In the middle of the journey of our life I came to myself within a dark wood where the straight way was lost.
—Dante Alighieri, The Divine Comedy
Fate likes to deal us unexpected cards. In a split moment, one’s life can take drastic turns. Sometimes, it is not for the better, and often, we are not prepared. Yet, people must choose to play the cards the best they know how.
It was an ordinary day in October 2002. As my plane was descending into Boston’s Logan Airport, I took in the view from my window: fall had already painted one of those spectacular landscapes so characteristic of New England—ﬁery red, simmering crimson, glittering gold, and various shades of yellow spread across the ﬁelds. When I had left Dallas a few hours earlier, summer still had its distinctive presence.
Dragging my ultralight carry-on through the chaos of Logan’s crowded hallways, I walked briskly to catch a taxi before a line formed. The vigorous walking made me hot. Occasionally, a breeze came in through the automatic doors with a suggestion of the cool, crisp day outside, where I could see the Boston sun shining happily over a tapestry of color. Carefully avoiding collisions with other travelers in their comings and goings, I was vaguely conscious of the loudspeakers’ monophonic tone warning travelers to be vigilant of unattended luggage and suspicious behavior, somehow managing to diminish people’s awareness with each repetition.
My cell phone rang. I immediately recognized that the call was from the Miami area, but the number was new to me. Without slowing down, I responded with the usual matter-of-fact tone I used for calls of unknown origin, “This is JoAnn.”
At the other end was an unfamiliar male voice with a heavy foreign accent. Russian, Polish, or was it Romanian?
“I am Dr. Rabinowitz, an ophthalmology neurologist at the University of Miami medical center. Do you have a moment? I need to talk to a family member about Dr. Wingﬁeld’s diagnosis. He said I should talk to you, no one else.”
My heart dropped. Suddenly, I broke into a cold sweat and felt weak.
“Yes,” I replied, holding my breath as if the man at the other end of the line might evaporate into thin air if I breathed too hard. All the chaos and noise around me had receded, as though I were all alone in a vast, empty hall. I managed to sit down on a nearby bench and continued, “I have been expecting your call.”
The day before, in Dallas, Clyde had called me from Miami, where he had been undergoing psychological and cognitive assessments. “My psychological evaluation is complete. The doctor said that I have dementia.”
“Dementia? What is dementia?” A quick search of the English dictionary in my brain did not yield any meaning. Another new English word for me? It sounded quite innocent, like “diﬀerentia,” small deviations, nothing to cause alarm.
“Dementia is a kind of memory loss. I guess I’ve just gotten lazy since I retired.” Clyde didn’t seem to be alarmed either.
“Did the doctor say what the cause was? What should you do? What should I do? What should we do?” I was always eager to attack a problem.
“The doctor said it could be Alzheimer’s disease. I told him do not label me with anything. I don’t want to be put into a box!”
So typical of men! So typical of Clyde! Self-assured, he would never in a million years let anyone tell him who he was, what to do, or what problem he had, not even his doctor. Instead, most unambiguously, he told the doctor exactly what to say.
Born in the early 1930s in a small Southern town, Clyde was a Depression-era baby. When he was about four years old, he contracted pneumonia and nearly died. He remembered lying in bed, unable to move or talk, listening to the doctor telling his mother that he would be dead before sunrise and hearing his aunt asking his father to remove his baby shoes from the bedside because, when he was dead, his mother would never remove them. Miraculously, he beat the doctor’s prediction and survived. At the tender age of twenty-two, after graduating from university and ﬁnishing his ROTC training, Clyde became an Air Force oﬃcer. It was then the end of the Korean War. He ﬂew airplanes and presented intelligence brieﬁngs to generals. After the war, on GI Bill funding, he completed a master’s degree in ﬁnance and a PhD in public administration, then went on to serve in senior positions in higher education, including several university presidencies.
He was well read and well traveled, quick to give and reluctant to receive, easy to amuse but diﬃcult to fool; he could be frugal but was never stingy, and thrifty but never cheap. He feared nothing and stopped at no obstacles. He used to quote to me in his magniﬁcent baritone voice from the King James Bible with an Air Force twist and an exaggerated seriousness, “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for I am the meanest SOB of all!”
Nothing called “dementia” could possibly defeat a man like Clyde.
But Alzheimer’s is an entirely diﬀerent beast. Didn’t President Reagan have that?
When I heard the term Alzheimer’s disease, the word dementia lost its ring of innocence. Still, I held on to the “Wingﬁeld Conﬁdence”—Wingﬁeld may be wrong, but never in doubt. Surely there could be a mistake. Surely there would be something we could do. Hadn’t Clyde always provided more solutions to every problem we had ever encountered?
Clyde’s voice pulled me back from my thoughts. “Dr. Rabinowitz said he needed to talk to family members about the diagnosis. I told him the only one he has my permission to talk to is you. He will call you soon.”
We agreed that the doctor’s name would be Rabbit, because it was too hard for me to pronounce, much less to remember how to spell, such a complicated name.
“OK. I can hardly wait for you to be back.” I ended that conversation.
I spent the rest of the day trying to convince myself there was nothing to be worried about. Hadn’t Clyde said there was nothing to be worried about? Wasn’t he almost always right? Yet an uneasy feeling lingered. That word, Alzheimer’s . . .
