Authors: Deborah Raney
John slammed his fist into the palm of his other hand, wishing it were a wall.
Gets sick?
Good grief! What was wrong with this man? Couldn’t he see that she
was
sick? How could he calmly sit here and tell him that his Ellen—his sweet, beautiful Ellen—was going to die a slow, horrible death…was going to mentally rot away? And there wasn’t a blessed thing he could do about it.
His anger threatened to explode in physical violence. He clasped his hands in front of him and willed himself to calm down. He had to face Ellen on the other side of this door, and he couldn’t do it in anger.
He took a deep breath to compose himself. He gave the doctor a curt nod and left the room, closing the door behind him.
E
llen was waiting for him in an alcove of the waiting room. She stood and walked to meet him by the elevator. They rode to the lobby in silence.
So much silence between them now.
It nearly killed him.
He drove home while she dozed in the front seat beside him. Watching her, he remembered a long-ago day when he’d felt equally desolate—the day he’d brought Ellen home from the hospital after they’d lost little Catherine. Ellen had slept on that trip, too, as if slumber could shut out the tragedy of what had happened.
But that was different. After Catherine’s death, joy had returned to John and Ellen threefold in the precious lives of their other children. The hum of the tires on the highway hypnotized him as his thoughts returned to that tenuous time. It hadn’t been an easy road back to happiness.
She had seemed so strong in the first days after Catherine’s death. But when they returned to their classrooms, and life resumed its routine, a gloom had enveloped her. For months she seemed immersed in a dark depression that threatened to drown John, too, as he struggled to pull her out of its murky waters. She went through her days at school like an automaton. She’d made an obvious effort to be cheerful for John’s sake, but her laughter rang false, and he would often find her staring into nothingness, oblivious to his words and his comfort.
Sometimes when she didn’t know he was near, he heard her cry out to God, begging to know why he had taken their innocent child.
The doctor had said they could try for another baby after three months, but when that time came and John broached the subject with Ellen, she tersely said she wasn’t ready yet, and closed the topic by leaving the room.
As the days passed, he’d begun to fear she would never recover. More and more, her behavior reminded him of his mother’s in the days after his father had left them. The same vacant stare, the same self-absorbed manner. Ellen seemed indifferent to his personal grief as had his mother to his adolescent misery. But he could not find it in himself to be angry with Ellen. He knew that, though he felt the loss of their child deeply, his heartache was more akin to disappointment—the death of a dream. He had not carried their child under his heart for nine months; he had not felt her tiny arms and legs fluttering inside him. He had not suffered the travail of giving birth, only to have the reward of such pain snatched away so cruelly. How could he deny Ellen license to rail against whatever had willed her this cross? So he kept silent. And the silence was a brash echo in their little apartment under the eaves.
But a year after they had buried Catherine, Ellen was pregnant again. Once more, the pregnancy had not been planned, but John hoped beyond hope that this baby would bring back the glow to Ellen’s face.
For the first few months Ellen’s eyes were filled with fear, but suddenly as if a dam had broken, instead of holding her feelings inside, she lay awake late into the nights talking and talking with John. As Ellen confided her darkest fears to her husband, he watched them evaporate like dew in the sun, to be replaced with tiny buds of hope.
That such profound sorrow could be replaced by such great joy was a mystery he would never truly comprehend. But perhaps one could not feel happiness with such depth if one had not first known the fathoms of anguish.
The night Jana Beth’s first lusty cries filled the delivery room, and the doctor placed the baby, whole and perfect, on Ellen’s belly, John watched the last remnant of her grief vanish. It was as though Ellen herself was the one newly born—hope giving full bloom to joy. Though she confided to John that she would never truly understand why Catherine had been taken from them, Ellen acknowledged that Jana’s birth had restored her faith in the God to whom she had entrusted her life. And now she ran confidently back into His arms.
Shortly after Jana’s birth, John had applied for a position as Calypso’s elementary school principal. It was a coveted position, and he had little hope of even being considered for the job. To their amazement, he was offered the job with only one stipulation—that he take a few courses at the university to comply with the qualifications. Ellen and John were elated. Not only would he have a job in the suburbs, but he would also have financial assistance in working toward the degree he had planned to get anyway. And the new salary would boost the meager bank account they had struggled with since Ellen quit teaching to be home with Jana.
