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

reset

Letter to Thursday

Dear Mike,

Though we share a name and parts of a life, we have never met. Neither of us thinks this is strange. You, because you don't know–and can't believe–that I exist. Glimmers of my approach you either miss entirely or dismiss as mirages; news of me you discount as unfounded rumour, lies, or tall tales told to “buck you up.”

Whereas I have no doubt that you are real. I know what you have done in the past and are likely to do again. I watch in fear and resignation as you approach, in part because I know that when you get here I will be gone. You will be living the life we share, alone. And then no communication between us can occur.

That is why time is short, and why–though there is much I would like to say to you–I must keep this as practical and brief as possible.

Two days ago, after sensing your approach for several days, I saw definite signs that you were near. Thursday was a bad day. Repeatedly, I had trouble understanding what I was reading. The words were simple but the letters looked like black ants scattering. I would track a sentence carefully to its end without extracting any meaning, then follow it again with the same result. To test myself, I opened a well-known book, a book I'd read a dozen times. Non-sense. Or, at best, a kind of senseless sense, a forced march of symbols but with the meaning, the joy, scooped out of them. Like a file of ants that can be observed and followed, but with no true understanding of their purpose.

It was your world, of course. An advance warning of it. It is not a world that can ever really be described in words, since it exists mostly without words, beneath them. It is a place of slivers and shards, without cohesion except a unitary drabness and vileness. A no-place where reality itself is scissored into tiny bits and then scattered about. Even the simplest physical actions become difficult, you stumble and cut yourself often, since the body's parts are not coordinated and are poorly aligned with the things around them.

Sequences are smashed. You find yourself stirring something in a pan with no memory of having put the ingredients in the pan or any idea what to do with them next. You pause in corridors, a blank behind and before you.

(If I can describe your life to you, are you more likely to believe I exist? If this message in a bottle washes up on the shore you pace, and opening it you read a description of your days, could that amount to a faint recollection of a previous life? A faint hope of returning to it? If so, that would be everything.)

The news is bad, for me. You are coming soon. The other signs Thursday were unmistakable. Food had little taste; I chewed and swallowed it mechanically. Purpose leached from things; an hour became a sequence of impossible chores I had to gird myself for and then grind through clumsily. The past became a wasteland, a desert of failures and squandered hopes. The future became a constant anxiety, spiking at times into terror. For where could such a hapless loser (as I judged myself to be) end up except homeless on the streets; broken in an institution; or dead by his own hand?

Yet if the news for me is all bad, for you it is all good. For I am coming after you. I am coming back. We succeed each other. You are Thursday but I am Friday. Friday was yesterday.

Yesterday I drove to a man's house. We drank tea together and talked about his daughter, who is ill and whom he worries about. He felt he could talk to me, that my opinions would be valuable, because of a book I wrote and spoke about at his church. It is, in part, a book about you and me. And during the hour I spent with him, I tasted his tea, I felt the leather of his couch, I saw the sunlight slant across his pictures. I knew I was in the world and had a place and value in it.

There was more, yesterday. I drove to Hamilton, where I grew up, and spent the afternoon with an old friend whom I had not seen in a dozen years. We had tea with her elderly parents. When we left, her father, who is shrunken but still fierce, shook my hand for a long time, his grip still strong. We had more tea at a Tim Hortons–I hadn't drunk so much tea in years–and talked and laughed at length. She, too, worries about her children–especially her son–and as we talked, her cell phone rang: her parents, anxious since they had expected her home sooner. She bought two of my books, for herself and for her brother.

For much of the day–for most of it–I knew myself to be a part of the human web of worry and laughter. I knew myself to be a person of gifts. Artistic and intellectual gifts, yes, but before and beyond these, gifts of connectedness, of linking myself closely to others.

I returned home to Heather and the life we have built together here. And I knew, again, that I loved and was loved in return. And that I belonged. Not just here, or there, but anywhere I am.

I am who you will become. As you have many times before, as you will again. (You will not remember this or believe it. But if you read this you may doubt–for half a second–the nullity you perceive in all directions. And that half second of doubt is what I want to purchase. It is what I am banking on.)

Today is Saturday. That means this is not said as well as it could have been on Friday, though still far better than on Thursday when it could not have been said at all. Thursdays will gain over the next few weeks, and worsen still, though at the start there may still be the occasional Friday, or a part of Friday, to leaven them. I will enjoy these respites as I can.

I have little hope that you will read this, and only a faint hope that you will understand any of it. But a faint hope is not no hope. Now, while there is time, I mean to leave this in different places, in different forms, in the hope that you may find it. The same message but in different bottles, loosed in different currents.

I promise that I have not lied to you about any of this. I will not say that the waters that surround you are not black and treacherous. Or, even, that your constant fear that one day they will swallow you for good is not well-founded. Though I pray–for both our sakes, since I cannot live without you–that it may be otherwise.

All that I know for sure is that you have emerged from these waters before, many times. And that I believe and expect you will again. And that I will be waiting for you–here–when you do.

(We will not meet. When you remember writing this, you will be me again.)

Mike