Chapter Twenty-Eight
Twenty-Eight
Joseph
December 2000
She is quiet in the car on the way back from the doctor. The radio clicked off, heat blasts through the vents. The drive home after each visit has been silent, racked with worry, questions, the desire for answers coupled by fear of what those answers will cost. We turn down Sandstone Lane; at Bernard Beach the waves stop short of a fresh blanket of snow, the strip of sand in between smooth and dark, a desolate bridge between crusted-over ice and steel-colored surf.
“It’s good we caught it when we did. Now, well, at least we know.” I rest my hand on hers, and it trembles beneath my touch. “We’ll get through this. It will be okay.”
Her mouth tightens the way it does when she tries not to cry, but a few tears leak out, slide down her cheeks.
I know she must be thinking about her mother, who had a different disease, but one that ripped her apart at the seams in the same way, stitch by stitch. Who screamed and threw things at the nursing staff. Who lost track of time and faces and conversations in the middle of speaking, who became like a child once more, alone and timid and afraid.
That won’t be Evelyn...so many people live with this for years, for their entire lives, there are medications, the doctor said, things to help with the symptoms. An abnormal case, he said, but caught early enough... stage one .
It started with little things, things that were nothing really, considering our age. Soreness in her neck and back. Difficulty sleeping. Forgetfulness. Evelyn is seventy-five, I’m nearly seventy-eight, our bodies don’t cooperate like they used to, they aren’t supposed to. My leg seizes up at night. I can’t read without glasses. Some mornings I spend on and off the toilet. We thought Evelyn’s symptoms were natural. Our friends, too, complain of insomnia, losing their keys, aches and pains, it was nothing to worry about.
But she began to lose track of time, of names and places, of conversations she was present for. She fell asleep at midday and paced the halls at night. And then, the tremor in her left hand began.
The doctors refused to label it at first. They did not want to diagnose her until they ruled out some things that imitate it. Stroke, Alzheimer’s, multiple system atrophy. Each scarier than the last. We saw a neurologist who specialized in movement disorders. There were so many doctors, brain scans. MRI. Blood work. Endless tests.
Evelyn has made me promise not to say anything to the children about the appointments. Not until we know more, she said, she didn’t want to worry them. Not until we have answers. Then, not until everyone was together. Not before Christmas. Not at Christmas. Not until she is ready. Evelyn hides her tremor under blankets, sweaters, tables, tucks her hand beneath her thigh, anything to keep suspicion at bay. Here and there the children have shown concern to me privately, asking vague questions I bat away, grasping at clues to a riddle none of us wants solved.
Evelyn’s expression when the doctor told her, when he put a name to what she would fight for the rest of her life, was one I had seen before, when I came home alone to find her at the front door of the inn. A mix of fear, anger, disbelief. It was a look I prayed to never see again.
Based on the test results, and the evaluations, we can say with confidence what we believe you are dealing with. There are medications we can try...
Evelyn sank further into herself the more he explained, her face hardened to an iron mask. He spoke out of one side of his mouth when he talked. He vaguely resembled an untalented puppeteer. In this way, I could almost convince myself this was a show, and we were the audience. He was speaking about someone else. The word Parkinson’s did not have anything to do with my wife.
Parkinson’s disease... But this was Evelyn. My Evelyn. The same Evelyn floating on her back in the ocean, painted toes poking through the surface. Evelyn, smooth and naked beneath our sheets. Evelyn’s slender fingers commanding the ivory keys of the piano. I couldn’t match the word Parkinson’s to our life together. It did not fit.
The tires crunch along our driveway, leaving tracks in the snow, and I ease to a stop and turn off the ignition. The silence is louder without the hum of the engine, the whirr of the vents, the rolling tires. Neither of us makes a move to go into the house. As if staying in the car will keep what we now know trapped inside, as if we can suppress it as long as we don’t open the doors.
Evelyn speaks for the first time, so faint I almost can’t hear her. “I don’t want to live as less than I am.”
The doctor’s droning voice, There are five stages of Parkinson’s, but based on your symptoms you’re advancing quicker than normal...
“I know. We have time before we need to worry.”
“I can’t live as less than I am.”
I fake strength as she falters. “We’ll face it as it comes.”
It will continue to progress...
She shakes her head, irritation ripples beneath her calm. “You’re not listening, I don’t want to face what comes. Who knows how long I will be good to you, to anyone?”
“Don’t talk like that.”
“You saw how my mother was...” She breaks off. “I can’t live that way, I can’t.”
“That was Alzheimer’s.”
Evelyn softens. “Semantics, Joseph. This will take me away the same. Maybe worse.”
“But you’re stronger than your mother. A lot of people live with this for a long time...maybe with treatment, medication you could fight it. We’ll get through it together.” My voice catches on together .
“There’s no getting through it . I’ll keep getting worse, and fast. You heard the doctor. I don’t want to put you through what’s to come.”
“What are you saying?”
“I think maybe I’ll live out this year—” she pauses, her voice a whisper “—and that’s it.”
“What are you talking about?”
“One final year.”
“Don’t joke.”
“I’m not joking.”
The heat begins to dissipate in the car, my breath visible when I exhale, unsure how to respond, my assurances weak and forced, edged out by looming dread. I think of my father, after my mother died, how he stared out the window, a phantom drifting through the deserted inn. How his grief took him once she was gone, a merciful death, his hell the lonely cavern shaped by her absence. “I don’t want to live without you.”
“It’s better than watching me fall apart—either way you lose me. I don’t see a better way.”
I knock my knuckles together in my lap, wield my helplessness like a dull blade. “Well, then, I’ll go with you.”
“Don’t be ridiculous. You aren’t sick.”
“I don’t care. If you can talk crazy, so can I.”
“It’s not crazy. I don’t want our children to know me like that, it’s not how I want to be remembered. I don’t want you to see me...” Evelyn drifts off and tears begin to trace the same tracks, slide off her chin down her neck. “I don’t want it to end that way.”
I stroke her hair, and my eyes swim. “And I don’t want it to end.”
She whimpers, “I’m scared.”
“It’ll be okay.”
“Forget what I said. I’m sorry.”
“I know. I’m scared too.” I hold her then, my heart a pounding fist, the center console digs into my hip. My mother’s tumor. My father’s empty eyes. I hold her tight enough to fight the tremors, to shield us from the truth closing in, our fears the dark clouds before the storm surge.
One final year echoes through my mind.