Outside were other dreams, waiting for me.
–Jorge Luis Borges, from “August 25, 1983”
Today I spent the morning grading papers with Ronan, who was occupied with his own reading material: Baby Animals, Guess How Much I Love You, and other baby favorites. He played with his new toys from Josh and Karrie: a textured blue ball and a stuffed toy that is the image of my old Saint Bernard – black and white and fuzzy – in miniature. Ronan C. Louis/’Lil Rones/Rones Bone$ is good company. I got a few smiles. I put him in my lap and with me guiding his chubby hand he helped me send a few emails. Prunes were eaten and naps were enjoyed.
On Sunday morning Weber and I went to a yoga class in South Boston in a renovated warehouse sandwiched between a diner, an ancient stone church and (of course) a few Irish pubs. The city skyline was visible above the tangle of interstates near the Broadway T stop. We stepped from the moldy-smelling hallway into a beautifully appointed, minimalist, Zen-like atmosphere; inside the studio two huge skylights flooded the bamboo floor with bright yet calm light. The instructor, who looked (to me) like a computer programmer, with a wiry frame and wearing serious-looking glasses and, I could have sworn, a pair of chinos, asked us to set an intention for the class. I am always very serious about my intentions in yoga, although I understand this is not the point, which might be why I fail to remember them after the first few sun salutations. On Sunday I asked for strength and resilience of the kind I had witnessed among the parents of affected children at the Tay-Sachs family conference. I wished for their fortitude and gratitude. For their humor and grace. And for the first time ever, having practiced yoga for almost ten years, I remembered my intention, and I did feel strong, and focused, and determined, but not to any particular end – that was the new part, at least for my goal-oriented orientation. I stopped thinking about what that strength would look like and decided to simply use it, test its depth. The class was harder than I thought it would be, and I felt myself meeting the challenge of it, as tired and sad as I was, and even though five minutes into the class I realized that the final glass of wine from the night before had been a mistake. Struggling through the twists and balances and bends, we finally made it into final resting pose and I thought: good, I asked for strength and I got it. Success! Now there will be some payoff. The grief will lift.
The grief did not lift and there was no payoff. If anything, it got heavier, held tighter, deepened its squat. At some point in the class, the teacher laid his body across a woman doing a forward bend; he chilled out there for a few moments and her back became his resting place, his yoga-teacher throne. I didn’t see this, but when Weber told me about it after class in the locker room, I thought it was a perfect image for grief, which makes itself good and comfortable and can sit for a long, long time. Lying on my back I imagined grief as, quite literally, a pile of shit. I tried to move it aside, think it away, scoop it into some mental trash can, tried to imagine the “not-thinking” instruction of meditation not-thinking it away. No luck. It would not go or be shooed away. It continued to stink mightily. And so I decided to get in touch with it, sniff around at it, play with it a little bit, investigate it and be curious. I thought of Play-Doh. I tried naming it: “Tenacious G” or “Griefy McGrief.” It continued to grip.
What I realized, lying there on a smelly yoga mat in a studio in South Boston on a Sunday morning after one of the most emotionally torturous weekends of my life, was that for the first time in my memory I had not had one single thought about how much I hated my body while engaging in physical exercise. In fact I hadn’t thought about the body at all, or what I might do to numb it or improve it or perfect it. I had no energy to put up the usual fights, no patience for those old battles. Whenever these anti-body thoughts used to arise during spin or yoga or during runs or marathon weight lifting sessions, or during all of the stuff that I do out of vanity as well as obsession (and yes, it’s good for me too), I would think I need a drink or I need to do another hour of cardio or I need to cut out sugar, bread, and liquid calories or I’m sure that cute dress in the window of Anthropologie will make this feeling disappear or (before I was married) I wonder what it would be like to kiss that guy, have that new feeling. The magical thinking of the mildly addicted. I wrote a book about the uselessness of striving for perfection, I had what I thought was the perfect child and yes, when he was sick I thought he’ll never be perfect and the force and violence of that statement, of that wish, and of all the addictions and destructive behaviors it engendered, landed on me like a yoga instructor stretching out across somebody’s back.
I don’t believe Ronan exists to teach me anything; that feels like falsely projecting purpose on this ridiculous disease, or treating Ronan like a project designed to further my own understanding of life, but he is teaching me things regardless. He is teaching me what it feels like to live in this body, my body, any body, without despising its form or limitations, without longing for different possibilities, without the obsessing about it that can so quickly lead to the hating of it. With this grief, this overpowering need to be strong in the face of it, in the getting to know it, in the walking of this ridiculous, arduous, occasionally ecstatic path with Ronan and Rick and all the people who love him and us, I have forgotten how much I hate and have hated my body. What I’ve done to numb whatever pain chases this hatred: sex, alcohol, exercise, abstemiousness, wild shopping sprees – all are useless in the twisted face of what I’m facing. And that’s not necessarily a bad thing, to learn that coping mechanisms aren’t able to cope when it truly counts. That they need to called out for the sham that they are. There’s no getting away from this grief, this shit pile that won’t give it up. It’s sticking around. And I’ll have to learn how to deal with it in different, and more effective, ways.
What does a body know? What does Ronan’s body know? As his faculties fade, as his functional body closes in on itself and collapses, what will he know, feel, experience? “He likes to be close to us,” we tell the physical therapy team that comes to our house. They watch Ronan bat at toys, touch his “texture book” from the Berenbergs, squeeze balled up paper, react to his soft puppet toys. “His sense of touch is strong,” they agree. Before he was born, at a yoga class in Hollywood, the teacher asked the class to bless Ronan (who was spinning and turning and already sick) as well as all the other unborn babies in the room, a wish for light and peace and grace. Did he absorb that somehow, or embrace it in some way? Is that benediction locked somewhere in his body? I’d like to think so.
What is Ronan’s connection with the world, with us, when the brain is no longer in the picture? Ronan’s favorite spot, held in my right arm, looking out over my shoulder, his feet dangling around my waist, body pressed against my chest. We call it “the perch.” The one position guaranteed to calm him down.
When I was in high school, at the height of my anorexia, I used to stumble home from school in a hungry blur, eat exactly three tortilla chips, turn on the television and take a nap on the carpeted floor. At night I would take a long bath during which I would size up every inch of me, finding what was wrong, pinpointing places that could be improved. Combing through a pile of soft bubbles, I searched for what was wrong, what was the matter. I feel sadness for that waste of my time and energy, but I don’t necessarily feel pity for myself at that age. It’s what I did then; it’s what I felt I needed to do; perhaps it was all I could do; it’s what calmed me down at a time when I felt isolated and alone and trapped, somehow, in my own mind, inside my own endless thoughts. I was stuck inside a feeling, inside a world I had made intentionally small and (I thought) controllable, and it took me until three months ago to fully step out of it, into a different way of being, into a new world where chaos — where truth — is paramount.
I size up every inch of my son now, out of great love, and occasionally in a blaze of pre-grief, and this practice is helping me to size myself up in a new way. It is not a pleasant experience, but it’s the experience I’m having, and in it I can feel some cure for what has ailed me. Inside this crucible experience of loving Ronan until he dies is a kernel of wisdom I was afraid to reach out for all those years ago and in the years since. I feel myself slowly and clumsily crossing some threshold like tripping across a wire – the motion is painful, inevitable, necessary. And outside this experience, wherever and whenever this road ends, I hope there is a new dream of being, and a person or people waiting for me, saying here you are.