Note: As I’ve done in several previous posts, I’ve chosen to write the following in 3rd Person narrative, because the subject is just too bloody painful to write about in any other way.

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<<Rewind

To some, it could have been seen as a questionable choice, relocating the front door of the house and converting the one-and-only downstairs bedroom into an entryway.

Surely the re-sale value for the 3-bed/2-bath house that it was would be significantly higher than the 2-bed/2-bath configuration it would become, a non-trivial consideration for anyone who thinks of a house as an investment as much as, if not more than, a home.

For this couple, however, this house was decidedly not intended as an investment.

As they both approached their mid-50s, and having accrued 20 years of marriage together, this was to be their final home, their Golden Years home. They’d finish out their respective careers; gently nudge their 20-ish year old son out of the nest; retire; engage in a Grandma Moses-esque late-in-life immersion in their arts pursuits: painting, writing, music, photography etc.; and, they would homestead: tending to the gardens, perhaps raising some animals (pygmy goats are ridiculously cute, they agreed), building a labyrinth for walking meditation, blazing a meandering trail through the wooded portion of their property, etc.

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Fast Forward>>

She was running late and appeared a bit frantic, because her Zumba class at the gym was central to her wellbeing, a thrice-weekly opportunity to work her body hard, to move-move-move, cha-cha-cha, coax the heartrate up, sweat profusely, bliss out on endorphins, and shake off the weight of grief for a while.

In fact, she’d sped through the house, out the door, into the car, and was halfway to her destination before she realized that this had been the first time she’d passed through the entryway-that-had-been-a-bedroom-and-then-became-a-kind-of-bedroom-again without being stopped in her tracks by the absence of the hospital bed that had been missing since he’d passed away six months ago.

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<<Rewind

They really couldn’t fathom what the previous owners — who were also the builders — of their house were thinking.

They’d sited the building perfectly, nestled in a clearing that allowed maximum south-to-southwest exposure, flanked by a lovely yard with garden beds and a smattering of ornamental trees, and all of that surrounded by lush Pacific Northwest woods. But then, inexplicably, they installed what appeared to be the bare minimum of small, single-hung windows, providing, from indoors, no more than painfully tantalizing glimpses of the ubiquitous, abundant natural beauty outside.

🤦🏼‍♂️

And so, the mission of the remodel was to bring the outdoors in, by removing nearly all of the ground floor windows and replacing them with as much glass as possible, even in the aforementioned, newly-formed entryway, one wall of which would be almost entirely taken up by a set of walnut-framed French doors, and the adjacent wall by a massive 6’x6′ picture window, resulting in an unusual-but-lovely entryway with a view.

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Fast Forward>>

The decision as to where and when to set up a bed for him on the ground floor of their home, once his ALS-ravaged legs could no longer safely manage the stairs, was excruciatingly difficult. Along with the entryway-that-used-to-be-a-bedroom-but-no-longer-was-a-bedroom-and therefore-lacked-an-interior-door-that-could-be-closed-for-privacy issue, he needed to be near the bathroom; eventually even the three steps down into the garage/shop/art-studio would be deal breakers; and he wanted to preserve the Great Room (open floorplan space with kitchen, living room, and dining room) as a place where he could sit during the day and at least feel some small measure of normalcy.

As for when to make the change, he was faced with a gut-wrenching question:

How does one prioritize their health and safety, when to do so results in never again sharing a bed with your beloved wife?

Sharing the bed had already become quite difficult with the arrival, some months prior, of his ventilator, the mask of which, thanks to his slowly failing respiratory muscles, he needed to wear all night in order to breathe easy enough to sleep. And while modern technology has resulted in ventilators that are remarkably quiet, the sound that is audible is incessant and resembles Darth Vader’s machine-assisted breathing just enough to creep nearly anyone out.

Amidst the deliberations over all of these concerns, one night at bedtime, the last few stairs were so difficult to climb that he almost fell, amounting to the scare he apparently needed in order to know for sure that it was time.

That night, he reported his decision to her, together they had a big cry, and in the morning, because going downstairs was slightly easier and therefore still manageable, he made his way down almost like a normal day. And actually, it would be several weeks before it would fully sink in that, having descended those stairs for the last time, he’d never again see his bedroom, never have another bath in the clawfoot tub, never poke his head into his son’s room to see if he was awake yet.

Instead, though he had few regrets, he indeed regretted not having taken a moment to have one last, long, loving look around upstairs.

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<<Rewind

If he were to list the things about his wife that he most appreciated, very near or at the top — right up there with her magnificent brain, her generous heart, her love of the great outdoors, and her uncanny ability to sing harmonies with just about anyone — would be that she had a gift for making everything around her beautiful: from the ever-changing/evolving decor in their home, to her gorgeous flower gardens and landscaping outdoors, to the paintings — mostly portraits oozing with feeling — that she created in her studio.

The makeover she’d done on the existing gardens at their final home — doubling the number of beds and adding a rainbow array of perennial flowers, statuary, and other landscaping elements, etc. — so completely captivated him that his burgeoning interest in photography was heavily influenced by her green thumb and aesthetic choices. Scanning through the photos he posted to Instagram, the vast majority of images captured during the last two years in which he could still operate a camera were of flowers and other plants taken right there in their yard.

