the debris-choked water, fighting its turbid shifting currents, choking, even drowning—but he is in the right stream.

How can you pin a gold star on flailing in the right stream?

Because sometimes you just have to. Sometimes nothing helps but the simplest, most unmistakable murmurs of our earliest rewards.

Good person. Good son.

Good. The first, best prize. The relic in the deepest cave of self, wrested in how many pitched battles from the dragon hoard of bad.

Good.

The round bright pebbles, bathed by a crystal stream.

Comments Welcome: A Caregiver’s Journal (No. 2)

Trench Mouth

Whitman: I above all promote brave soldiers.

So do I. And I want to be one. And sometimes, perhaps often these days, am. Days will go by when I can fight in sweat and silence—without feeling the need to talk, except to myself, about what I am doing and how I am doing it. But then an un-brave need wells up in me to howl, to whine, to jabber at anyone about what I am experiencing. I can beat the urge down, repress it. Often I do. But when I do, when I shrink it forcibly back into silence, I feel it turn into something small but hard in its need, something sapping, even poisonous. Then the unsaid sayable becomes an animal, tiny but with sharp teeth and claws, that I have driven into a corner of myself. It will stay there, for now, but it can’t live there. Eventually it will have to force a way out, gnawing and tearing.

But there is this dilemma: how to give voice to my own suffering without violating the suffering of others?

Within true expression, there is no perfect solution. However much I censor and edit (and already in the first post I deleted more intimate glimpses that bubbled up), I cannot talk about my own life caring for Dad and Mom without trespassing, at least a little, on their lives.

I will try to avoid what seems too graphic, too intimate—skirting, as a sacred area sensed in the dark, what would shame or dishonour them, or others. I will fail at this sometimes. But I will try to use the failures to readjust my sense of too-far, my compass of decorum.

I will try to focus mostly on the feelings, thoughts and quandaries caregiving roils up in my life. But to do so without ever referring to the events of caregiving, the thousands of acts and moments that make it up, would be to make caregiving seem abstract.

And abstract is the very last thing caregiving is. It is such a relentless plunge in the real and urgently required—a kind of waterboarding of the necessary—that it can make the rest of life—the merely preferable, advisable, strongly needed: all that falls short of the absolute Do Now!—it can make all that abstract.

That is a very alienating thing caregiving does. To make the stuff of daily life, all that is not caregiving, seem like a hollow mask, a set made from papier mâché and poster paints. Or if the world stays real, it does so as a shell, a mere thin casing to hold caregiving itself.

For some months I had stopped seeing my longtime psychiatrist. The hour I spent with Lindsey, as helpful as I found it, made my day an hour longer, by delaying by an hour all that had to be done by day’s end. Just recently we resumed. Hour-saving ran up against “airplane survival” as advocated by Segbingway’s doctor. If you don’t keep your own oxygen mask in place, you can’t hope to help the passenger in the seat beside you.

That is my excuse, too, for when I say too much, for when my mouth runs away with me.

“Sorry, Mom and Dad,” I say silently, and sometimes aloud at such times, still speaking as if sitting with them in their living room, though Dad has been dead almost ten months and the house sold five weeks ago, “but I cannot help and honour you unless I sometimes pause and help myself, even at the risk of dishonouring you.”

Talk was the oxygen I needed. I’d lived so long in airless striving that I thought I had nothing to say. But my mouth opened of its own accord, and out the words ran. It was like a spigot of bitterness and disgust that only needed one small twist to gush.

What poured out that day was nothing that dishonoured Mom and Dad, not directly. That day, it was about the others—I will not name them here—who know what this fight is costing us, and me, whose duty by any reckoning is to help, and who contribute nothing of their time or energy or presence. Who know that we are floundering and will not reach out a hand or so much as a stick to help. Who will not even look on in sympathy from the shore.

They maintain a perfect silence. Them—the uncivil civilians—I won’t forget.

Silence is only brave if it keeps you in the war. Some soldiers, not the noblest, need babbling in the trenches.

Comments Welcome: A Caregiver’s Journal

The beach is open

Yesterday. A day off the day job. Meaning a longer and more arduous day—its hours expanded from 14 to 18 (2 on the phone, 4 on the desk, 12 on the road), and all of them, not just half, devoted to the more exacting and more equivocally paid tasks of caregiving.

So many problems to tackle—and so few (and those provisional) solutions. The money vanishing into thin air—$120 yesterday, $140 the week before. The dead plant’s withered stalks watered and repotted. The fresh blooms and their soil overflowing the garbage. Lost keys, lost names, lost things. “Broken” appliances, their unplugged wires dangling. Frailty that draws company, some predatory; weird talk, vacancy, that repels companionship, tries even love. Disorder permeating everything, like mildew.

Strange problems, some would say. And the fact that they are not, and in memory never have been, strange to me, must be in part why, more and more, they fall to my keeping alone. Estrangement from mind’s failings brings insulation—a comfort bubble, though hardly, even in my weakest moments, one to envy.

