In hiking there’s a moment where you think you’ve reached the summit, and your heart delights. Bright colors flash across your vision as your pace quickens and the glories of the view you imagined pinken the canvas of the sky. But you were wrong. It’s just some meaningless hillock. The skies are grey, you’re exhausted, and your beyond is lost.
Your heart drops. Exhaustion, or fear, growls, louder. Your aching sinews. The entourage you’re leading, whose sweaty brows and tired eyes look into yours, wondering without words. Do you stay the course, or listen to the winds? Then there’s the spark, flicking a fuel inside you didn’t think you have. Then the knowing. And the next step.
Our 2020 Coronavirus trail was like that, and more – even now, as we ended the year in the way we survived it. One foot at a time, marching our daily miles to a Dunkin’, singing, certainly looking different, pushing away a doubtful fog by striding into a still-unsettled and unsettling new year.
Never did I imagine on March 3 in a hotel room in Cuba, on tour with my mother while CNN reported of a Biogen conference in Boston infecting over a hundred attendees, that the virus would so affect us. We’ve been blessed, compared to so many. Our family stayed intact, mostly healthy with the exception of a niece and nephew with mild cases, mostly employed, mostly managing the confusion and boredom of two very challenged young men. Last year I castigated myself for slowness in the grand plan of a future living situation for Will and Jeff outside Mom and Dad’s home. In 2020 it was a supreme blessing. By residing in the family home, our sons avoided the group home lockdown of 13 weeks, where parents were barred from seeing their loved ones – and these already challenged young adults were left without structure or understanding. A lockdown that inspired self-injurious behavior, or seething that turned against parents.
More importantly, because I also had at-home support funding to keep Will and Jeff safe, I had two Essential Worker who epitomized the name. They saved me. Despite taunts from rude others as they walked loops with little else to do, these two showed up here four or five days a week as my rudder against a COVID storm. As both boys but especially Will acted out from not understanding why this Coronavirus shrunk their world, I had four to six hours a day to work and pretend I’m more than just a special needs mom. I owe them an incredible debt.
We more than survived here. We walked our way to wellness, by finding the boys’ love of a simple medium iced coffee at a Dunkin’s in a gas station 2.7 miles away. So simple, so small an act to be transformative. The Dunkin Trail became our beyond. When day programs and churches and gyms and restaurants closed, and we were asked not to bring our germs northward into the New Hampshire and Maine mountains, we found trails of our own. Serendipity! Simple delights! We may not have had Four Thousand Footers, but we had feet to carry us, friends and loving supporters to help, and the ability to seek a new summit of joy. In our near-daily 5.4 mile round trips to Dunkin, my guys found an event to organize their day, a reason to wake up, healthful exercise, and a daily delight in a cool plastic cup.
Blazing a new path for us went beyond daily walks. I saw how greatly Will benefitted from physical activity, the outdoors, and agency where their disability has long meant they march to some other drummer’s timing. The pandemic pushed me to do what I’d been considering anyway – to partially self-direct their programming to their daily path brought them some small measure of joy.
Self-direction also enabled us to include an every-Monday volunteering job at a food pantry warehouse. COVID restrictions at the day program and its insistence on scheduling in 45-min time blocks with 1:2 staffing would never have allowed the experience, nor the growth Will in particular has gained there. He still has occasional avoidance moments where his perseverative hand-washing or bathrooming unfocuses him. Yet his ability to work for three full hours in a demanding setting speaks volumes about capability, not disability – if only there’s belief, and commitment, in its value.
It also enabled Jeff to participate in Garden Art each Monday through October – to build skills, and hopefully find self-expression beyond what I know. Simple kindness of strangers wrapped us in a blanket of love. A family with a “Take a book-share a book” case on a street we walk to Dunkins became friendly with us, and one day chased us, apologetically maskless, to alert that we needed to come back and get a book someone just donated – a book titled “Twins.” Every day I’m stunned by strangers who wave to us from their cars as we march along – perhaps friends whose faces I can’t see, perhaps frequent passers-by with a high-five for our making sweet lemonade from COVID’s lemons. The odd puzzle piece that we are with autism sometimes feels like a glittering gem, as the universe says we are not odd – we are precious.
Enough pretty talk. COVID sowed plenty of weeds in the garden. Physical activity is great but you can only walk to Dunkins so many minutes a day, before you have to face yourself, your lacks. The guys need way more than daily walks to make a purposeful live. Staff turnover after about four years of consistency was inevitable, and made harder by the pandemic, despite my trying to be a good employer. Finding Monday and Fridays workers to show up oddly continues to be problematic. Disgruntled employees who get the most often whine the loudest at hangnail-size injustices. Food pantry Mondays where I’m usually heaving 50-lb potato sacks leave my left shoulder hurting. Client demands don’t let up even when I wake before the sun to proactively address them. Insomnia dogs me and every few days I fall asleep at 8 pm trying and failing to normalize my rhythms. I try to prune the garden as I can, without taking it too personally which I always do.
Then there’s Jeff, whose easygoing nature means he is readily ignored – both by my own prioritization, and by caregivers focused on making sure Will doesn’t bolt or raid the fridge. I deliberately prioritized Jeff’s painting today, and am working to hire additionally with an eye toward him and his needs.
Last, probably least, though it shouldn’t be, there’s me. I’m failing at daily anything – writing, exercises to staunch the dreaded A-word (arthritis), sleep in a bed not the sofa. I’m behind on the book, getting punched at work more than I’d like, as dust-bunnies gather behind my clutter-piles. Yet. -Yet again. I love that word, and how it interrupts. This year I found my way to this blog, we finished the Belknap 12 and the 52 With a View hiking lists, and deepened family connections made oddly stronger as virtual ones. I’m 5 pounds COVID-heavier and yet my heart is as light, and joyful, as shimmers on the ocean.
Today, on New Year’s Eve, Will and Jeff have traveled nearly 1,000 miles since the pandemic hit – 952.7 to be exact as of this morning. But we’ve gone so much further. We saw a false summit, where the fog of a pandemic obscured the known, and instead found an inner trail called Belief – as in, believing the raw matter inside each of us can guide us, if we but listen and get out of our own way.
The anal retentive goal-setter in me is bummed that holiday weather and busy-ness in December precluded our ability to hit the magic 1000-mile mark during 2020. There’s still today, my inner voice says. Still 18 hours remaining for unsung songs, a dab of color toward a dream canvas we’ve longed to create. The self-pressure is daunting. Working and day program Zooms and essential, overdue Mom exercise and healthcare have to be done. So does a great New Year’s Eve commemoration, if only to show the boys what New Year Eve means. So many more mountains, so little time.
Jeff’s giving me the answer to that, already. While Will and his Dad sleep, Jeff’s chanting “go later,” or some variant, as he circumnavigates the kitchen, then the twinkling lights of the Christmas tree we’ve so loved this year, more than ever. He’s finding his own morning path. And so am I.