My mother’s brain went to John’s Hopkins University last month. Surrounded by cold packs, the vital part of her flew to the University’s Brain Research Center. They will measure and photograph it, and cut it into translucent slices to examine under a microscope. They expect to find evidence of a rare neurological disease that shrinks the parts of the brain that control motor function. Olivopontocerebellar Atrophy makes people lose their balance; slows their capacity to swallow; restricts their ability to breathe. In the end, it caused my mother’s lungs to drown in uncirculated fluid, and then it stopped her heart.

When she was healthy and I was young, my mother threatened to haunt me after death. The warning infuriated me as an adolescent; comforted me in middle-age. Yet the air around me is silent now. No good ghost has come from this death. Nothing useful, except the chance that my mother’s grey matter might educate the scientists. We hope it will. She was an edifying person and we miss her profoundly.

OPCA is notoriously hard to diagnose because its symptoms resemble so many other diseases. For years, my mother blamed her wobbles on low blood pressure and an inner-ear disorder. By age seventy-four, she walked as if blown side to side by gusts of wind. When she was tired, she sounded as if she were speaking through a mouthful of pebbles. After she fell twice in one month and ended up in the hospital, she finally met with a neurologist. The specialist’s diagnosis was a relief – at last, a verdict that clearly matched my mother’s symptoms. It was also a burden. My mother had not planned to spend her retirement dying of a rare disease.

So, for awhile, she didn’t. My mother had trained as an actress when she was young and she retained a superb ability to choose a role that best reinterpreted inconvenient reality. She believed that the truth of any given situation was what you most needed it to be. Now, she said, she needed rest. She read the New Yorker in bed, slept a lot and ate meals on a tray served by my father, who always used linen napkins and the good silver.

On trips to the supermarket, she listed to starboard as she pushed the grocery cart along the aisles, perambulating with a stately lack of speed. At home, she negotiated the staircase from first to second floor with stubborn child steps that required ten minutes going down, fifteen minutes back up. She refused to accommodate or discuss her illness. Instead, with the airy certainty of prevarication, she told me that the neurologist had called with a new diagnosis. This time, she insisted, the OPCA would not become worse and it most definitely was not fatal. Five months later, she had a brain hemorrhage.

She came home from the hospital chastened. Yes, she would accept a wheeled walker. Yes, my father could attach a board, which he had carved with hearts, along her side of the bed to keep her safely tucked in. Yes, we could set a Link to Life emergency call button on her bedside table. She would not attempt to stand without someone else present. And yes, we could place a baby monitor beside the Link to Life. If she called out, my father could hear her. “I wear you on my hip,” he said smiling as he patted the receiver on his belt.

Several weeks later, I wore the receiver on my own hip and heard her voice – Don’t be scared, she whispered to herself, alone upstairs in bed – Don’t be scared. That night we sat together in the dark on the end of her bed as she swung her legs slowly back and forth to ward off fiery stabs of nerve damage. OPCA had exacerbated the peripheral neuropathy that my mother had battled for years. Pain was now her constant companion. She wore a yellow jersey sleep-shirt sprigged with blue flowers, one of eight nightgowns that I bought in the final eighteen months. My propitiation of impending doom. By buying one after another, I hoped to keep her alive to wear them. Her legs stilled; her head drooped toward her chest. Into the silence she murmured, “I’m not ready to die.”

I waited for her to say more. When she didn’t, I said, “I’m glad. I don’t want you to die.”

“Really?” She lifted her head, looking out at the shadows, not at me.

“Oh, Ma. Yes, really.” I spoke immediately this time and carefully hugged her frail frame.

“Thank you.” She leaned her head against my shoulder. Her legs resumed their walk to nowhere.

All these months, I had resented my mother’s refusal to discuss her illness. I wanted her to cope my way – by shining a searchlight into every dark corner. I longed to describe my weekly trolling of neurology websites and tell her about ongoing research. I believed that we could disarm the disease with data and discussion. Conquer our fear by speaking its name out loud. I had been wrong. She had named the terror and it still would hurt us. Reality offered no comfort.

My mother was a five-foot ten-inch column of elegance whose malfunctioning brain reduced her to wobbling knock-kneed behind an aluminum walker that could not keep her vertical. But for the rest of her life, even as Hospice nurses visited thrice weekly, we all agreed that she was getting better. As the months passed, she broke her nose, a rib, and a shoulder blade in a series of falls. A mysterious tumor appeared in her abdomen. Pressure sores on her left and right hips wouldn’t heal. Yet, until unconsciousness enveloped her on the day before her death, she insisted that she was improving. It was her way to go forward until she stopped.

During that final twenty-four hours, we wiped my mother’s face with lotion-dampened washcloths. As the rattle of rising congestion grew louder, we propped her high against pillows and squeezed morphine drops between her lips. Eyes closed, unconscious, she appeared to be concentrating. Sometimes a slight frown ghosted across her forehead; sometimes she seemed about to smile. On occasion, her arms floated up and down as if she were conducting a slow symphony. Her nerves were firing as the system shut down, explained our Hospice nurses, who made sure we knew what to expect. And so, when my mother’s lips no longer pressed around the morphine dropper, when the pauses between her wheezing breaths became longer than the breaths themselves, we knew. Four hours later, at five minutes before midnight, she exhaled and stopped.

Kiss her forehead. Call Hospice. Turn on every light in the house. Make tea. Brush her hair. Say, “Sorry Ma,” when the brush pulls. Throw away the morphine.

Her twelve-year-old granddaughter tidies her nightgown. Her ten-year-old grandson surrounds her with stuffed animals. When the funeral home staff arrive, they wrap her in soft white sheets and an elegant black zippered shroud that shows her face. Before they wheel her out the front door, my brother gives them the brain donation forms. Don’t delay, he says. Rush to the hospital, keep her cold; keep her fresh for the man with the scalpel.

What will they see when they slice her brain into manageable samples – midbrain tissue atrophy, a diminutive pons, loss of Perkinje cells in the cerebellum? I will be interested in the autopsy report, even grateful for it. But it cannot tell me what I really want to know. What were her thoughts those last hours as she faded into silence? Could she hear us tell her that we loved her? Feel our hands holding hers? Did she recognize that she was dying? Was she still scared?

We know that she arrived safely. The administrator of the research unit wrote a letter of condolence that thanked us for giving them such “deeply precious material.” What made her extraordinary remains alive in our memories. What slurred her speech and caused her son to pick her up and carry her when the walker failed – that was the brain, now at John’s Hopkins, being cut into paper-thin slices.

We will try anything to protect the people we love. My gift of eight nightgowns did not work. I offer up my mother instead.