The homes on Barbashela Drive looked full and festive that New Year’s Eve, with Christmas lights still draped on rooftop edges and wreathes still hanging from doors. Inside, families were watching Times Square festivities and making New Year’s resolutions. Some, drunk off the night and the wine, wandered outside to set off stockpiles of fireworks, their smoke and laughter condensing in the holiday air. All around the neighborhood, the atmosphere was a high buzz of anticipation.
One house was strangely silent. It might have looked empty if not for the line of cars snaking out of the driveway and down the road. The TV was turned off, and there were no fireworks, no laughter even. Just a crowd of about 20 surrounding one single figure: grandchildren and children, a husband and a wife.
The wife was lying on a makeshift hospital bed. Her eyes were closed — not peacefully but shut tight, as though she were struggling to suppress some hidden pain. She hadn’t spoken for months and months, and her family couldn’t remember what her voice sounded like. Neither could she. All she had to go by was the voice inside her head, and even then she wasn’t sure. It didn’t give her the same feeling of peace that hearing her voice out loud would have. But this was the least of her worries. Every few minutes or so, her breathing would turn shallow and erratic. When it became especially bad, a nurse would walk over and adjust the blanket. Each time she did so, the nurse would glance at her watch and wonder what would come first: the time of death or the New Year.
By the time the sick woman took her last breath, she had spent four months in that bed and almost two years withering away from the disease that would eventually take her life.
It had started with a fork. One night at dinner, she realized that the fingers in her right hand felt stiff and that the fork she’d been holding felt heavy, so heavy it dropped to the table. She looked around the kitchen to see if anyone had noticed. No one had, so she picked up the fork and began eating with her left hand.
She brushed it off at first — a pulled muscle maybe? — but it happened more and more often. One time, it was her toothbrush, the next, a knife. The knife hit the ground right by her foot, scratching the tiled floor. She barely noticed. Instead, she pulled at her fingers, begging them to unstiffen so she could cook in peace.
Pretty soon, the woman who had spent sixty years raising ten children and even more grandkids felt the weakness traveling to her legs. The only way she could get around was if she steadied herself with whatever was closest: a counter or a chair or a hand, perhaps. She had never been graceful, even in her youth, but now, she could barely walk without lurching from place to place.
After she toppled over backwards, her family rushed her to the hospital. She knew right before it happened that she was going to fall. Her husband had been helping her up the stairs when, without warning, all feeling disappeared from her legs. For a second, she thought she was floating. Then, her lower body gave way. She tried to say something, tried to warn her husband, but it all happened so fast. Now here she was, at the hospital, a nurse pushing her around in a wheelchair.
When the doctor diagnosed her with ALS in June of 2003, she hadn’t understood at first. She spoke no English and barely comprehended simple phrases, much less words as technical as “amyotrophic lateral sclerosis.” Instead of listening, she studied the doctor’s face, so smooth and unlined. The man reminded her of her youngest son, who, only a few months before, had gotten married to his high school sweetheart.
She dreamt of the wedding as the doctor continued: “… atrophy of the muscles. It is most commonly known as Lou Gehrig’s disease.” No translation was needed. All it took was one glimpse at the stricken expression on her daughter’s face before the older woman felt the familiar unsteadiness return. She laughed, and then, just as quickly, let out something between a shriek and a sob. The laugh had escaped her accidentally, and the doctor — it hurt her to look at him, he looked so much like her son — stared at her in surprise.
“So this is what it feels like to go crazy,” she thought to herself. If the disease didn’t take hold of her first, she wondered how long it would take for the madness to set in. “Soon,” she thought. “So soon.” It was clear from the way the doctor kept looking at her with pity.