Driving home in the familiar slump of absolute exhaustion. Physical, mental, emotional, spiritual—if the compound seems to include something extra, beyond all these, it is perhaps because their sum total is so seldom felt with ordinary tasks, of ordinary duration. Like a hollowing out from inside. Like accelerated aging, a waning I feel as it’s happening (some kind of sped-up film of myself slowing to a stop—except I’m in it, not watching it).

Burnout. It sounds like what it is: a charred pit. Not, though, as is usually implied, a terminal point; rather, for a time at least, a scorched place with roots still glowing under the black ground, red filaments which a few hours sleep, even an hour to myself in a coffee shop, can reignite into spurts of treacherous flame.

Home. Segbingway has had a visitor to her new website, asking how she may follow her on Facebook. I feel a splash of happiness at this, but feel also how happiness cannot quite show clearly through the mask tiredness has made of my face.

It is not until the next day, today, sitting over People and uncompleted Sudoku for several hours in Honda’s service department—brakes, seals, timing belt blown early from all the driving—that I think of this blog begun three and a half years ago.

2009. Because it was begun on the first day of that year. No author listed, though over time the links to my books and talks made it clear enough to anyone who cared to know.

The first thing I did, that New Year’s Day, was to disable the Comments function. I could not have begun otherwise. What I needed, then, was a place to put messages in bottles and release them to tides. Naming my own beach, much less marking a way back to it, would have stopped my hand. Would have stopped my mind before my hand.

My memoir of mental illness just published, a breakdown weathered in the wake of it, I felt skinless, my nerves raw and leaking. I wanted to edge back into writing in public without becoming quite, or easily, reachable.

Now, consumed by caregiving these past 15 months, with so much of what I called my private life abandoned—reading, writing, friendships, time at home with Segbingway—I feel all-public. But public in a flayed, off-kilter way. Turned inside-out by care for others, with nothing behind that outward striving but the burning hollow core that powers it.

Now, ironically, one of the few means available to me to reclaim a private life is to provide the long-missing coordinates to this beach I post from. It will be perfectly understandable to me if there is no one there to float a bottle back.

But for now, in this journal within a blog, I mean to write about the life of caregiving—and, who knows, of other matters that may surprise within it.

For now, the beach is open.

Mike Barnes

The Reasonable Ogre

Tales for the Sick and Well

The Reasonable Ogre

Biblioasis (Publisher)

Segbingway

author, launch at Type Books, Toronto, April 26 2012

illustrator, publisher

illustrator

author, illustrator, publisher

Refinding

(thoughts followed by the photo and poem that sparked them)

Many years ago—maybe as many as thirty; I think I was in my mid-20s—I made a miraculous find on a beach. A beaver skull, small (perhaps a young one who didn’t make it through the first winter, suggested a friend) and perfectly preserved, the skull ivory-white and the long curving teeth deep orange. I wrote a poem about it, “Beaver Skull,” which appeared on the last page of my first collection, Calm Jazz Sea (Brick Books, 1996).

Then, after sitting on my desk for years, it went missing. Things seemed to go missing unaccountably a lot in my twenties and thirties. “The hurricane years” might be a good word for one’s twenties, I’ve thought—and not just my twenties, but a lot of people’s. These big winds blowing things and people in and out of your life. Hurling you in one direction, then another.

Theft? I sometimes thought so. (Giving the hurricane a human face and motive.) A girlfriend I lived with for several years was my prime suspect. She had stolen my cassettes and gold pocketwatch as a parting shot. But not, it turned out, my beaver skull.

I found it, along with other precious items I’d thought long gone, in the dim and long-unvisited recesses of a cellar storage closet when I was cleaning out my parents’ house, over several months this year, after my dad died last summer and we moved my mom into a residence for the care she needs.

Under the beaver skull is my dad’s ashtray. He died of lung cancer, but had quit smoking twenty years before, he and my mom together, when they were 65. From first sneaked smokes in their teens, they’d been heavy smokers for nearly 50 years. Just cigarettes for Mom, but cigarettes, cigars (out fishing or with Sunday football on TV), and pipes for Dad. The pipe resting on the heavy ashtray was one of the most reassuring sights of my childhood, just as the sweet heavy smell of pipesmoke, or the more acrid tang of the cigar, were two of the most reassuring smells. Their ghost presence in my nostrils still brings solid, timeless comfort and security. And it’s not changed even slightly by knowing that my chronic shortness of breath, the slight constriction and gaspiness I feel always in my lungs, is most likely not unrelated to the dense white curtain of fog that closed around our dinner table right after, or just before, the last mouthful of dessert (so thick, that smoke, like gaseous milk, that we kids peeked under rather than through it to see each other), or to the closed-window capsule of even more concentrated fog of long car trips. Though present choices must, deep-set memories never adjust themselves in the light of medical know-better.

