He shrugged off Susan’s forgetfulness and lapses around the house, chalking it up to stress because of Mary’s death. His mind was on business only.
During a phone conversation with Susan while he was in California, they discussed an old friend that neither had talked to for years. Susan said, “I need to give her a call.”
She got agitated as the conversation went on and finally Jonathan asked, “What’s the matter?”
“I can’t find my cell phone. I’ve been all over the house and can’t find it. I can’t find it anywhere!” It was out of character for her to be so worried.
“What are you using to talk to me?” asked Jonathan.
After a brief pause, Susan sighed and said, “OK, I’m an idiot.” Though she tried to play it off, she still sounded overly concerned.
“It was in your hand the whole time, wasn’t it?” Jonathan asked.
Susan said, “Yes,” and they had a good laugh about it. He even teased her about it for the next few weeks. Until the day she called him and said she couldn’t turn on the TV. The remote just wouldn’t work.
Jonathan tried talking her through it, but they could not get in sync regarding which button was located in which corner of the remote. The longer it took, the more anxious Susan grew.
“It’s okay, Susan,” Jonathan said. “We’ll figure this out. Look at the top left corner of the remote and tell me what the button says.”
After a brief pause Susan said, “Redial.”
Jonathan laughed, and Susan said, “What are you laughing at?” He could hear the hurt in her voice.
Removing all trace of mocking he said, “I think you may be using the phone, Dear.”
“Of course I’m using the phone,” she answered with tears in her voice. “How else would I be talking to you?”
“No, I mean, I think you’re using the handheld phone instead of the remote.”
He heard silence on the line, followed by a nervous laugh. “You’re right, Jonathan.” She chuckled again. “Why in the world didn’t I notice that?”
“It happens, Honey. I’ve got to run, but I’ll call you tonight.”
“Alright. I’ll try not to answer the remote when you call.”
They both laughed and he hung up, still thinking that the stress of Mary’s death was causing the mental lapses.
One cook quit, stating that Susan was too hard to work for. When Jonathan pressed, she said Susan would make a request in the morning for the dinner menu, then change the request throughout the day. When the cook asked about the previous request, Susan denied having made it.
Instead of looking into it, Jonathan just hired a more flexible cook.
The housekeepers put up with similar eccentricities. It was easier to raise their salaries than deal with the issues.
It was Susan’s best friend, Tiffany, who first suggested she see a doctor. They had been planning a fund raiser for a food kitchen, but every time they met, Susan was oblivious to the plans from their last meeting.
Tiffany gave her the benefit of the doubt until she forgot Tiffany’s name. She let Susan squirm for more than a minute to test her. Susan never did recall it on her own. She had urged Susan to see a doctor, but not only did Susan not realize something was wrong, she couldn’t remember having been urged.
Tiffany reached Jonathan on his cell phone, somewhere south of Phoenix, and made him promise to make an appointment for Susan by the end of the week. Two days later he sat next to Susan, her on the exam table, him in the chair. They held hands when Dr. Vallenga entered to give them results.
“I suspect early onset Alzheimer’s,” said the balding doctor. “After a few more tests we can diagnose with almost one hundred percent accuracy.”
“That’s impossible,” said Jonathan. “My wife is forty-one years old. Alzheimer’s only affects old people.”
Dr. Vallenga nodded sympathetically. “Most people with Alzheimer’s start to display symptoms in their sixties, but there is a percentage, close to five percent of all cases, that are afflicted in their forties or fifties. I’ve even seen it affect people in their late thirties.”
“How do you cure it?” asked Susan.
“I’m sorry,” the doctor said. “There is no cure. The best we can do is slow the progression.”
“Money is no object,” Jonathan replied immediately. “We’ll do whatever it takes.”
The doctor just shook his head. “If left untreated a patient usually has a five-year life expectancy. Sometimes shorter. You’re in excellent overall health, Susan, but the disease is already in an advanced stage. We can start you on drugs to retard the progression of the disease, but there is no method known to reverse the damage that has been done so far.”
Jonathan had never encountered a situation that could not be dealt with if he threw enough money at it. Denial was his only option.
“Thank you, Doctor,” said Jonathan, standing. “I think we need a second opinion.”
“You certainly have the right,” responded the doctor. “But please be prepared to receive the same diagnosis.”
“How can I?” asked Jonathan, his voice unconsciously elevated. “How can I just give up and accept the fact that my wife has an incurable disease? That she’ll never be the person she used to be?” He shook his head. “No, I won’t do it. I can’t do it.”
Susan reached out and took his hand and said, “We’ll figure this out.”
“I understand how hard this can be,” said Dr. Vallenga. “For both of you. Cases of early onset are never easy, and I understand you want to do everything possible. I can tell you right now, the absolute best thing you can do is start her on the medication as soon as possible. Today, even. On the off-chance that we have misdiagnosed her, Aricept won’t harm her.”
Jonathan accepted the prescription.
The doctor continued. “Get the MRI done to rule out a stroke. I’ll meet with you again to review the findings. At that point we’ll make plans for further treatment and I can cover expectations and care. Unfortunately, you have progressed significantly, which is not uncommon in cases of early onset Alzheimer’s.”
Jonathan and Susan visited two other neurologists, had an MRI performed along with dozens of other routine tests but every sign pointed to Alzheimer’s. Each physician also confirmed the futility of hope.
Over the next few weeks Susan continued to lose things and forget names. She rarely blanked on names of the people she had known the longest, but it was easy to see that before long she wouldn’t recognize anyone.
