The body keeps the sunshine
reflections on caring for people we love in ways that they may never remember
We walked into a lakeside garage full of unusual looking bikes and boats on a windy afternoon desperate for some kind of healing joy.
My dad had wandered that morning, leaving both me and my mom in tears. I found him walking down the busy thoroughfare of our neighborhood, safe and sound, but perceptibly agitated by the conflict with my mom over his leaving. Dementia, or at least my dad’s version, leaves one with auras of emotion, especially the difficult kind, but no words to describe and exorcise them. I can usually perceive the emotional fog my dad is in, but like the weather, it’s largely out of his or my control.
In any case, our neighbors had invited us to come along on their weekly ride. BORP (The Mission of Bay Area Outreach and Recreation Program) provides adaptive bicycles for people with a wide variety of disabilities so they can get out and get moving, enjoy the sunshine on their face, sweat, and feel a sense of agency. It was founded in 1976 by people with disabilities and remains open to anyone regardless of economic status or physical ability. In other words, it is one of those remaining spots on earth that models the outrageous beauty of collectivity, interdependence, ingenuity, and care, and makes you feel like maybe not every little thing is going to shit.
My dad and I got outfitted for a tandem side-by-side where we could both pedal and I could steer, plus benefit from a little electric assist when needed, and set off on the open road—over highway 101 and on to the marshland, sailboats, and sea breezes of the marina beyond. My dad seemed down for it, but a little bewildered. A decade ago, he often cycled around Santa Fe where he and my mom lived for many years; I would make fun of his bright, tight cycling outfits, oblivious, at the time, to how the days of his safe and free adventuring were quickly coming to an end. Being back on a bike seemed sort of fun, but also a little much for the contemporary version of my dad, who has grown ever more sensitive to sound and sudden movements.
I was in heaven. After a morning that felt sickening and scary, my dad was safely in my care and we were on the open road, sunshine on our faces, plenty to look and talk about, our bodies working together towards a common goal. We noted the intriguing houseboats and elegant birds we couldn’t remember the names of. We avoided running into various things with our very wide girth. We cranked up the electric dial when we needed a little more muscle.
An hour later, we unfolded our appendages from the machine and thanked the nice people there for trusting us with their amazing bike, promising to come back soon. When we got home and entered the spot where my mom was staying, she smiled at my dad, clearly renewed by a couple of hours spent with her dear circle of women friends on zoom (a weekly ritual!). Everyone had enjoyed varietals of space and sunshine.
“Welcome back. So you went biking?” my mom asked my dad with a big smile.
“Did I?” he replied.
My heart sank. We had only gotten off the bike half an hour ago and already the experience was lost to him? I showed my mom some pictures and my dad seemed to reconnect with the memory a bit. Maybe it had just been the phrasing of the question or the word “biking” that hadn’t allowed his brain to engage?
We moved on, catching up on various odds and ends of multi-generational family life, but in the days to come I couldn’t stop thinking about this moment. In raising children, I have sometimes known I was going to great lengths to give my kids an experience that they may not remember. I’ve taken them to museums they raced through, barely looking at the art on the walls, woken up before the sun to go to a balloon festival, flown them to cities for adventures that may or may not even stick with them five or ten years from now. As I try to understand this new life with my dad, I ask myself new questions about life with my kids: why did I do all that?
Usually, I did it because, honestly, I wanted to do those things. But also because I have some sort of inchoate theory of “becoming a person”: give them all kinds of diverse experiences and they will build up in their minds, hearts, and bodies. The experiences, remembered or not, are the basis for them getting to become who they are really longing to be, shedding the things that aren’t actually theirs, delving deeper into the things they authentically love. I suppose I also believe that being led into this variety of experiences strengthens their own muscle memory, even if not actual memory, of how to try new things, be in new places, in a word, stretch.
Is this the same for my dad now? I was really depleted last week, so getting us to that spot and getting on that bike was no small feat. It was hard not to ask myself the old, “If a tree falls in a forest and no one is around to hear it, does it make a sound?” question. If my dad doesn’t remember the bike ride, does it matter?
I mentioned this to my friend Aarthi and she immediately said, “His mitochondria remembers.”
That seems right. My dad’s body—though also impaired by dementia—has soaked up some of the experience. Maybe his muscles were a little soar. Maybe his lungs were a little expanded. Maybe his mind, even, lit up in some way, even if temporarily, that will help him approach another experience with less trepidation.
And there’s also this: just as I want my kids’ lives to be full and varied, I want that for my dad now. Although he’s grown more sensitive and needs more calm, it doesn’t mean his life should be circumscribed to only that which is familiar and safe. It’s so easy to move in that direction with our elders, especially when we are wrung out from caregiving and just need ease.
But I also want delight for my dad. Sometimes that means just slowing down long enough to open us both up to it—noticing the smell of the sweet peas on a walk in the neighborhood instead of rushing him, or putting our bare feet in the grass and reading Pema Chodron out loud much more slowly than I would if it were just me processing her grounding words. Sometimes I want that to mean moving fast—biking along the beach in the sunshine, sliding into his 1955 Chevy Convertible and zipping along a road that curves high, high in the East Bay hills, dancing, dancing, dancing.
Is that all about me? I don’t know. Just as I aim to try to get out of my own way when parenting my kids, I hope to do so while caring for my dad. With my kids, I try to notice when ego and projection show up and invite them to go have a drink together somewhere else while I parent these two beautiful humans who are very much creatures of their own making. Can I do the same with my dad, or at least attempt to? And what role do my own needs play—as a mother, a daughter, a caregiver—who needs the balloons and the bikes and the sunshine on my own face even if none of my loved ones remember any of it?
I don’t know much for sure, but I do know this: memory is not the only source of meaning. In fact, being close to someone who remembers so little has made me reflect more soberly about how little the rest of us actually remember. I have some core memories, for sure, but much of my past life has been washed away in the incessant, rhythmic waves of just being human. There are moments that I know, at the time I experienced them, I was sure would never leave me, and they are long gone. So many of the things we put great energy into creating die long before our bodies actually do. Or live on in ways that are irretrievable by our brains, absorbed, instead, into our cells and spirits, bodies and cultures.
So did we bike? Yes, technically. But maybe what’s most important is that we are staying alive to life. And that some spray of the ocean, some ray of sunlight, some measure of our laughter is pulsing through both my dad and my bloodstreams now, love and delight transmogrified into our shared, very forgettable story.
So beautiful. You're reminding me to be more present with my own dad and open-hearted when I feel short on patience, and to recall some of the liminal, blissful, hilarious, poignant moments I had with my mom in her final years. Maybe it's the memories we keep as daughters and writers that are the gift of our parents' (kids') spirits to us. What if at their age they don't need to remember any more than the present Now, but we get to keep those memories for our own sustenance and meaning-making?
Every time I see his photo, it reminds me of my happy moments with him. I think of how we had such a lively and thoughtful conversation at Columbia, as he greeted me following my convocation speech in 2002. He couldn't have been more proud of his daughter, and the Elie Wiesel national essay contest that she won. You must have countless memories of this kind even as he loses his.
I'm hugely impressed by these responses that readers have posted, often in tears as I am, constantly and consistently caring and supportive.
You are giving us an immense storehouse of rich ideas and deep feelings! I only wish that I might have expressed mine as well during the long periods when my mother and younger brother were stricken by this dreadful disease. The irony is that the one person in our family who could have matched your eloquence was my brother, a journalist/author, but he was himself a victim. Thank you for being a writer of such extraordinary distinction. DD