This photo of my son Gabriel was taken last September, in more liberated times! The last few days he’s been sick with a sinus infection as he, and we all, try to adjust to the new circumstances in which we find ourselves. His beloved day program has been closed for the time being, and so, like many people, he finds his routine upended and his circles much smaller. We are on “vacation,” but clearly something is different, and he possesses immense awareness, even if he doesn’t speak, of body language and telltale facial expressions and sheer energy. He knows, on some level, that we’re in new territory, that his parents, his brother, his caregivers, his friends and neighbours are all trying to get a grip. But none of this is something to “grip.” It’s nebulous and unknowable—precisely the qualities that the human mind tends to dislike; hence all that banging and resistance going on in there.
He has taken apart my office (his favourite place to sit) and so I’ve reorganized to better accommodate him. He likes spaciousness (how ironic) and for objects to be beyond his reach (if they’re too close, they ignite his desire to throw them; if they’re far enough away, they get to live in peace). Lately he’s been loving his usual jazz playlists, but especially Big Band and also opera (Maria Callas is a new discovery and he wants to hear her daily). Glenn Miller has been on repeat, and he likes to hold my hands and swing them while we listen to In the Mood, Chattanooga Choo Choo and the like (these are really uplifting tunes and I highly recommend). He has his shakers, bells and drum sticks, but mostly he just likes to listen. We drive to the ocean, too, and listen to music there, and sometimes podcasts, though this is clearly my choice and not his (but I figure I get to have some of my own listening in this whole affair).
The world over, people with intellectual disabilities are finding themselves confined to smaller spaces and different routines, because of something hard to define, explain or bring an end to. It is seismic, really, this adapting that we all have to do. There has to be a kind of elasticity and fluidity and you wonder where to find those things. The question hangs there palpably, “How long will this go on?” A snow day you know will end, and vacation, too. This thing, not so much. In our house, we have the added element of Gabriel’s needs, his sometimes tumultuous behaviours, but also his deeply felt presence, his utter sweetness. He is both delicious and sometimes impossible. And we have to do the impossible, for his sake and ours, of learning to float and be elastic in this new era. I was listening to Russell Brand’s recent podcast with Gabor Maté (if you want to hear cogent, sage responses to the pandemic, this is the podcast to listen to), which was brilliant and made me laugh with surprise, which is no small thing right now. Two of Gabor’s offerings that delighted were the Buddhist idea of “Relax, everything is out of control,” and the Chinese saying that a crisis is danger plus opportunity. I have a friend who calls difficult times “another fucking growth opportunity,” though this is clearly what is at work here: another growth opportunity, if an entirely unwanted and overwhelming one. So how do we sit with difficulty, how do we do the impossible?
It’s okay to have no idea. The mind can’t think its way through this. I think fully acknowledging the roar in the brain—that this seems like a shit-storm—is important (and it especially feels this way for caregivers who suddenly find themselves maxing out). It’s okay to feel perfectly, exquisitely overwhelmed—in fact, it has to be felt for it to dissolve. When I stop wrestling so much with my thoughts and resisting my resistance, I notice that that space opens up—the one beyond the mind and all our calculations and unhappiness and struggle. When I wrote my memoir, Know the Night, one of the transformative ideas that arrived toward the end was STOP STRUGGLING. It was the singular and simple lesson of that time period. My resistance had caused so much grief and wasted energy. But learning to float is hard to do, to let go, to say and actually mean, “Relax, everything is out of control.” We can’t fake it (and, as Deepak Chopra has pointed out, forced positive thinking causes more stress). Nor can we reason our way out. The one thing I’ve felt that I can do reliably is locate myself in my body, and have an awareness of my breath—but especially important is the part about being in the body, feeling that energy field. The tumult is still there, and so both of these modes are present: the expansive energy in the body and the difficult, seemingly impossible situation in which the body finds itself. The trick is to allow for both, and then it’s possible to float, at least for a moment.