The more things change, the less they stay the same.
This past Saturday morning we said goodbye to someone I cherished, Jennifer Howard, at age 75. Jennifer was a longtime family friend, a woman seemingly loved by everyone who knew her, and truly one of my favorite humans in the world. Several years earlier we also lost Jennifer’s lifelong partner Mitchell, a man I admired and looked up to all my life, who was as close to a grandfather as I ever had. Truth be told, Mitchell and Jennifer led an amazing life–more than most people could ever ask for. They lived out loud, they traveled the world together, they opened their home–and their hearts–to a constant stream of friends and family. The love they felt for one another, and the joy they shared with others, seemed boundless.
Next to my desk I have a photograph of the Mad River Valley taken from the front porch of the Vermont home Mitchell and Jennifer inhabited for nearly fifty years. This image is a touchstone for me in moments when I am sad or weary, and I think of them every time I look at it. Over the years, when I’ve been in the Valley while Mitchell and Jennifer were away traveling somewhere, I would occasionally stop by their house just to stand on their porch, take in the view, breath deeply, and feel grounded for a moment. And suddenly today they’re both gone from this world. They’re not off visiting the Galapagos Islands; they’re not wintering in Key West; they’re not hiking the Long Trail; and the house that was always so warm feels cold and empty. It’s a reality I’m struggling to absorb, and I even debated if I should put the picture away. All of this has left me asking some fundamental questions about how I process grief and loss as a person with High-Functioning Autism.
The world can be a bewildering and often overwhelming place for those of us living with Autism Spectrum Disorders. We struggle constantly to understand and interact with the neurotypical world around us. Things happen faster than we can process them, and we’re easily lost in the fog like a pilot who no longer knows which way is up and which way is down. Many with Autism use rituals and repetitive behaviors as a means of grounding, sometimes without even realizing we’re doing so. We are also grounded by familiar people and places, anchor points in an otherwise chaotic world. Humans that we know and love, who we can count on to love, understand, and accept us with all our quirks. Places that we can always go back to, like my hometown of New Orleans–or Mitchell and Jennifer’s front porch in Vermont. The constancy of these people and places, and the connections we share, help us find our bearings and remind us who (and sometimes where) we are.
The problem, of course, is that the world is an impermanent place. This I gleaned from years of studying Shambhala meditation. Our journey as humans is marked by uncertainty, loss, and pain. The harder we cling to people and things, the more elusive they become. This too I know. But while the concept makes sense to me in the abstract, I struggle mightily with its application to my life. Of course, many people prefer certainty and some degree of constancy; that’s not unique to people with Autism. But as a man with Asperger’s, I find change to be far more than uncomfortable. For me, change is inextricably coupled with loss, regardless of whether the change is for the better. This has led me to stick it out with the wrong jobs, friendships, once even a marriage, long after the point when I rationally knew it was time to go. Years after the fact, I still have nightmares about moving out of the house I once lived in, changing jobs, saying goodbye to people. Letting go of people, places, and routines familiar to me is extremely difficult–seemingly impossible at times. And when I do it, whether by choice or not, it leaves me unsettled and feeling a bit lost in the world. Losing first Mitchell, and now Jennifer, has certainly been that for me; my fundamental sense of where I am in the world is somehow altered without them.
The only thing worse than losing someone you love is watching someone you love suffer. And for the past year and a half, Jennifer’s friends and family have watched her suffer tremendously with her health, as all the while she wanted nothing more than to be reunited with her love Mitchell. To wish anything for Jennifer but a joyous, peaceful exit from this world would be unspeakably selfish. And, truth be told, when I read the text saying she had passed quietly during the night surrounded by her loved ones, my first tangible emotion was relief. Relief for her, and relief for all those who loved her and remained by by her side till the very end. But later in the day, after an early morning dash to Vermont, as I sat next to her, touched her hand and kissed her forehead to say goodbye, I realized there is now a hole in how I experience the world. From her bedside I gazed out the window at the same view of the Valley I’ve seen thousands of times before, and suddenly it didn’t look quite the same anymore. Not more, not less… just different, because Mitchell and Jennifer were no longer there to see it with those who loved them and shared so much joy with them over the years.
Of course people don’t live forever. And according to Frank Sinatra, someday even Gibraltar may tumble. But as the humans we love and admire grow older and eventually leave us, the world doesn’t have to become duller and more uncertain. Instead we should each see it as our role to take their place, to be the person who enriches the world for others, and who eventually passes on the torch to another generation. In the meantime, the Mad River Valley is in fact no less beautiful today than it was yesterday. It is perhaps even a little brighter as I think of the decades that Mitchell and Jennifer enjoyed the view from their house. Someday my own children will hopefully stand in the same spot and think the same of me when I’m gone. In the meantime will I cherish every memory I have of Mitchell Kontoff and Jennifer Howard, and wish them Godspeed wherever their journey takes them next.
The picture will remain on the wall next to my desk.
This post is dedicated to the memory of two amazing humans, Mitchell Kontoff and Jennifer Howard, with profound gratitude for the love, laughter, and good times we've shared over the course of nearly five decades knowing each another. "May their memory be for a blessing."