by Marc Rettig
for the Kenyon Creative Nonfiction Workshop


“We must risk delight. …We must have the stubbornness to accept our gladness in the ruthless furnace of this world.”

Jack Gilbert, A brief for the defense

First I need to tell you about the life that’s being stolen.

It’s a block and a half from my house to Hanna’s, and we both know the neighbors along the way. Especially Hanna, who made that walk twice a day for a decade. It’s a five-minute walk, but Hanna often took half an hour. She carried old cards from a library card catalog. She’d say, “Oh, look at you, you’ve grown so much!” to a magnolia bud, a baby pine cone, a weed in the sidewalk crack, then pull out one of those cards and carefully sketch its portrait on the back.

Hanna gave the same attention to the neighbors, keeping sketches of their lives in her mental card catalog. “How was your daughter’s trip?” “What did the doctor say?” “Is that a new blouse?”

Thirty minutes each way for ten years cultivates a lot of love.

ALS, that thief, has stolen those daily visits from Hanna, and from the neighbors. It’s a progressive disease that slowly unhitches nerves from muscles, degrading and stealing the body’s ability to speak, chew, put on a shirt, scratch an itch, walk down the street, sketch a bud. The thief took her voice. She writes slowly on an electronic slate. For all their love, people don’t know what to say to a dying woman, however wholeheartedly she is dying.

Now I can tell you about the photograph.

Hanna’s trip from her writing desk on the first floor to her nap on the second floor is a geography of loss. She moves from her wheelchair to the stair lift with the support of a walker. Each of those—chair, walker, and lift—were heartbreaking symbols on first meeting. Now she waves like departing royalty as the lift carries her up the stairs.

Arriving in the bathroom I lower her skirt and support her descent to the toilet. When she first needed that help and we knew she would need it for the rest of her life, her heart broke. Wailing tears and snot. Now she smiles at a safe soft landing on the seat. When she’s done I help her stand, and use tissues to dry her. We glance at each other in the mirror with amused shyness.

In the photograph. we’re using a bristly motorized mouthpiece that vibrates to brush all her teeth at once.

The first time we used the brush, Hanna yelled at me, and sobbed tears of frustration. You have to squeeze it just a little so it will fit in her mouth. We hadn’t learned that. The disease is infuriating, utterly, as are its necessary devices, methods, and mysteries. In that moment we were defeated.

Now light is pouring in the window and the air feels cool. We two friends are together. There will be games in the evening. The brush is humming. It all smells like mint.

I’ve just said something like, “I’m so glad for this edible carwash.” Hanna laughed, and that pushed foam out around her teeth, and that was funny too. And our laughter at the joke and the foam, that was funny, and the motor is vibrating and there’s foam in the sink, and we don’t have control, and…. And it’s all so delightful. There’s only joy in those crinkles at the corner of her eye.

In the midst of all we were living, the moment felt huge. I drew a great breath of delight. I let go of the brush and the walker, reached for my phone and took the picture.

In this moment we were collaborators in the practice of stubborn joy. The poet Jack Gilbert taught us that years ago after Hanna’s miscarriage. Hanna took the lead in walking into difficult country, learning to hold both light and dark through our days, learning to meet life as it is rather than as we want it to be. Loss and gladness, mine and yours, and the neighbors, the city’s, the world’s. That’s a lovely and difficult joy. Once in motion, it’s hard to knock off its tracks.

As is usually true for noble ideas, the practice is mundane. It’s a little noisy. It uses up a lot of tissues. But through that practice we may come to the place where we ascend with a smiling wave, like departing royalty, as are we all.