“Are you aware of the psychological and cognitive evaluations we were working on with Dr. Wingﬁeld last week?” On the other end of the line continued Rabbit’s Eastern European–infused voice.
“I have completed the analysis. Dr. Wingﬁeld has dementia.”
“Clyde told me that. He said that dementia is a form of memory loss. It is quite common as people age. What can you tell me about his dementia?”
“Well, dementia is a general term for memory loss. There are many forms of dementia. My diagnosis of Dr. Wingﬁeld is that he has Alzheimer’s disease, a speciﬁc form of dementia. It is a progressive and degenerative cognitive disease that is not reversible.”
All of a sudden, the air at the airport felt thinner, and I thought I couldn’t breathe. Did he say what I thought he said? Did he mean what he said? Did I hear what he said? Did I understand correctly what was said? After all, my English comprehension had failed me many times before. Small misunderstandings sometimes caused big misunderstandings, like pleasure and pressure, ego and eagle, vacation and vocation, or message and massage. One time I emailed a male colleague telling him that I would give him a massage, whereas I really meant message. It puzzled me why he looked so awkward when I saw him later.
But Rabbit was clear. So clear that the words Alzheimer’s disease, though coming remotely from over a thousand miles away, were brutally distinct, striking me like the blows of a heavyweight boxer and making me dizzy.
“Dr. Wingﬁeld has made it very clear to me that I should not label him. I will respect his wishes by not calling him an Alzheimer’s patient, but I must talk to a family member about his disease. He said the only one I should talk to is you.”
“Yes. He told me that.”
“Dr. Wingﬁeld said that he is retired and is now a consultant to the University of Miami Board of Trustees. Is that true?”
“Dr. Wingﬁeld cannot make decisions. As his physician, I must tell you that it is inconceivable to me that he still works.” Dr. Rabbit sounded appalled that a consultant to the board of his university was mentally impaired. “His cognitive ability is severely compromised. He does not have the faculties to make sound judgments.”
How ironic! Didn’t Clyde used to repeat the old joke, “Old university presidents never die. They just lose their faculties”?
“He said that he still travels by himself. Is this true?”
“Yes. We sometimes travel together, but he frequently travels to Miami by himself for his work with the board. I can’t always be with him on these trips, since I work at Southern Methodist University, in Dallas.” I felt a need to explain, as if I were guilty of not always being at his side. “The rest of the time, he stays in Dallas with me.”
“Dr. Wingﬁeld cannot travel alone. His memory is impaired. He will get confused and he will get lost. It is not safe for him to travel alone. He must be with someone when he travels. His condition will deteriorate. He will eventually lose not only all his ability to remember, comprehend, and recognize but also his ability to take care of himself. You will need to safe-proof your home as everything can be hazardous to him, and as his condition worsens, he cannot be left alone without help.”
At the other end of the line, Rabbit’s voice continued to tell me candidly, though not inconsiderably, about the dismal prospects of Alzheimer’s disease. Meanwhile, my mind took oﬀ on its own path. For a couple of years, I had suspected that something was not right with Clyde’s mind. Certain things had started to go peculiarly wrong: occasionally, he would leave drawers open, leave the water running, fail to turn oﬀ lights, and even sometimes forget to ﬂush toilets. And he began to have traﬃc accidents. This sloppiness was most deﬁnitely un-Clyde, who had always been clean, neat, and an excellent driver. I thought that his good behavior was due to his Air Force training and from having worked and lived in Manhattan and other big cities where driving skill was more essential to one’s survival, but he attributed his remarkable self-discipline to having had a good mother. To try to make sense of his seemingly careless behaviors, I had even joked with him that he might have Alzheimer’s disease.
To try to resolve my lingering suspicion over “Does he have it or does he not have it?”, I had started to educate myself about Alzheimer’s disease. While I had not been able to diagnose him myself, I had some general understanding of what was in store for a person with Alzheimer’s and for me, his well spouse.
I knew Clyde would gradually descend into a black hole, where there would be no friends left, and there would be no family left; everything would become unrecognizable, then everything would become incomprehensible. The past would disappear, and the future would never come. Eventually, there would be nothing left in his consciousness, neither him nor me. Yet our lives would continue. For years? For decades?
On the other end of the phone, Dr. Rabbit ended the conversation with these sympathetic words: “I am very sorry. Your life will be very diﬃcult as his disease progresses. Take care, and good luck to you.”
Trickles of warm, salty liquid in my mouth made me realize that I was weeping, in public. Pain of losing a loved one is a pain so intense that no painkiller, regardless how powerful, can ease. I had just been given a death sentence for Clyde, the man who for the past thirteen years had been my mentor, my anchor, my partner, my best friend, and my protector. I was facing the most profound loss of my life. In the vast, crowded hallways of Logan Airport, I felt terribly alone as I sensed that Clyde’s strong support, the support that had sustained me like indestructible pillars, was crumbling. Sadness crushed on me like a tumbled mountain, and the ground underneath me ﬁssured. At the same time, from the deepest core of my being, a somber determination slowly emerged: Clyde, you have made me a stronger woman. I can and will take this journey with you to wherever the end might be.
“The will to win, the desire to succeed” were the words of the ancient Chinese philosopher Confucius, the wisdom of my ancestors.
With these words of encouragement by my ancestors echoing in my mind, I walked out of the airport, Dr. Rabbit’s parting words still resonating:
“. . . good luck to you.”