“With this disease we rely a great deal on the process of elimination. The tests your wife went through rule out the other disorders we might suspect with her symptoms—” he counted them off on his fingers “—Parkinson’s, multi-infarct dementia, Pick’s disease…”
John had been doing his own research on the Internet late at night after Ellen had gone to bed. These names were all too familiar. It had seemed that for each new disease he’d read about, he found a paragraph that seemed to describe Ellen’s symptoms perfectly. Before, he’d skimmed over words like senility and dementia. Ellen was too young for those words. But now he had a name—a label to put on all this craziness. Alzheimer’s.
Dr. Gallia continued. “We can’t detect any evidence of a stroke or hormone imbalance. Of course, as I said, though we’ve made great strides, Alzheimer’s still cannot be confirmed definitively except by autopsy. But your wife’s test results pretty much exclude any other possibilities. I think we’re looking at a solid case of Alzheimer’s here, with the only variable being the early onset.”
John watched the doctor in a state of shock, detached from the scene…everything seemed to be in slow motion. Dr. Gallia took off his glasses, rubbed the bridge of his nose and sat with his head bent for so long that John began to wonder if he was fighting his emotions…or if he’d gone to sleep. But when the doctor looked up, his expression was matter-of-fact. He picked up a prescription pad, writing as he spoke.
“I’m going to refer you to the Alzheimer’s Association. It is an excellent national organization that was started right here in Chicago. They can recommend some books and other literature that will be helpful. They also have a number of support groups in this area. At some point I think you will find it very helpful to speak with others who are going through the same things you will be.”
John was numb. He felt his heart begin to beat erratically in his chest, and the color drained from his face. He stroked Ellen’s hand and managed to blurt out a few rudimentary questions while she sat seemingly oblivious.
“Where…where do we go from here? Isn’t there some sort of medicine, some drug you can give her?”
The doctor nodded, pulled a prescription pad from the pocket of his lab coat and began scribbling. “Yes. I’m going to give you a couple of prescriptions she can start.” He rattled off the names of the drugs and some instructions that may as well have been in a foreign language for all John understood.
“The clinical trials on some of these newer drugs are promising.” Dr. Gallia leaned toward him, warming to the subject. “A lot of progress has been made even in the last five or ten years, and researchers are much more optimistic, but the outcomes vary widely from individual to individual. We’ll just have to see how she responds. Don’t expect a miracle.”
John was incredulous. “But…there has to be some therapy or—something else we can do…”
Dr. Gallia sighed deeply, the first sign of empathy John had seen him exhibit. He pushed a button on his telephone and within a few seconds the nurse who’d ushered them in to the office appeared. “Mrs. Brighton, could you go with Carol to the waiting room, please?”
Panic crawled up the back of his throat. He stood, and Ellen echoed his movements.
“Follow me, Mrs. Brighton,” the nurse said cheerfully.
Ellen did so, as if she were a robot taking an order.
When the door closed behind them, John slumped back into the chair.
Dr. Gallia placed his hands together and steepled his fingers under his chin. “Mr. Brighton, what you can do is take your wife home and enjoy the next days and weeks and months as much as possible. Try to keep life as normal and routine as you can. Above all, don’t fall into the trap of treating her like an invalid. There will be plenty of time for that later. See to it that she does everything she can possibly do for herself for as long as she can. It may be helpful to seek counseling for both your wife and yourself. This is a very difficult disease to deal with. Certainly if you want to try some physical therapy or speech therapy when the time comes, you have every right to do that, but my personal opinion is that those things are basically a waste of valuable time.”
He paused to let his words sink in. “I won’t lie to you, Mr. Brighton. This is not a pretty disease. You must accept the fact that over the next few years your wife is going to change drastically. Of course, we can’t predict how quickly the disease will progress. It varies greatly from one person to the next.”
The truth slowly began to register. John stumbled to his feet and stood behind his chair, clutching its back for support. “But surely there must be something you can do!”
John started to pace back and forth in the tiny space in front of the doctor’s desk. Panic rose in his throat. His hands grasped at the empty air as though he could pull an answer from its nothingness.
He was met with Dr. Gallia’s calm, clinical reply. “At some point we will probably prescribe tranquilizers or possibly an antidepressant, depending on the direction the disease takes with your wife. There are always new experimental drugs in the works, but as far as a wonder drug, I’m sorry, there just isn’t anything yet.”
John abruptly stopped pacing. “What…what caused this? Why Ellen?”
“We don’t know. Some studies seem to indicate…”
But John wasn’t listening. His mind raced, and he interrupted as a new thought pounded into his brain. “Is this…is it terminal?”
“Alzheimer’s causes actual disintegration of the tissues of the brain, so yes, in that sense it is terminal. And there is no cure. Of course, every case is different.”
“How…how much time does she have?” He couldn’t believe he was asking this question. Couldn’t believe he was getting this news.
“Each case is different,” the doctor said again. “I don’t ever put a time frame on it, but generally we see patients surviving anywhere from five to fifteen years, possibly a bit longer, though frankly, that is no blessing. Quite honestly, when early onset is a factor, the survival time is sometimes shorter. In any case, it’s often infections—pneumonia and such—that cause death in these patients, especially after they have become bedridden.”
“I know I’ve given you a great deal to think about, Mr. Brighton.” Dr. Gallia stood, tacitly dismissing John. “Please get in touch with the Alzheimer’s Association. They will be very helpful in answering your questions…and it’s understandable that you will have many questions.”
“When…when do you want to see her again?” John was grasping at straws. He wasn’t ready to be dismissed. He couldn’t deal with this yet. How could he face Ellen with such devastating news?
“I don’t see any reason why your own physician—” he leafed through the chart “—Dr. Morton, isn’t it?”
John nodded.
“He can monitor your wife’s prescriptions and answer any questions you have about that. Unless she gets sick, there’s really no reason for her to see a doctor more often than her regular checkups. Of course, if she begins to decline rapidly, or if you feel she would benefit from antidepressant medication or sedatives, then you may want to have her reevaluated.”
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.
Chapter Eight
Ellen 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 silenc
e. 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 w
ay. 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.”
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