They’d borrowed three thousand dollars from Howard and MaryEllen to put a down payment on a little house three blocks from Oscar and Hattie’s. The house needed painting inside and out, and the yard was a tangle of weeds, but it was structurally sound and, more importantly, it was theirs. They spent their weekends raking and seeding the lawn, and by the time school started, the grass was green and lush and the backyard had been enclosed with a rough board fence. The inside of the house could wait until winter.
Now as their precious little girl toddled across their hearts, another little life waited to make entrance into their world.
Brant Allen Brighton was born in January, and much to their surprise, Kyle Andrew had followed along only fourteen months later.
Now, as John turned onto Oaklawn and their house came into view, his mind churned with thoughts of what the future might hold for them. He tried to will the awful visions away, but it was a physical battle. He touched the cloth of his shirt, shocked to realize that he was drenched in sweat. His breath came in short gasps. What would they do? What would he do without Ellen?
He turned to watch her. She was still asleep, slack-mouthed beside him. He was unable to fathom that inside the beautiful head that lay on his shoulder each night—the head he cradled so tenderly—a vile thing was eating away at her brain. It was incomprehensible. It had to be a bad dream. Surely he would wake up, and they would laugh together about it as they had often laughed about each other’s silly dreams.
As he pulled into their driveway, Ellen instinctively woke up. Without speaking, they carried the paraphernalia of the day’s trip into the kitchen. Ellen puttered around the house, hanging up jackets and putting receipts in the desk drawer. She went to the sink and began washing the few dishes left there from breakfast. John watched her perform these mundane chores with new eyes. How long would she be able to do these simple, homely things?
Like a tidal wave, an overwhelming love and tenderness welled within him for this woman—his wife. He went to her as she stood at the sink and wrapped his arms around her, resting his chin on the top of her head. Her hair was disheveled from sleeping in the car, and her skin was damp from the steam of the dishwater. She turned to him, put her arms around his waist, and laid her head on his chest, uttering two simple words: “Tell me.”
John fought to control his emotions. “It…it’s Alzheimer’s, Ellen. At least it’s not any of the other things they tested you for, so they think that’s what it has to be.”
Calmly, as though it were a relief to finally have a name for this intruder, she sighed. “I thought that’s what you were going to tell me.”
In her moments of clarity, Ellen had been researching, too. John knew she had tried not to look very far into her future, but words like
dementia
and, yes, even
Alzheimer’s,
must have danced disturbingly through her mind in the past weeks and months as she’d leafed through health magazines and searched the Internet.
“John?” Her voice sounded strangely serene. “How long do I have?”
“They don’t know, Ellen. There’s no way of knowing. And there are promising new drugs that might help. We’ll get the prescription filled tonight that Dr. Gallia gave us and get you started on it right away and—”
She put her hands on either side of his face. “I want the truth, John.”
Oddly, she’d never seemed so sane, so much herself. He sighed. He wouldn’t play games with her. She deserved the truth. “Things will probably get…they will get progressively worse. We can’t know how quickly that will happen, or…how long you have.” He couldn’t bring himself to tell her what the doctor had said: five years, ten years, possibly fifteen. But those extra years would be no blessing.
Ellen began to cry. With tears streaming down her face, her voice quivering, she wailed, “Oh, John! I’m so sorry. I didn’t want it to happen this way. I always pictured us growing old together…enjoying our grandchildren…and even great-grandchildren.” She gave a little gasp. “Oh, the kids…how will we tell the kids, John?”
He opened his mouth to answer, but she spoke first. “I guess they already know something’s wrong with me, as crazy as I’ve been acting lately.” She breathed out a harsh chuckle. “It’s funny, but it’s kind of nice to know I’m not losing my marbles…well, I am, but at least I have an excuse.”
