I’ve always had a passion for writing, reading, and speaking. It’s been a significant part of my identity for as long as I can remember. Throughout my life, I’ve centered my existence around words and ideas, working to uplift the communities I’ve been involved with—be it on college campuses, at nonprofits, or within my local areas.
Now, I find myself in a new community: Alzheimer’s patients. My goal with this writing is to shed light on what often feels like a distant fear or abstract concept for many. By sharing my own experience, I hope to provide insight into how to understand and assist those facing Alzheimer’s.
Reflecting on my life, I feel fortunate to have embraced it fully—through leadership roles, engaging speeches, and impactful essays. Yet here I am, grappling with the harsh reality that this relentless disease might strip me of all that I hold dear. It’s a frightening thought, especially as I worry it could rob me of my very sense of self.
Admittedly, this does sound bleak. Recently, I’ve been reminded of Alfred Lord Tennyson’s poem, “Ulysses,” and the promise it holds that there remains something enduring within us:
“Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are…”
As this shadow gradually obscures my identity and the person I wish to be, I find myself asking: When Alzheimer’s takes even more from me, will there still be a “me” left to be recognized?
Looking back, I think I began to notice signs of memory decline long ago; they were subtle and didn’t impact my ability to lead or communicate with clarity. At that time, my forgetfulness seemed trivial, and even though my mother suffered from Alzheimer’s, I didn’t see it as an immediate health concern. I even turned to over-the-counter memory supplements, hoping for a sharper recall.
Little did I know how things would change.
Recently, however, the signs of memory loss have become alarmingly clear. It started with a creeping dullness, and I found myself facing a troubling new reality. It felt as though a veil had descended over my memories, making it increasingly difficult to hold on to those moments that once defined me. Lately, I’ve been particularly challenged by short-term memory issues. My grasp on recent events has become fragile.
Now I often find myself unable to remember specific details from just a week ago. In those instances, I feel a disconnection from my own life, as if I’m observing a character rather than participating. The heaviness of this disconnection often robs me of sleep and leaves me feeling anxious and dulled.
During a recent family trip to New York City, one of my children mentioned a Christmas visit we made three years earlier. As he shared how joyful that time was, I was taken aback—I had no recollection of it at all.
Instead of a warm memory, I was met with an overwhelming void, devoid of feelings or even the faint trace of memories. Moments like these cast a long shadow over me, leaving behind a profound sadness for the precious things lost. Though I have loved ones around me, many recent moments feel isolating and hollow, stripped of joy.
It seems as if my most cherished memories are being pulled from me, leaving empty pages that grow more numerous each day.
In this increasing solitude, I often find myself crying for the memories that once meant so much. They may still exist within my family, sparking joy for them, but they’re gone for me. I wonder: How can one hold on to an identity without a meaningful past or future to look forward to?
I frequently ponder, “Who am I?” and more often than I’d like, the answer is, “I don’t know.”
The long and short paradox
And yet, there’s another side to this story.
Since starting a new medication regimen, my world has felt less clouded. I’ve found myself deeply engaged once more, able to think, speak, and write as if I were still the same person I was years prior. Interestingly, my long-term memory seems sharper than before.
But one glaring anomaly remains: my short-term memory has nearly vanished.
This contradiction leaves me perplexed: to have clear recollections one moment and then nothing at all in the next.
Alzheimer’s affects millions—around 57 million worldwide—and is notably more prevalent among those over 65, impacting women significantly more, as they tend to live longer. Factors like race also play a role, with Black and African-Americans facing double the risk of dementia compared to their white counterparts.
As many know, there’s a stigma surrounding Alzheimer’s, leading to misconceptions and diminished humanity in how people treat those affected—often avoiding them or excluding them from social and work environments. This stigma can foster feelings of shame, isolation, and reluctance to seek assistance.
From my own experience, I can say that these hurdles can be eased by using respectful language, focusing on the individual rather than just the condition, including them in choices, and recognizing that their abilities and identity persist even as symptoms evolve. I hope my personal journey contributes to alleviating these stigmas.
Thanks to my medication, I’m able to lead a fulfilling life today, enjoying time with friends and family without the immediate weight of an uncertain past or future. I live as if the disease isn’t part of me.
Much to my relief, I can still recall past moments with friends, children, and former colleagues, though these memories can come and go in waves. Strangely, I find I’m more likely to remember events and people from a time long gone.
For instance, I can still recite, in Middle English, lines from Chaucer’s “The Canterbury Tales”—which I haven’t read in ages:
“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.”
Not long ago, while watching “The Odyssey,” I felt compelled to quietly recite the opening lines of Virgil’s “The Aeneid” about Aeneas, mirroring Odysseus’s journey:
“Arma virumque cano, Troiae qui primus ab oris…”
Sometimes, when re-watching movies from my past, I find myself reciting the lines before the characters speak them. It seems common to have these long-buried memories spring to life again.
Recently, I vividly recalled a trip back home to see my mother.
In 2015, I returned to Wichita, Kansas, my birthplace, where many of my siblings and childhood friends still reside. My mother was in what we called the spare room of the house she shared with my father. By then, Alzheimer’s had taken its toll, leaving her unable to express herself.
There’s a Vietnamese saying: “When drinking clear water, remember who dug the well. When eating fruit, remember who planted the seed.” My mother embodies this legacy—she nurtured the foundation for her children and grandchildren, fostering who we are today. This seed thrives, passed down through generations.
She didn’t just preach humility and gratitude—she lived by them. She encouraged us to embrace kindness and to always try our best, teaching us the importance of empathy and understanding others fully before judging them.
When I walked into her room, propped up with pillows, she turned toward me silently. I anticipated her silence. But then she spoke, clearly declaring, “You are a good man.” In that moment, I knew she recognized me.
My mother passed away shortly after my visit, and I’m eternally thankful for that precious moment. Her acknowledgment felt like a gift—reminding me that I still exist in a way that matters, tied to my heart more than just my fading memories. If I’ve been able to be kind, Alzheimer’s can’t take that away.
Additionally, I’ve seen colleagues coping with Alzheimer’s who still find joy. One brilliant autumn afternoon, with the sky painted blue and the promise of warmth in the air, I felt a wave of gratitude for the charmed life I’ve lived.
My mother instilled in my family the importance of gratitude and so much more. She showed us to correct wrongs and soothe pain, emphasizing the importance of love and kindness. In her eyes, even the most difficult people were deserving of understanding.
Her goodness was genuine, a part of her being rather than a facade she put on or took off. In her honor, I revisit Tennyson’s life-affirming lines from “Ulysses”:
“… Come, my friends,
‘T is not too late to seek a newer world …
To strive, to seek, to find, and not to yield.”
Ultimately, I have much to be thankful for. My mother’s teachings have shaped my life and work, and I am sincerely grateful to carry them with me, defining who I am today.
