Saturday, March 5, 2016


Recently, I attended the reading of a younger friend--his first book. A good crowd, good questions afterward, both readers engaged and funny. The podium, the desk at which they sat, the moderator in an easy chair, the rest of us in rows of folding chairs. My books signed, chat with the friend complete, I left and talked with the friend I'd gone with about my own writing on the car ride home.

How this friend had been right when he'd said the people who keep writing don't rely on inspiration, they just write. Not that I haven't heard other writers say it, not that I haven't said it myself.

I found myself enthusiastic about my own work. I am. Returning from a Philadelphia writing retreat, I am the most confident about approaching said work than I have been in several years.

At the same time, I experienced the displaced sadness one feels as a wedding guest after one has been married for some time--of being a witness to young people just starting out. I felt ridiculous. Then again, this friend is, I think, 33, almost the same age I'd been when Robert became ill (34). We each have/had lives ahead--I spent my thirties swallowed by fear and anxiety, my forties trying to recalibrate my life, and now, yes, now, the fifties, after a few runs at Making Something Happen have been derailed by illnesses and complications of my lovely boy. I know what the friend sacrificed over several years to make the book happen. Even though this sacrifice was condensed into a few years, sacrifice nonetheless.

That I can identify with. Yet how odd the roles we caregivers are compelled to play: one gets used to bolstering the lives of others and it becomes a habit one cannot quite stop. I'd rather be the person in seclusion, writing, writing endlessly and revising, all to make the work the best it can be. Shutting out all the other "supposed to" moments.

When I told him all of this (by text, naturally, in little bytes) to another friend, he wrote back, I don't think things have to close down at all - my cousin is a year older ... She's in the peak of her creativity. And so are you. Your writing us much richer for your years and experiences and losses. 

That word, "losses," again. Perhaps experiences and years are my emphasis. So many narratives to impose upon life, rewrite, revise. It might be better to realize life has no narrative flow, only characters and voices, actions and reactions. Writing memoir has taught me I can choose a dozen different paths through events, make the story almost what I will.

Which makes life, of necessity, malleable and, therefore, if not beautiful, willful and wild.

Thursday, March 3, 2016

Each day

Each day I am either irritated or entranced by the dozens of movements in synchrony that compose daily life--eye and hand coordination to load the dishwasher, percussive slotting of glassware and earthenware; contretemps the motions from sink to trash, the barrel sliding forward from its drawer with a flick of the hip to close it again. Each lift, each balance, each push and pull, pick up and set down. Ballet of necessity.

This network of motion reminds me of the web of human relationships that underpin my life--hand to hand, grasp and let go, settle into place, wipe clean. And repeat. Dishes, utensils, cups and bowls in ever-shifting arrangements, daily, weekly, monthly, annually. How wonderful to have this.

Sunday, July 26, 2015


Lovely to see Robert so very happy and engaged at Imagination Stage. Yet I feel increasingly worried about his level of happiness. How can I maintain that as his world shrinks? Will it shrink? That possibility real as the physical constriction of my throat as the thought enters my mind. 

Sometimes people mention or reference a concern that Robert suffers. I honestly think no. Is his life challenging? Sure. But does he suffer? No. He may have pain and discomfort from time to time. He revels in life, activity, outings, people. 

Boredom. Now that he experiences. Or suffers from. 

Friday, July 3, 2015


Depletion feels like this: roar of voices brushing past the sides of my face; sets of tiny hands clutching tasks in one fist, grabbing my shirt with the other and pulling, pulling; lists blurry with wavy scribbles crossing off items, so cluttered with pen marks I can barely read those yet undone; pressure building hydraulic, a frustration, as those who ought to have been more flexible refuse to bend.

My fingers become sore from typing emails.

I can't bear to have even one more conversation, even with someone I like. Even my words seem like pieces of me, broken off and handed away.

So I bake and cook. I literally feed myself and others. Grind up and pulverize the day in the food processor, emulsify it with oil to suspend all the particles and keep them in place. Powders and solids in a bowl, add liquids and scrape the resulting lava-like batter into pans. Bake until the rising process stops, as it must because that chemical reaction can go on only so long under heat. Marinate and chop and mix.

Ingredients in columns, steps and processes that result in a product shaped and refined by me. It becomes what I want to smell and taste--consumed, it reconstitutes me.