She was more lucid than John had seen her in weeks. He felt an urgent need to tell her all the things he loved about her. But how did you tell someone that they are life itself to you? How did you say goodbye when there is no leave-taking? Yet they might not have another time to say goodbye. There might not be another day when she would understand his words of love. And so he ventured to speak what was beyond words.
He led her to the darkened living room and laid a fire in the fireplace while she watched in silence. She sat down on the sofa, but John sat on the floor in front of the hearth and pulled her onto his lap.
“Ellen…” His voice faltered. He stroked her temple and traced the lines that so many years of smiles had etched on her face. “Ellen, I love you with all my heart. I never knew a man could be so happy and so utterly content until I met you. Do you know how happy you make me, El? You mean everything to me…
everything.
”
He stopped, not trusting his voice. But the need to spill everything that was in his heart persisted, and he went on. “I don’t know what this is we’re facing now, but if it means losing you I’m not sure how I’ll go on. Whatever happens, El, I don’t want you to be afraid of anything. No matter how awful it might get, I’ll be here for you. We’ll…”
He started to say, “We’ll beat this thing,” but he knew better, and he knew that she knew better. He wanted to keep things honest between them. They had never kept secrets from each other. “We’ll get through this,” he said finally. “Somehow, we’ll get through it.”
She reached up to press her palm to his cheek. “Oh, John, if I died tomorrow, I’d have no regrets.” Her voice was beautiful in his ear—low and husky and familiar.
A glint of fear came to her eyes and the corners of her mouth turned down. “But…I’m afraid of living beyond tomorrow…. Oh, John. I’m going to be such a burden to you and the kids. I…I love you, John. I love you so much…so very much. And I know with all my heart that you love me, but I’m terrified our love won’t survive this…this monster!” Her voice rose a tremulous octave and she grabbed tufts of hair at the side of her head and yanked. “I feel…possessed! I’ve never felt so out of control like this before. It terrifies me! Oh, John, I’m so scared.”
“Shh, shh…” He held her, stroking her hair until she calmed down. And they held each other that way, praying together, drawing strength and comfort from the physical embrace and from the presence of the God they knew and trusted, even though they didn’t understand.
As the fire in the hearth waned, their embrace turned to passion. They drank each other in, making love unhurriedly, but with fervid insistence…with sweet familiarity.
Afterward, John brought a quilt and pillows from their bed. He stoked the fire, and they slept on the floor in front of the hearth until the harsh light of morning flooded their pallet, and the embers grew as cold as the reality they woke to face.
J
ohn stood at the fireplace gazing into the fading embers of the first fire of autumn. One by one, the sparks grew faint and died. It seemed rife with symbolism.
Dr. Gallia’s words the previous spring had proven prophetic. As the months passed, John had watched Ellen fade before his eyes. Her memory losses became more frequent and more glaring with every week that passed.
Ellen had always loved to cook, but now, most days she could no longer remember even the simple recipes she’d made from scratch since she was a young girl growing up on the farm.
She would try to tell John about a phone call and come up completely blank. She could tell him someone had called, and that it was important, but she couldn’t remember what the message was about, or whether it was a man or a woman she’d spoken to. She tried writing down phone messages, but too often the jumbled scribblings on the notepad failed to give John—or Ellen—a clue about the call. Sometimes he wondered if she was remembering a call from last week—or worse, if the calls were all in her imagination.
After missing half a dozen important calls, John finally bought an answering machine. But he couldn’t make Ellen understand that she should wait to see who was calling and then decide whether to answer the call. The first time John called, Ellen answered on the second ring.
“Ellen.” He tried to keep the impatience from his voice. “I thought you were going to wait and let the machine pick up.”
“But it’s you, John. Why did you call if you didn’t want to talk to me?”
“But what if it hadn’t been me? That’s the whole point,” he explained patiently, “so you can let the machine take the call after you find out if it’s me or not.”
“But…but it is you,” she stuttered.
He laughed in spite of his frustration, and tried to explain it to her again.
“But what if one of the kids tries to call, John?”
“You can pick up if you recognize their voice, Ellen.”
“But…I won’t know it’s them unless I pick up.”