It was a not-insignificant amount of solace, then, that his downstairs bed would sit behind a Japanese shoji screen, and beside the aforementioned large picture window, in the aforementioned entryway, affording him a stunning view of her garden.

The Actual View

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Fast Forward>>

He wakes up, and even if he was in a hurry, actually hurrying is impossible. He’s wearing his ventilator mask, which is tethered by an air tube to a machine on a rolling cart beside him, and his adjustable hospital bed is raised considerably at the head and knees.

To exit the bed requires:

• searching and reaching for the controller;
• fumbling with ALS-weakened fingers to press the buttons until the knees are lowered down flat and the head of the bed raised to create an upright seated position;
• fumbling with ALS-weakened hands and arms to shove the bedding off of his torso and legs;
• fumbling with nearly his entire ALS-weakened body in order to swing his legs off the bed and lower his feet to the floor;
• removing the ventilator mask;
• turning off the ventilator machine;
• standing up, pivoting, and sitting down in his wheelchair.

So, he wakes up in no hurry to go through all of that effort simply to get out of bed.

Instead, most mornings, he lies there a while, sometimes drifting in and out of sleep multiple times, always, when his eyes are finally open for the day, he gazes out through the window, and the first thing he notices is a triangular trellis his wife and son had constructed using fallen branches from the trees in the surrounding woods, and upon which he focuses initially, then widens and softens his gaze, engaging in a kind of informal meditation practice.

In spring, spread out over an archipelago of a half-dozen flower beds, bordered by lawn and gravel walking paths, the parade of color begins with crocus, hyacinth, daffodils, and tulips; iris and poppies, peonies and clematis take the next shift; roses and daylilies and dahlias rule the summer; echinacea, Chinese Lanterns, and sunflowers welcome in autumn, and that’s not even 50% of what grows out there, only the less-than-50% that he can think of off the top of his head if asked!

By late autumn, once the deciduous trees have lost their leaves and the colors from the flowers are all gone, The View remains beautiful. The layout of the beds, a charming sculptural ornament here and there, a small number of evergreen plants in the foreground, and of course the evergreen cedar and fir in the woods behind, all of which prevents the onset of winter from being overly bleak. On the contrary, add some freshly fallen snow and it can be breathtaking.

And yet, ultimately, The View is manifestly bittersweet, evoking melancholy in equal measure to beauty-induced peace and joy, for it contains the walking paths he can no longer stroll upon, the woods he can no longer wander through. Beyond that, in his mind’s eye, he can see the nearby lake around which he’d hiked and bicycled many times, and in its waters had swum; farther out, but still vivid as can be, the playgrounds of the Salish Sea and the Cascade Mountains where he’d had so many physically exhilarating adventures; and farther still the many places he’d had the privilege of traveling to and exploring largely on-foot, most of the west and east coasts of the U.S., Canada, Hawaii, Mexico, Costa Rica, Jamaica, Italy, Portugal, Egypt and Israel, places he’ll never be able to return to, and the many places he’ll never reach.

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<<Rewind

How many of us ever think about what or where our deathbed might be? Most of us have no idea as to where we will be when we die.

Some who are terminally ill, once bedridden, might contemplate that they reside in what will be their deathbed, but what of the ALS patient who is still well enough to get out of the house from time to time, transported in a wheelchair, of course, someone still of sound, lucid mind, whom, in preparation for the move to the entryway/bedroom, accompanies his wife to the medical equipment store to pick out an adjustable hospital bed, knowing full well that this will be his deathbed that he’s shopping for?

He’d tell you that the only word that comes close to describing the experience is:

Bizarre!

Yes, with an exclamation mark! he insists!

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Fast Forward>>

The hospital bed is gone now.

The entryway is solely an entryway once again.

The view remains, always evolving with her newest decorative garden touches, and though you can’t actually see it through the trees, there’s a fairly recent addition out there in those woods. In a beautiful, loving memorial gesture, his wife organized a series of work parties, at which family and friends created the meandering hiking trail through the wooded portion of the property that he’d dreamed of creating but was never able to.

It’s not a vast area, and so his vision was that the trail should meander in a winding, snake-like path rather than a straight line, allowing for a stroll of sufficient enough time to mentally disengage from busy life concerns, and to connect with the lush natural world that abounds there under the canopy. Plans included several spots where a bench or hammock would provide a stopping point for even more immersion time there. 

But the most significant personalization of the trail amounted to a celebration of something he experienced during a shaman-guided daylong psychedelic mushroom trip he had early in his ALS journey. During this trip, and in the weeks that followed, many owls appeared to him — in poems and novels, in art work on signs, posters, and t-shirts, and in the form of artsy crafty knick-knacks — and a comforting notion began to take root, that these owls were actually spirit guides standing by to support him during his transition into the afterlife. The resulting memoir that he wrote had allowed him to share this story with the world, it inspired his second tattoo, and in honor of the owl’s importance to him, his family and friends placed owls of many shapes and sizes — jewelry, metal, clay, wood, even a large plastic lawn ornament with a solar-powered light inside — perched in or hanging from the branches of trees scattered along the trail.

You don’t have to believe in spirit animals, or even in an afterlife, to enjoy The Owl Trail.

But, try walking it a few times and, well, who knows?