This was November — no, maybe December. Sometime right before Christmas, I’m sure. She was dressed in loose clothes, a housecoat and a blanket for her legs and feet. Two big down-filled slippers poked out from beneath the blanket. On her face, were bug-eye-frame glasses propped up not so much by her nose as the oxygen mask. Her face looked almost too small for those glasses.
But it was the eyes behind those glasses that drew my attention. They were bright and small and tired-looking. They told you she was still alive, still fighting, still thinking up bad jokes. But they also told me they had seen enough of all this, of the housecoat and those slippers and that infernal breathing machine that was a closer friend to her now than her husband and children. The world around her rocking chair was small. Full of love, mind you, but very small, and shrinking with each breath.
If you were to name the cruelest diseases known and list them with the worst in first, ALS has to be atop that list. It became famous for making Lou Gehrig a martyr and, somehow, a sports hero, though even he said there was nothing heroic about showing up at work every day.
No, real heroism arises after the farewell speeches. ALS robs sufferers of their ability to reach, hold and touch, so they can’t hug their children and grandchildren. It eliminates their mobility, so they wind up in wheelchairs or rockers, looking up at the pity flowing down onto them. And later, when every other motor function becomes a memory, ALS moves in on the lungs, resisting sufferers attempts to expand them.
My aunt once told me, in the rasp that had replaced her speaking voice, she felt as if she was always exhaling, always wondering whether her next breath would ever come. Her mind operated on two frequencies: in and out. That is, until her grandchildren were in the room. She felt then that her suffering was justified.
On Tuesday, my Uncle Les roused Joyce from her night’s sleep and prepared her for the day. He lifted her out of bed, helped her use the bathroom, bathed her and dressed her. He had learned to primp her hair, and she said he was doing a pretty good job at it. Then he made breakfast for both of them and sat at the edge of the kitchen table feeding her — one bite for her between every two bites for him.
This whole process from first kiss to last bite took nearly three hours, and it exhausted both of them. So Les carried her to the rocking chair about 12 feet distant, tucked her in and kissed her again. “I’ll be in the next room taking a nap, too,” he said.
It’s an old rocking chair with velvet flowers on its cushions and bare wooden arms. I used to sit in it to do college homework while babysitting my cousins Jennifer and Cynthia. Long before that, when I used to imagine rocking chairs were horses, I rocked back wildly and tipped the chair over with a crash. The frame fractured and thereafter the chair squeaked when it rocked — a raspy squeak much like my aunt’s enfeebled voice.
The chair sits at an angle to the rest of the furnishings so that the person in it can glance to the right and see a collection of family photos — baby pictures, graduation pictures, wedding pictures — atop a desk transformed long ago into an oversized photo album. Informal snapshots stick out at all angles from the frames of formal portraits, and they’re all of smiling, laughing, playing children. I imagine that Joyce, her head lolling right on an almost useless neck, could see the smiles, hear the laughter in her mind, and agreed that whatever happened next was justified.
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