“Yes, you will, Ellen. Don’t you understand how an answering machine works?” He felt his blood pressure rising. “It’s like your voice mail at work.”
“What do you want for dinner?”
He sighed. She’d taken to changing the subject whenever she got frustrated. It was a challenge not to let his exasperation match hers. An answering machine was apparently too confusing and complicated for her. He let it drop.
“We could eat out,” he said. “Maybe you’d like to call someone to go out with us?”
“Oh! I hadn’t thought of that. We could have those people…you know…those people from church…”
“What people?”
“You know. The ones we like so well.”
“Rob and Cathy?” Lately the names of even her closest friends seemed to escape her, and though she could usually conjure them up eventually, increasingly her conversations had become erratic and bizarre.
“Is that their names? Rob and Cathy?”
“Yes, honey. You know that. Rob and Cathy McLaughlin. We’ve known them since the kids were babies.” He bit his lower lip. He wasn’t sure he was up for socializing, especially if Ellen was in one of her less lucid states.
“I’ll get my coat.” The phone went silent and he guessed that she was already headed for the hall closet. He wondered if she would remember what she was looking for by the time she got there.
Almost comically, John started finding things in the strangest places. A pencil in the toothbrush holder, a slice of toast in the desk drawer by the telephone and a stick of butter—thankfully still in its wrapper—in his sock drawer. He had to laugh at that one. Even Ellen had seen the humor in it, though she was angry when she heard him laugh with Brant about it on the phone.
They hadn’t yet told the kids about the diagnosis. “I don’t want them worrying,” Ellen had told John the last time he broached the subject. John had to respect her wishes, but he knew that the children were worried and puzzled by the changes they saw in their mother. They had caught her in some of her silly mistakes.
“Maybe they got a little carried away with those highlights in your hair, Mom,” Kyle had said when Ellen had put ketchup on the table with the pancakes one morning when he was home for the weekend.
“Huh? What are you talking about, Kyle?”
“A little too much blond in the mix, maybe? Get it?” he joked, wiggling his eyebrows Groucho Marx style.
“Oh, Kyle, stop.” Ellen smiled, but John sensed the tears were threatening.
John pulled Kyle aside later. “Hey, bud, go easy on Mom, okay? She…she’s got a lot on her mind right now.”
“Hey, I was only kidding.”
“I know, but…just take it easy. She’s a little emotional right now.”
“Yeah, okay. Sorry.” Kyle shrugged and looked at John as though he was the one losing it.
He tried to prepare Brant and Jana for the news, too, dropping little hints about Ellen not feeling well, and having a lot on her plate. But they were busy with their own lives, and he wasn’t sure they caught the concern in his voice.
There were brief intermissions—sometimes lasting for days or even weeks—when Ellen seemed to be her old self. During those times, John found himself hoping it had all been a terrible mistake. Maybe the doctors were wrong. Maybe this was something else. Maybe it was all a terrible mix-up and she was getting well after all.
It amazed him that he could be so devastated when the symptoms returned. It was like finding out about the Alzheimer’s all over again. He almost wished those little remissions wouldn’t occur, because the telltale warnings always came back, and when they did, they seemed worse than before, usually bringing some new loss of memory or function.
Sometimes she just lost words. She would be talking along making perfect sense, when suddenly she would stop midsentence, unable to think of the next word she wanted to say. Often, John could supply it for her. They’d always finished each other’s sentences. But more and more she lost words that he couldn’t find for her. And she would become agitated when he reeled off a multiple-choice list.
Unfortunately, the answer was often “none of the above.” Occasionally, if he was patient and allowed her to concentrate, she could dredge up the word. But most times she would wave him away, leaving the thought unfinished and both of them feeling frustrated.
More disturbing, John noticed that she had begun to use completely nonsensical words. Sometimes she was aware that what she said hadn’t made a whit of sense, and she could backtrack and find the right word, the right phrase. But most of the time she seemed unaware that she had spoken amiss. If it hadn’t been so tragic, it might have been comical.
One October evening, while she and John were watching TV in the den, she turned to him, eyebrows arched, fire in her eyes. “I don’t see why these donney on the brackers!”
