I have always loved writing, reading, and speaking. It’s defined who I am from a very early age. I have built my life around words and ideas, and I have always tried to use them to improve the places that I’ve been fortunate enough to help lead — college campuses, nonprofits, the communities to which I belong.Now I’m writing this because I’ve found myself a member of a new community: Alzheimer’s patients. I’m hoping, through these words, to offer a window into what is a fear and abstraction for many. In describing my own experience, I’m also hoping you may be better able to understand and help those around you with Alzheimer’s.When I look back on my journey, I’m lucky to be able to say that I’ve loved my life — the leadership roles, the speeches, the essays, the opportunity to truly make a difference. And now I’m coming to terms — and not easily — with the fact that this unforgiving disease might take it all away from me. In doing so, I live in fear that it might take my very identity with it.This sounds dire, I know. So lately, I have been thinking often of Alfred Lord Tennyson’s blank verse poem, “Ulysses,” and the promise it makes that there is something at the core of all of us that endures:“Tho’ much is taken, much abides; and tho’We are not now that strength which in old daysMoved earth and heaven, that which we are, we are…”As an opaque gloom creeps in, beginning to lay waste to who I am and who I hoped I would always be, I’ve been asking myself a question: When Alzheimer’s takes even more, will I still be the person I have tried to be?Looking back on my memory decline, I believe I experienced it, slight as it may have been, beginning many years ago. At the time, the things I forgot were minor and did not affect my ability to think, write, speak, or lead with clarity and purpose. It didn’t seem to be a significant health issue, or foretell one, even though my mother died of Alzheimer’s at age 87. And so, for a while, I began taking over-the-counter supplements that promised a surer sense of memory.Little did I know.More recently, my memory loss has become unmistakable. It began with a descending opaqueness, an unsettlingly new experience for me. It was as if a shadow had fallen across my memories, making it harder to hold onto moments and experiences that were once clear, certain, and an important part of who I am. In recent weeks, these challenges have become more pronounced, particularly with my short-term memory. My connection to my immediate past is often tenuous.Now I sometimes struggle to recall what happened on a specific day last month or, say, a week ago. In these moments I feel disconnected from my life — and from Lee Pelton, a person whom I once knew quite well. That detachment denies me sleep, peace of mind, and dulls pleasure. It is dark and it can be merciless.On a recent trip to New York City, one of my children reminded me of a visit our family took there for Christmas three years ago. When he recounted the holiday, how much fun we had, how joyous a chapter it was in the story of our family, I was taken by surprise. I have no memory of it.Where a warm mental image should be is, instead, a stark and empty space. I have no attachment to it — no emotions, not even the residue of memories. In moments like these, I am overcome with a deep sadness over the loss of something precious. It is all gone now to some unknown place out of my reach. I am fortunate to have people I love around me, but much of my recent life has become solitary, too often without even a patina of happiness.My most precious memories are being stolen from me, and I am left with a series of blank pages that seems to grow longer by the day.And so, in my increasing confinement, I weep tears of loneliness borne by the loss of memories that were once dear to me. I take comfort that they live on in my loved ones, kindling feelings of joy, but they no longer do that for me. And I ask, time and again, how do you have an identity without a resonant past or a hoped-for future?I ask myself, “Who am I?” and the reply, with increasing frequency, is, “I don’t know.”The long and short paradoxAnd yet.As I began taking several prescribed drugs, my world seemed less opaque. I could again feel deeply engaged. I cogitate, speak, and write as if I were the same person I was several years ago. At times, my long-term memory seems to be stronger now than it was before.But there is one significant exception: In the past several weeks, my short-term memory has all but abandoned me.The paradox is bewildering: to remember so well, and then not remember at all.Dementia affects approximately 57 million people worldwide, and Alzheimer’s disease is the most common form. One in 10 people older than 65 have it, and nearly 1 in 3 people older than 85. Today, in the United States, about two-thirds of people living with Alzheimer’s are women, principally because women tend to live longer than men. Black and African-Americans are about twice at risk of developing dementia than white adults.As we know, Alzheimer’s is stigmatized, which leads to negative stereotypes, misunderstandings, and dehumanizing behaviors, such as avoiding someone