Grieving While Living and the Fallacy of Bench Depth

It’s a funny thing to go through life and watch things slip away. It’s normal, I suppose, as one ages, to experience losses of all kinds. That’s baked into our notion(s) of what it means to be human, and to live in the world. But things get turned a bit upside down when, during what you’re told is the “prime” of life, you find yourself grieving while very much alive. I first read about this notion in the context of delving deeper into the world of autism, specifically the sub-universe of parenting autistic kids. There was always an awkward, aching imbalance between the “normal” hopes and dreams we had for our son, and the things that we knew we were losing, in real time. This was true ever since we started careening down the PDD/NOS (pervasive development disorder/not otherwise specified) highway, which eventually led to our arriving at Mt. Autism. And that’s where we’ve stayed, looking down at the normal world from this other place.

So where does the grieving part come in? It’s all in the separation(s) from, the aside-ness, the apart-ness. Our son is a young adult, soon to be closer to 30 than 20. So he’s come of age during a time when diagnoses like his are more common and more commonly accepted. But none of that changes what happens in the intimate realm of family life, where love and pain, acceptance and rejection, and accumulation and loss are most acutely felt.

Sure, there might be folks with autism on tik tok, but none of that changes the day in/day out reality of what the life of any given family contending with the challenges related to having an autistic loved one in the mix entails. I’ve learned that over and over and over again. I’m like the village idiot who thought some things might change, and has to keep discovering that that haunting French phrase is truest of all: plus ca change, plus ca meme chose. The more things change, the more they remain the same.

And maybe that’s the part of grieving that’s hardest to bear, the idea that everything in your life has changed, but nothing in the lives of those supposedly closest to you has changed in relation. You are spinning wildly in your grief, which coexists daily with your just being alive, and everyone else is just carrying on, as if all is as it should be.

It’s taken me a very long time to come to grips with this, because I’ve looked for every shard of hope, every possibility that someone in our most immediate orbit “gets it” in some way. And more than that, steps up to offer support, or actual assistance. The disappointments surrounding that have grown through time, but like the grass shoots that spring up after an environmental catastrophe, we have tiny glimmers of something good that we remain deeply grateful for. They are not enough, because they don’t change our daily reality, but they are magnificent, towering gifts that are generously offered when we need them most.

Now I am going to do something one is NOT supposed to do. I am going to name names. Because generic, unattributed gratitude feels insulting to those to whom it is directed. We have been blessed to have in our lives four people who have given us breath, life, respite and joy. It has happened a number of times we can count on two hands — or perhaps slightly more — but those times have been spectacularly meaningful to us. So to Pam and Shelly, who over the years moved into our home — literally — so that my husband and I could get away for a few days, and to Ken and Cheryl, who have taken our son in for a week at a time multiple times — again so my husband and I could have a break, and so that Noah could be loved and embraced fully by other adults in our little world — thank you beyond words. You have given us something that is truly beyond measure. And while I wish we had that elusive “bench depth,” that army of family, friends, colleagues and even hired help to prop us up, give us a break, and catch us when we fall, I’ve come to realize that we never have. And we never will. And while that pains me deeply, when I think about the few folks in our world who get it, who give to us from their hearts, who see us, and who hear us, that is enough. Because it has to be. We will never have what I have long wished for: the embrace of a wide circle of loving family and friends who, while not living in our world, figure out all those magical, empathetic ways to go on the journey with us, if only to make sure we come and go safely, and that when we fall, we land as softly as possible, rather than tumbling to earth from Mt. Autism, battered and broken.