“What?” John asked, looking at her askance.
She sighed and slowly articulated, as though speaking to a half-wit, “I don’t see why these donney on the brackers!”
“Ellen, I don’t have the faintest idea what you are talking about.” A sinister warning bell clanged in his subconscious.
But she laughed and wagged her head like a dog shaking dry after a bath. “Well, I don’t either, John.” She started giggling. It was a contagious, bubbling laughter, and John had to laugh with her. They laughed till they were holding their bellies and wiping away tears. Then abruptly Ellen’s face contorted, and her guffaws became sobs—maniacal, bellowing sobs. Within seconds, she was hysterical and inconsolable. Alarmed, John tried to put his arms around her, but she shoved him away with a strength that surprised him.
When she finally quit thrashing, she hunched on the sofa hugging her knees to her chin, rocking back and forth, weeping uncontrollably.
John felt like a spineless coward, but he could not stay in the room with her another minute. He backed away, grabbed his jacket off the hook in the front hall and fled into the chilly night.
The street was dark and a light mist dampened the pavement so the streetlights were multiplied in the reflection. He jogged briskly for a few minutes. Then, out of breath, he slowed to a walk.
The streets were deserted, but he was painfully aware of the lights that burned in the windows of the stately two-story homes lining either side of the street. Here and there he could hear music floating from an open door. And through curtains, not yet closed to the evening darkness, he saw life going on as usual for those within. Businessmen read newspapers in their easy chairs; children argued over games; mothers rocked their babies. Their world—his and Ellen’s—was falling in upon them, yet all around them life went on.
Despair crept over him like a vine. What would become of them? Communication had always been the foundation of their marriage. He and Ellen had taken immense joy in discussing people, politics, philosophy, psychology. And if an exchange turned into a debate or even an argument, so much the better. They had never been happier than when they wrangled over some controversial topic. It had become a high for them, an energizer. With their words, they played an exhilarating game of catch—tossing ideas and waiting with anticipation for them to be thrown back. Now he threw words against a hard wall, and if they came back to him at all, they came back senseless and unpredictable.
There were so many things he and Ellen could have gone without—their wealth, their sight, their arms or legs.
Why?
John railed. Why did it have to be their words? And it was
their
words, for Ellen’s silences left him as impotent of speech as if he physically shared her disease.
The rage simmering in him boiled over. He shook his fist at the heavens, and through clenched teeth he shouted into the darkness, not caring who heard. “Why, God? Tell me
why!
” But the heavens were like a canyon. His voice echoed back to him through the empty street—the only answer the gentle sound of rain on the pavement.
He sat down on the curb, utterly exhausted. The rain soaked into his jeans, leaving him shivering and damp. Hopelessness seeped into every fiber of his being, and for the first time since little Catherine had died, he put his head in his hands and sobbed.
He wept till there were no tears left. Finally, he picked himself up leadenly and walked slowly back to the house. The lights were off downstairs, but the lamp in their attic bedroom still burned.
When John came up the stairs, he saw Ellen through the bedroom door. She was sitting up in bed reading—or pretending to read. John wasn’t sure she could even make sense of the printed page anymore. He came quietly into the room. He looked at her and shrugged, having no idea what he could say to her that would make things right.
She started to cry. “Oh, John. Please. Please don’t look at me that way. I don’t want to be this way…can’t you see? I want what we had before. I want my…my life back. I want…I want…oh, I don’t even know what to say…how to say it. I don’t even know…” She gave him a look of sorrowful apology. “I’m losing my mind, John. I feel like I’m losing my mind.” She grabbed her head and started rocking.
The resignation in her voice, in her posture, broke his heart. He went to her and sat down beside her on the bed. He wrapped his arms around her and pulled her into his embrace, leaning back against the headboard, cradling her in his arms.
They lay that way for a long while, until gently, wordlessly, John got up from the bed. He kissed her cheek and pulled the covers around her, tucking her in like a small child.
Then he went into the bathroom to perform his nightly ritual of brushing his teeth and washing his face.