with Alzheimer’s, excluding people from social, work, and community activities. We also know that the stigma that accompanies Alzheimer’s disease often causes shame, isolation, depression, and a reluctance to seek help.My own experience says that all of this can be reduced by using respectful language, focusing on the person rather than the disease, including them in conversations and decisions, and recognizing that abilities and identity remain even as symptoms progress. It is my hope that my very personal story will help correct some of this stigmatization.Because of the medication, I can continue to live and work comfortably, even robustly, in the present without the immediacy of a past or a future. I spend time with friends, family, and others, and I am able to engage at what feels like a high level. I live as if I had no disease.Happily, I recall some of my past engagements with my friends, children, and some of the people that I once worked with over the years. These memories come and then disappear. It often seems like I am more likely to remember people, places, events in the distant past.For instance, today I am still able to recite, in Middle English, many verses of Chaucer’s “The Canterbury Tales,” which I have not read in several decades: “Whan that Aprille with his shoures soote / The droghte of March hath perced to the roote …Thanne longen folk to goon on pilgrimages … The hooly blisful martir for to seke.” More recently, when I was watching the film, “The Odyssey,” I was strangely inspired to quietly recite the opening Latin lines of Virgil’s epic poem, “The Aeneid” — about the Trojan hero Aeneas who wanders after Troy’s fall, much like Odysseus:“Arma virumque cano, Troiae qui primus ab oris…”“Of arms and the man I sing, who first from the shores of Troy…”Sometimes when I am re-watching films I had seen even decades ago, I can recite the actors’ memorable lines before they are spoken. I am told that the rekindled memories of past events that I haven’t thought of in many years are not uncommon.Recently, I’ve been recalling in great detail a trip I took home to see my mother.In 2015, I traveled to Wichita, Kansas, where I was born and where my siblings and many childhood friends still live. My mother was staying in what we called the spare room in the house where she and my father lived. By then, she had developed advanced Alzheimer’s disease. It had taken root, seized her life, and stolen her speaking voice.There is a Vietnamese proverb that says: “When drinking clear water, remember who dug the well. When eating fruit, remember who planted the seed.” This is my mother’s legacy: She dug the well and planted the seed for her children and grandchildren to become the people we are today. It will last forever as it is passed on from one generation to the next.She taught us in word and her own actions to be not boastful, but to live life with humility and with an attitude of gratitude. She taught us to do our best. She taught us to love others. She taught us sympathy, to keep an open mind and heart and to resist judging too quickly because you could never really know another person until you had walked around in their shoes for a while.When I walked into the room to see my mother, her head was propped up on big, fluffy pillows, leaned against the headboard. She turned her head to me, watching me, in silence. She didn’t say anything when I sat beside her, and I didn’t expect her to. But then she spoke. In a clear, crystalline voice, she said, “You are a good man.” I knew in an instant, in my head and my heart, that she knew me.My mother died shortly after my visit. Every day I am grateful for that moment with her. Her recognition was a precious gift then, and it is a precious gift now.If she could see me, then there was still a recognizable me — a me tied to my heart, not my head. And if I have managed to be a good person, that is something that not even Alzheimer’s can take from me.And there is this: A few of my colleagues in our Alzheimer’s club have and continue to live with joy and happiness. And on a recent and brilliant autumnal afternoon, the air is sweet and radiant, the sky an azure blue and the sun, warm with the promise of hope.In these moments, I realize that I have lived a charmed life, for which I am truly thankful.My mother taught me and my family gratitude, and so much more. She taught us where you see a wrong, right it; where you see a hurt, soothe it; where you see a broken heart, mend it.She taught us to seek out the best, not the worst, in people. She didn’t understand meanness and she didn’t understand mean people. Her goodness was authentic. It was not something that she put on in the morning and took off at night, like clothes. It was who she was. Pure and simple.In honor of her, and her radical belief to never give up, I return to the life-affirming lines Tennyson gives us in “Ulysses”:“… Come, my friends,’T is not too late to seek a newer world …To strive, to seek, to find, and not to yield.”It is enough, after all. My mother’s lessons of living have guided my life and my work. I’m grateful, sincerely grateful, to remember them, and be defined by them now.