It was still easy for her to make a box of Kraft macaroni and cheese—they had lived on it for years in college—but when she attempted to bake a simple cheesecake, a hobby she had taken up much more recently, her assistant had to prompt her repeatedly.
Over those months, Susan was tragically cognizant of her decline. She didn’t notice specific lapses, but she was aware of her deterioration and knew there was no way to stop it. She clung to Jonathan and was grateful that he turned his full attention to her for the first time in his life. His partners in various ventures stepped in to take over as Jonathan withdrew his interest in each and hastily retired from the business.
Financially, it was the best thing that ever happened to Jonathan. He liquidated all of his investments at the peak of their value. Within a few months the real estate bubble popped. Hundreds of millions of dollars sat in the bank that would have been lost equity had he not sold. But it meant little. Without Susan none of it mattered.
“Jonathan,” she said one night, clutching his hand. “I’m scared. I’m really scared. I’m losing all the memories I’ve collected, and without those who am I? Someday I’ll lose my husband. In my mind you’ll be no different than someone I’ve never met.”
He embraced her and rubbed her back. “I’m not going anywhere, Susan. I’m going to do everything possible. I’ll always be your husband.”
It was a night of rare lucidity for Susan. Tears soaked the shoulder of his shirt. “Promise me. Promise me that you always will be.”
“I promise. I promise it now and always.”
“When I get sicker, even when I don’t remember who you are, I want you to tell me every day. Even if I’m confused or skeptical, I want you to say it.” Tears now flowed down both faces. “I just have to believe that a part of me will cling to that.”
“Susan, I’ve never regretted anything in my life. I’ve made my choices and I’ve stood by them. But now I wonder if every bit of it was a mistake. All the time away from you. What was it all for? I would have noticed sooner if I had just been here.”
She tightened her embrace, giving him comfort he should be offering her.
“You can’t take it all back, but you can give it all back. I’m done giving and helping, but you still have decades ahead of you. Every time you give something or help someone you’ll honor my memory. And in a way you’ll have me back.”
Susan took Jonathan’s face in her hands. “Stop wasting yourself,” she admonished. “You can do so much more,
be
so much more than you have up to now. I always thought it was selfish to say that to you, but when I look through my scrapbook at the individuals I’ve helped I see a life well-lived. What I want is for you to live for others. Carry on a legacy of giving.”
Jonathan had never been told by anyone that he wasn’t living up to his potential. He had gone from a kid who couldn’t afford the shuttle home from college on weekends, to one of the thousand richest men in the world at the age of forty-two. He felt himself tearing in two, a new Jonathan trying to emerge and accomplish something truly important.
There was no way he could tell her no. “I will, Susan.”
“One more thing,” she said. “Find individuals who really need help. There are enough organizations out there for the masses. You’ll get the most out of it by helping people one at a time.”
Jonathan nodded, ideas already rolling through his mind.
“Thank you, Jonathan.” Still holding him by the cheeks she said, “Thank you for what you’ve done in the last few weeks and what you will do in my memory.”
She was never again as coherent as that night.
At first a full-time assistant made her life manageable, which eventually turned into around-the-clock nursing care. She lost interest in all her hobbies, so she had little desire to leave the house. For a while Jonathan took her out for walks, to the zoo, or for a drive. But before long he noticed that the outings just made her anxious. So he set her up in the house as comfortably as possible, and she seemed content. Within a few months, extended time together caused her anxiety, so Jonathan dedicated himself to his new work.
Since the first time she had been unable to recall his name weeks ago, there had been more visits when she missed it than was able to recall it. It broke his heart every time.
Jonathan stood and looked at Yvonne. “Maybe I’m doing something wrong, but I don’t get what Susan was talking about. I mean, it’s exciting at times, but it’s not like I suddenly feel fulfilled.”
The thought of Lisa Knapp holding the gun came to mind as it did too often, and Jonathan shook his head to clear it.
“You are a lucky woman to have such a devoted husband.”
He walked out of the room, leaving only the whirring machines with their blinking lights as company for the unconscious woman.
Part II
July
Living his whole life in one suburb of Detroit or another, Allen Joiner knew cities were dangerous after dark. But he had always assumed small towns were different. That the night wasn’t nearly as dark, and the smell of homemade apple pie permeated the atmosphere like a peace serum.
This trip had proven him wrong.
Towns that had barely registered as stopping points on his map turned out to be frightening new places to walk after dark. He had encountered a surprising amount of graffiti in cities like Kearney, Nebraska and Grand Junction, Colorado. In Gary, Indiana a group of teenagers told him he might not make it out of that part of town alive. Luckily, nothing came of the threat.
Whenever the terrain permitted, he traveled fifty feet from the highway. Not only did it keep him safe from pranksters and reckless drivers, it also prevented a dozen or more people every day from pulling over to offer him a ride.
During the second month of the trip, the weather had stopped cooperating. Rain had become more common than sun. It didn’t take long to learn that
waterproof
was not an accurate description for any of his gear.
Snakes, raccoons, stray dogs, skunks and ants had all made his life hell at one time or another. His bug-spray budget was ten times what he’d predicted, and some days even constant application didn’t seem to faze the mosquitoes.
Sixty-four days into the trek, on the warmest day so far, Allen walked through the red rocks of southern Utah. The desert terrain couldn’t be more different than the lush green of Michigan, but provided its own type of beauty.