Monday, May 25, 2015


I've long been of two minds about summer--ever since Robert's collapse in 1998. That was July. I can't think about what should have been because that serves no purpose. I imagine that other people imagine I would think about that, but I don't. Every now and then a thought will drift around the edge of my consciousness, but the processing part of my brain snatches it and tosses it away. Without any intervention from my own active thought.

Summer ought to represent freedom: no jackets! Short sleeves! The sun on our faces as we lounge in the backyard/at the beach/on a mountain top. Relaxation, fewer obligations.

The inverse, though, is true at my house. When school lets out, the extra nursing hours provided so that Robert can attend school go away. We have to access in greater numbers other resources we relay on throughout the year. The question of what he can do and where he can go. Now that he has a trach, how we travel, if we travel, is up in the air--he needs overnight nursing.

When I envision the summer rolling out ahead of me, bright and shiny, I feel exhausted. Frightened. Can we even make it through another summer? Will we? The hours of each day are puzzle pieces, the days themselves fit together in unusual ways. Hold on, I tell myself, we're going into it, as though summer were a tunnel of darkness, at the other end, the cold steel light of autumn.

Thursday, May 21, 2015


I've taken a break from blogging while I was enrolled in a mindfulness course--meditation has been good for my soul.

And my soles--the soles of my feet. Not only are there sitting meditations, but movement meditations. "Walking meditation" has not been one of my favorites, and I have never practiced it at home. The last day of class, though, we worked on it again.

The small conference room where we met was a bit drab, sometimes shadowy. I liked to sit facing the wide window--otherwise I faced a wall or door or white board. The matte carpet was a shade between putty and gray. My feet were bare, my toenails deep rose and just beginning to shed their pedicure--that little line that appears at the base of each nail.

The idea, to walk very slowly. Very very slowly: Balance your weight between the two feet. Now start to shift weight gradually to the left foot, without lifting the right foot off the ground. Lift the right heel, and slowly roll and lift that foot off the ground--step forward. Gradually put weight on the right foot, without lifting the left foot until the right has taken all the weight. Keep going--with intent.

Why move with such focus and deliberation? To notice everything in the moment.

This sounds incredibly boring, but it's incredibly what one can notice by directing the mind entirely to the present, to what is, to the now without wandering, without other distractions.

Obviously, I'm writing this all down because what I noticed shifted from the carpet and my feet and the sensation of movement broken down into each and every aspect of it--to realization.

As I walked in exaggerated slowness, my focus became the moment when one foot lifts entirely from the floor, swings forward, and the body must support itself on one leg, balancing. Ordinarily, most of us barely notice the split second walking where the body balances entirely on one side. Whether both feet are off a surface at once is what differentiates walking from running. The moment when a body decides what it will do, what it can do.

So this momentary suspension, point of balance, the body holding itself in space fascinated me yesterday. The singularity, being alone, waiting for weight-bearing, weight-sharing, respite, cooperation, wondering if it will come.

If you have two legs, two feet, they work together. A marriage or partnership can function that way or it can be off-balance, hopping. Each step with Robert's care bears weight. One side of the body takes it hard. Sometimes the burden has to be off-balance--one spouse, one side carries other burdens. How it's been with us.

Sometimes one side can't bear to let the other side carry that weight (right, think of The Band's eponymous song--it's a good one), and the left knee and hip bones and ligaments grind together, contract and never stretch enough.

How good it's been, I thought, slowly lifting my right foot to the top of my shabby toes, to feel the moment of release when the load of the body becomes the responsibility of the other limb, to feel the transfer of anxiety and concern leave that side and go to the other. How good it's been to know the other foot and leg can balance on its own, temporarily leveraged to give its partner some relief. How lovely to feel the lightness of a foot swinging briefly through air.

Tuesday, April 7, 2015


Staring at the screen, listening to birds chirp, gray sky, flecks of rain. Is it too sentimental to say that Robert's smile really lights up any day? Such a statement. But when I feel uncertain, when I worry about what I may or may not have given him emotionally, worry that he hasn't had enough activity or one-to-one any given day--I think about whatever gives him pleasure and how when he smiles his real smile, not his half-smile, not his mischievous smile, not his I'm-not-going-to-pay attention-to-you smile--everything brightens and my heart lifts.

That's another cliche: my heart lifts. But some of these things have a basis in physiological feelings. Long ago I scoffed at the idea your knees could go weak when someone kissed you. Then someone did who made my knees go weak. Expressions can be an extension of the body. My heart does "lift" when Robert smiles that real smile: my chest raises, something in me goes light.