A Butterfly Effect | Part II - These Small Things Will Define Us.


Shot with the X100T


A Butterfly Effect | Part I - Border Crossing.

Stanstead border station:
- “Are those your kids?”
- “Yes.”
- “What’s the purpose of your trip?”
- “Well, a funeral actually…”

We drive the long drive, the one we know by heart—up the White Mountains and down again, winding through state after state. My eyes are tired and Cynthia takes the wheel for an hour. It’ll be late when we arrive…
These days everything always feels much too late.


Shot with the X100T


Holding On

I was the new guy. I’d been invited for New Year’s Eve in Maricourt and not only would this be our first official holidays together, I’d be meeting the entire family: aunts, uncles, cousins and… The Americans. Cynthia had told me about her fabled Tante Pierrette—her mom’s older sister—how she had fallen in love with some handsome American guy and left everything behind to get married—without even speaking a word of English at the time. How she had held everything together after Arthur had been taken at a much too young age, raising her three boys, taking over the travel agency and seeing it prosper. How she could control everything and everyone effortlessly, just by being who she was. A taskmaster all obeyed without question.

I pictured a hurricane; I pictured a red-haired Valkyrie riding north to judge and slay me and throw me back into the pit… I was terrified.

But we hit it off. 

Sometimes you meet people you’ve known your entire life; there’s no awkwardness, no trial period to go through. You just pick up where you left off, as impossible as it may be. Like souls intersecting. Everything I had heard was true, of course: she was a whirlwind. But she was also funny and fearless and generous and completely mad in the best way imaginable. The let’s-drive-two-hours-for-ice-cream kind of mad. I never once felt out of place in her home, never once felt uncomfortable in her presence. Never felt anything but love, friendship and support for myself, for Cynthia and our kids. She was even one of the few to encourage me into pursuing photography as a career and would send me clippings of magazine articles she thought might interest me. Every single time, we’d simply pick up where we left off, as though mere days had gone by.

Yesterday she passed away.

She fought those odds and beat the crap out of them like the force of nature that she was, bouncing back time and time and time again, making liars out of every doctor she met. A Valkyrie to the very end. But life, inevitably, is a deconstruction.

The picture above—with Cynthia and the kids— is a favourite of mine. It was shot almost three years ago and is one of my very first KAGE essays, something entitled We Hold On. She was already sick at the time and we all feared the end would come way too soon. It did… But boy did she hold on.

I’m not a religious man as most of you know but today I’ll sign off the way she always would:
Love and Prayers
Xxx

Nothing to do & the world in a tailspin.


Shot with the X100T. Custom Monochrome Y film simulation.


Look to the Sky

Note: I want to thank every single one of you for the words of encouragement, either in the comments below, via Twitter, Facebook or email. It's been an immense comfort to know we aren't alone in this. Today was a better day after an insane weekend. But it could all explode again within the next few hours. The reality of this sickness is hard to bear and almost impossible to comprehend. I can only hope none of us will walk that path. Again, a HUGE thank you.

Frank Lorenz shared the following poem with me on FB. I thought I'd pass it along:

On the day when / the weight deadens / on your shoulders / and you stumble, / may the clay dance / to balance you. / And when your eyes / freeze behind / the grey window / and the ghost of loss / gets in to you, / may a flock of colours, / indigo, red, green, / and azure blue / come to awaken in you / a meadow of delight.
When the canvas frays / in the currach of thought / and a stain of ocean / blackens beneath you, / may there come across the waters / a path of yellow moonlight / to bring you safely home.
May the nourishment of the earth be yours, / may the clarity of light be yours, / may the fluency of the ocean be yours, / may the protection of the ancestors be yours. / And so may a slow / wind work these words / of love around you, / an invisible cloak / to mind your life.
— John O'Donohue - Beannacht

I’m tired. Profoundly, profoundly tired. For months—years really—my sister and I have been dealing with our mother’s slow, unrelenting descent into the darkness of Alzheimer’s. It sounds heroic but it isn’t. Believe me. It’s a personal hell that brings out the worst of who we are, no matter how hard we try to help and do what’s right. Our own private apocalypse.

The woman who raised us no longer exists. It’s a terrible thing to say but there it is. I have friends in similar situations but in every single case it’s about loss of memory, insecurity, confusion—a terrible and cruel fate, always. But our mother is also full of hate, something we never even knew existed. And she’s chosen to focus her entire bile and paranoia towards the only two people trying to help her through this: her two kids.We are thieves, we are plotting, we are ingrates to be striked off her will; we are conspiring to break her, stealing kitchen utensils in the night, her phone book.... Anything. We're fools, we're morons, we're insane. She can call 10 times a day, filling our voice mail if we're not home—with insults and accusations or suddenly, a cry for help. But when we call back to offer it... The same loop begins all over again. These days she's threatening to call the police. Eventually she calms down but it never lasts. There is no end, no resolution, no discussion possible. And that's what so hard to accept about this disease: the realization that no amount of logic or comforting has any impact whatsoever on the person you wish to help. She is incapable of comprehending anything outside of her own fabricated reality. She doesn't even hear it. It's all a monologue. A dark psychopathic monologue bouncing off the walls of her own echo chamber.

And of course, no one understands how she can still be living at home, all by herself. Because it makes no sense. None. We know this, everyone does, and we've been trying for over a year to make her accept the truth—doctors, nurses, caregivers... She's held her ground, stubborn as ever, fighting everyone tooth and nail. But this week we've reached a tipping point and it'll be out of her hands soon... It'll come down to the very conclusion we worked so hard to avoid. Because we have to, because we've done all we could do to try and preserve this way of life she clings to so violently, even in the face of anger and fear and profound sadness. Anything to prevent change.

Now change will come.
It is inescapable.

I know this is all highly personal and I probably shouldn't be writing about it publicly. But it helps. And right now, I honestly need anything that helps.

So I'll look to the sky this weekend—not for answers, because answers won't come. I'll look up for light and air, for beauty however insignificant.

I'll look up to catch my breath.