I had the bad timing to visit Mom and Dad the day after they’d quit cold turkey. They were in Florida for a couple of winter months, and I was visiting a week in their rented condo. They said they were doing it for their first grandchild, just born. They needed a better reason than “for ourselves.” Just twenty-four hours in, they were in hellish shape—not just cravings and bad tempers, but real physical distress on all fronts: sallow skins, bunged up bowels, aching joints, mouth cankers of alarming size and profusion. Every addicted cell in their body was letting them know what it thought of their going clean. Months, maybe a year, later, I asked Dad if he felt he’d regained health that made it worth it. He gave it a retired doctor’s due consideration, then answered that he was hard-pressed to think of a way in which he didn’t feel worse than before quitting. Many years after that, I asked him if he still felt cravings when someone else lit up. “Yes,” he said, “and every other time too.” I finally understood why he was so tolerant of others smoking around him: it couldn’t make worse an urge that had never subsided.

He was more vocal about it than Mom, but nicotine never seemed to let either of them forget that they had banished it. Like a stalker ex, it stayed in their face.

My ex-girlfriend, the one I thought might have stolen the skull, smoked like a chimney too. It didn’t bother me much. For a (mostly) non-smoker, I’ve been pretty blasé about breathing other people’s secondhand. It’s not tolerance exactly. I don’t know what to call it. Low expectations will do for starters. I know it sounds absurd, but I never thought clean air was something I was entitled to. I still don’t—though I’m more apt to walk out of a room in search of it.

I’m not saying the fifty years of smoking gave Dad his final lung cancer. In fact, I’ve heard that the lungs have amazing regenerative powers and, after a few “clean” years, are as good as new, or almost. I don’t know either way.

Under the ashtray in the photo is his oak desk. Designed and built by hand by one of his early mentors (what a gift to a young protegé!), Dad set it up in the den in each of his homes. In all but the last one, it was also Tobacco Central: its drawers and surrounding shelves stocked with cartons of Philip Morris, boxes of Antonio y Cleopatra cigars and soft packages of Captain Black Royal cavendish tobacco, pipes, pipe cleaners. He said all along the desk had to go to me. I worried that it would be too big for this apartment room—too big literally, but also in all the ways a father’s desk is bound to be, can’t help but be, too big. At times it does feel that way, but at other times, it feels surprisingly right-sized. Like something I’ve been sitting at all along.

The little pewter owl perched on the edge of the ashtray has nothing to do with the other objects, really. My sister-in-law Erica gave it to me one Christmas. It just seemed to find a natural perch on the ashtray on the desk, overlooking the beaver skull.

After a lifetime of living with people who lit up on any and all occasions—to celebrate, to consider, to console, to while away time—I often get the urge...very resistable, a kind of non-smoker’s phantom puff...to light up myself. Always my imaginary smoke is a thick, room-fumigating stogie. This is one of those times.

Beaver Skull

White bone. Yellowed a bit
like ivory on an old piano.
Two great eye-sockets,
and the slightly fragmented lower
mandibles I have placed on
either side, flanking the main skull,
storehouse of everything it was.

Below the large eye-holes where
everything flooded in, the optic nerve
passage through which a fibre now
gone tapered the world,
sawn into pictures.
The tiny teeth-rows like an empty
corncob. The nostrils with flap
of bone still seeming wary and
defensive, sniffing suspiciously,
ready for the great tail-slap.
Hole in back where it all filtered
out again, owl-roost and poplar
leaves toppled nerve to limb.

And I can’t forget: the two
superb orange-yellow
teeth, curved in a perfect
parenthesis. I once saw
maple chips three inches round
and an inch thick. The muscles
that must have supplied those tusks!

Ideally simple remnant of the
living beast, it sits to my left
on the window sill. But the goad
of its white serenity is complex:
I will one day be as perfect
as it is without even trying.

Penny For Your Thoughts

The last penny was cast at the Royal Canadian Mint in Winnipeg on Friday, May 4, 2012.

Rest in peace, good and faithful copper pal. It will be a boring blare of steel, nickel and bronze without your homely tarnish.

Originally, the final million pennies were slated to be made available to Canadians as collector items. However, after pressing the lever to cast the final penny, Finance Minister Jim Flaherty was struck by a better idea, perhaps by the sight of the final shiny disc tumbling into an empty (begging?) bowl.

As Flaherty announced later:

“We have decided to mint another 33 million or so of them. The exact number is still to be determined. But it will correspond precisely to the holders of the bottom 1% of the wealth in our great country. I would like to take credit for the idea, but I have to admit it was my son, an Occupy follower, who suggested it. After a brief family squabble, I saw the sense in it. It is only fitting. After all, those 99% of citizens have kept good and mostly silent faith with the penny left to them by the 1% who took the balance of each loonie. Plans are still being worked out, but one idea I like is to mail one of the commemorative coins to each of the identified 99%, along with a password that will enable them to comment on a national public blog, expressing their feelings about the Canadian economy and their place in it.

www.pennyforyourthoughts.ca will be the name of the site. Personal slur or profanity will not be allowed; otherwise, the site will not be censored.

A measure of free expression is the least we can offer on this historic occasion to the very many who are satisfied with so very little.