I have always loved writing, reading and speaking. It defines who I am from a young age. I’ve built my life around words and ideas, and I’ve always tried to use them to improve the places I’ve been fortunate to help lead: college campuses, nonprofits, the communities I belong to.
Now I’m writing this because I’ve found myself a member of a new community: Alzheimer’s patients. I hope, through these words, to offer a window into what is a fear and abstraction for many. In describing my own experience, I also hope that you can better understand and help those around you who are affected by Alzheimer’s disease.
When I look back on my journey, I am fortunate to be able to say that I have loved my life: the leadership roles, the speeches, the essays, the opportunity to truly make a difference. And now I accept – and not easily – the fact that this merciless disease could take everything away from me. In doing so, I live in fear that it could take my very identity with it.
It sounds dire, I know. Lately I have often thought of Alfred Lord Tennyson’s blank verse poem, “Ulysses,” and the promise it makes that there is something in the heart of each of us that endures:
“Even if much is taken, much remains; and even if
We are no longer the force that once
Earth and sky displaced, what we are, we are…”
As an opaque sadness sets in, beginning to devastate who I am and who I always hoped to be, I ask myself a question: When Alzheimer’s disease takes hold, will I still be the person I tried to be?
Looking back on my memory decline, I believe I experienced it, however slight, many years ago. At the time, the things I had forgotten were minor and did not affect my ability to think, write, speak, or lead with clarity and purpose. It didn’t seem like a significant health problem, nor predict one, even though my mother died of Alzheimer’s disease at age 87. And so, for a while, I began taking over-the-counter supplements that promised a safer sense of memory.
I didn’t know it.
More recently, my memory loss has become unmistakable. It started with a descending opacity, a new and unsettling experience for me. It was as if a shadow had fallen over my memories, making it harder to retain moments and experiences that were once clear, certain, and an integral part of who I am. In recent weeks, these challenges have become more pronounced, particularly when it comes to my short-term memory. My connection with my immediate past is often tenuous.
Now I sometimes have trouble remembering 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 I once knew quite well. This detachment robs me of sleep, peace of mind and dulls pleasure. It’s dark and it can be unforgiving.
On a recent trip to New York, one of my children reminded me of a visit our family made there for Christmas three years ago. When he recounted the vacation, how much fun we had, how it was a joyful chapter in our family’s history, I was surprised. I have no memory of it.
Where there should be a warm mental image, it is instead a stark and empty space. I have no attachment to it – no emotion, not even remnants of memories. At times like these, I am overcome by a deep sadness at the loss of something precious. All of this has now gone to an unknown place, beyond my reach. I’m lucky to have people I love around me, but much of my recent life has become lonely, too often without even a patina of happiness.
My most precious memories are stolen from me and I am left with a series of blank pages that seem to grow longer by the day.
So, in my deepening confinement, I cry tears of loneliness brought by the loss of memories that were once dear to me. I take comfort in the fact that they endure in those close to me, sparking feelings of joy, but they no longer do that for me. And I keep asking: how can we have an identity without a resonant past or a hoped-for future?
I ask myself: “Who am I? » and the answer, more and more frequent, is: “I don’t know”.
The paradox of long and short
And yet.
As I began taking more prescribed medications, my world seemed less opaque. I could feel deeply engaged again. I think, speak and write as if I were the same person I was several years ago. Sometimes my long-term memory seems to be stronger than before.
But there is one significant exception: Over the past few weeks, my short-term memory has all but abandoned me.
The paradox is staggering: remembering so well, then not remembering at all.
Dementia affects approximately 57 million people worldwide, and Alzheimer’s disease is the most common form. One in 10 people over 65 years old has it, and almost one in three people over 85 years old. Today, in the United States, approximately two-thirds of people living with Alzheimer’s disease are women, mainly because women tend to live longer than men. Black and African-American people are about twice as likely to develop dementia as white adults.
As we know, Alzheimer’s disease is stigmatized, which leads to negative stereotypes, misunderstandings and dehumanizing behaviors, such as avoiding a person with Alzheimer’s disease, excluding people from social, professional 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 shows that all of this can be reduced by using respectful language, focusing on the person rather than the illness, including them in conversations and decisions, and recognizing that abilities and identity remain even as symptoms progress. I hope that my very personal story will help correct some of this stigma.
With medication, I can continue to live and work comfortably, even robustly, in the present, without the immediacy of a past or future. I spend time with friends, family, and other people, and I am able to engage at a high level. I live as if I had no illness.
Fortunately, I remember some of my past engagements with my friends, my children, and some of the people I have worked with over the years. These memories come and then disappear. I often find that I remember people, places and events from the distant past more easily.
For example, today I am still able to recite, in Middle English, many lines from Chaucer’s “Canterbury Tales”, which I have not read in several decades:
“When this Aprille with his sooty shoures / The droghte of March has broken through to the root… Thanne longs for people to go on pilgrimages… The holy and happy martir for seke.”
More recently, when watching the film “The Odyssey,” I was strangely inspired to softly recite the opening Latin lines of Virgil’s epic poem, “The Aeneid” – about the Trojan hero Aeneas who wanders after the fall of Troy, much like Odysseus:
“Arma virumque cano, Troiae qui primus ab oris…”
“Of weapons and of the man of whom I sing, who is the first from the shores of Troy…”
Sometimes when I rewatch films I saw decades ago, I can recite the actors’ memorable lines before they are spoken. I am told that revived memories of past events that I have not thought about for many years are not uncommon.
Recently, I remember in 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 lived in what we called the guest room in the house where she and my father lived. By then, she had developed advanced Alzheimer’s disease. It had taken root, taken over her life and stolen her voice.
There is a Vietnamese proverb that says: “When you drink clear water, remember who dug the well. When you eat fruit, remember who planted the seed.” This is my mother’s legacy: she dug the well and planted the seeds for her children and grandchildren to become the people we are today. It will last forever because it will be passed down from generation to generation.
She taught us, through her words and through her own actions, not to boast, 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 being too quick to judge, because you can never truly know another person without having walked in their shoes for a while.
When I walked into the room to see my mother, her head was propped up on big soft pillows, leaning against the headboard. She turned her head towards me and looked at me in silence. She didn’t say anything when I sat down next to her, and I didn’t expect her to. But then she spoke. In a clear, crystal voice, she said, “You are a good man. » I knew in an instant, in my head and in my heart, that she knew me.
My mother died shortly after my visit. Every day I am grateful for this time with her. His recognition was a precious gift then, and it still is today.
If she could see me, then there would still be a recognizable me – a me linked to my heart, not my head. And if I managed to be a good person, that’s something that even Alzheimer’s disease can’t take away from me.
And here it is: some of my colleagues in our Alzheimer’s club have lived and continue to live in joy and happiness. And on a recent, bright autumn afternoon, the air is soft and radiant, the sky azure 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 grateful.
My mother taught me and my family gratitude and so much more. She taught us where you see something wrong, correct it; where you see a wound, soothe it; where you see a broken heart, mend it.
She taught us to look for the best, not the worst, in people. She didn’t understand meanness and she didn’t understand mean people. His goodness was genuine. He…
Gn Health
