“Something was stolen from us last night,” Chris says. Her statement, apropos of nothing, silences the room. My brother and I look at each other. From my seated position on the floor of the TV room, I look up at Chris and my mother sitting together on the couch. My mother watches her lover. As usual, she will let Chris do the talking. Chris stares straight ahead, her eyes hardened. She seems to be searching for her next words. I lower the newspaper into my lap and look again at my brother, who’s sitting in the recliner, his long legs folded together over the arm of the chair. He holds the sports section aloft, as if he were about to perform for us a magic trick. Then he swallows and folds the paper flat. The silence between the four of us stretches uncomfortably until I am compelled to break it.
“What was it?” I ask.
Chris turns her gaze to me and smiles, but it’s not a smile of warmth. It is the smile she steadies herself with when angry. I know not to smile back.
“A condom,” she replies. She does not blink.
My brow furrows. “A what?”
“A condom.”
I glance over at my mother, who is nodding. She places her hand on Chris’ knee, and the gesture pisses me off. “Wh..what…” I am failing to comprehend what Chris is saying. “Where was it?” I ask, rather pointlessly.
“In my purse,” Chris says. A slow chill descends into my gut. Obviously my brother and I are the prime suspects. A flush of guilt, instinctive and automatic, colors my face. But I haven’t done anything.
I look over at my brother. His eyes are shining, the wheels’ machinery spinning within.
“Yeah,” my brother says. “I had one stolen, too.”
All eyes turn to me. I sit there, speechless. Then my mother picks up the phone from the table beside the couch. She does this slowly; as the ALS has already begun killing off her motor neurons. She turns the receiver over, holding her index finger over the buttons. With steadied focus she aims her fingertip and pushes a series of numbers, and the flat melody of their tones is the only sound in the room. There seems to be a lot of numbers. “Must be long-distance,” I think. Chris turns her attention to my mother.
“Susan, who are you trying to call?”
My mother lifts the receiver to her ear. “My father,” she says. Only it sounds more like fa-her, her weakening tongue struggling over the word. There is the distant sound of ringing, then my grandfather’s voice.
“Hello?”
My mother attempts to speak, but her words are garbled. I imagine my grandfather standing with a cup of Sanka in his kitchen. He sets the cup down on the counter and fiddles with his hearing aid. “Hello, who is this?”
She tries again, a longer sentence from which I can extract not a single word. As Chris reaches for the phone, I wake up.
///
I remember in the dream cursing to myself; “Fuck, I forgot to get her a Mother’s Day gift.” But of course she’s been dead over a year. In fact, her father had already been dead years before her ALS diagnosis. Within the flickering light of my subconscious, a spirit attempting contact with another spirit, reaching into the past. What did she want to tell him?
///
When I first learned about my mother’s diagnosis and about the full extent of ALS, I turned with fury to Chris and said “Who the hell thought of this disease?” As though someone were responsible, someone had channeled all of their delicious cruelty into its creation.
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s disease,” is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.
My mother, however, was not among the vast majority. She had a very rare type that included Parkinson’s and dementia. I felt, and sometimes still feel, that someone had to be responsible, someone had cursed us.
The disease first killed the neurons that affected her speech and swallowing muscles. Dinners became white-knuckle affairs, for it was virtually guaranteed that she would choke on her food. Eventually we had to accept that a feeding tube inserted in her stomach was the only safe way for her to eat. Surgery number one. But as the deterioration progressed, she would choke on her own saliva. Then the worst; the trachesotomy, a hole cut into her throat, her windpipe sealed off from her mouth, the vocal cords cut, my mother never to make another sound.
The neurons that affected the movement and strength of her arms and legs were failing as well. My mother and Chris had run over twelve marathons together. They had hiked through Thailand and Alaska and to the peak of Mount Kilimanjaro. Their circle of friends, all lesbians, had years ago formed a runner’s group, calling themselves “Dangerous Curves.” No longer able to run, my mother was forced into a new role; one of loyal fan.
I know that she mourned the loss of her physical life; the running and the travel and the dinners out. But for me the hardest part was the loss of the mother I knew, the woman who loved long conversations about dreams and emotions. The first person I’d call with good news. She had become so quiet. The disease stripped her of more than her voice; she rarely initiated conversations, answering questions with one or two words scratched out on little yellow legal pads. I assumed it was the dementia, which didn’t seem like the confusion of Alzheimer’s. Rather, it seemed to just simplify her. She recognized her loved ones, but her focus and attention span narrowed considerably. The woman sitting silently beside me in the car was still my mother, but she had changed so much so quickly that our times together were painful; it seemed I could never engage her in conversation, I couldn’t hold her interest. It took me months to learn to enjoy her quiet companionship, though I would never completely accept the continual deterioration, the series of losses that were slowly erasing her.
One summer afternoon Chris and one of her running partners were doing a fifteen-mile run. My mother and I drove ahead on the route, stopping occasionally for water breaks, my mother offering the bottles with a hug.
At the third scheduled stop I parked under a canopy of trees stretching over a quiet residential street in Saint Paul. “I think we’re a little early,” I said, turning to her. She nodded, but then unbuckled her seat belt and reached for the door handle. “Are you sure you don’t want to stay in here for a bit and wait?” I asked her. She just looked at me, smiled a little, then climbed out. She took a bottle of water from the trunk and then walked slowly back to the main road, fifty feet from where we had parked. I watched her walk away in the rearview mirror. She set the bottle down on the sidewalk and stood there at the corner, facing the direction from which Chris would come. She folded her arms across her chest and stood there, and I was seized by sadness and anger. Sadness at the sight of her, standing there alone while the traffic rushed by, so focused, so loyal to the woman who had loved her for twenty years. And pissed, that she was so different, that she didn’t want to sit with me. I thought of going to her and keeping her company, but I knew she would continue to stare off in that direction, searching the distance for the runners.
I turned the radio on, some Top 40 station was playing Destiny’s Child, and I listened to the song while I watched my mother in the rearview mirror.
Ladies leave yo man at home
The club is full of ballas and they pockets full grown
And all you fellas leave yo girl with her friends
Cause its 11:30 and the club is jumpin’ jumpin’
I snarled at the song’s stupidity; infuriated by the inane lyrics. It was a pleasure to hate, it felt good, to stew in my fury. The world’s perpetual ignorance, the insistence that the party must always go on, that every man needed a woman. I laughed in derision, mocking the vapid, shiny girl group and the clueless world of bar culture, where I had spent so many nights. There was before, and there was after. When I heard the words life expectancy averages two to five years from the time of diagnosis everything began to change, and I mocked the world for not changing with me.
I watched her in the mirror, standing there, arms crossed over her chest. The song’s chorus repeating endlessly. Watching her wait, watching with envy her singular devotion, turned not towards me but away. I blinked, tears welling up hotly, but then just as quickly they were gone. I thought of going to her, but I didn’t.