I have always loved writing, reading, and speaking. It\u2019s 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\u2019ve been fortunate enough to help lead \u2014 college campuses, nonprofits, the communities to which I belong.<\/p>\n
Now I\u2019m writing this because I\u2019ve found myself a member of a new community: Alzheimer\u2019s patients. I\u2019m hoping, through these words, to offer a window into what is a fear and abstraction for many. In describing my own experience, I\u2019m also hoping you may be better able to understand and help those around you with Alzheimer\u2019s.<\/p>\n
When I look back on my journey, I\u2019m lucky to be able to say that I\u2019ve loved my life \u2014 the leadership roles, the speeches, the essays, the opportunity to truly make a difference. And now I\u2019m coming to terms \u2014 and not easily \u2014 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.<\/p>\n
This sounds dire, I know. So lately, I have been thinking often of Alfred Lord Tennyson\u2019s blank verse poem, \u201cUlysses<\/a>,\u201d and the promise it makes that there is something at the core of all of us that endures:<\/p>\n \u201cTho\u2019 much is taken, much abides; and tho\u2019<\/p>\n We are not now that strength which in old days<\/p>\n Moved earth and heaven, that which we are, we are\u2026\u201d<\/p>\n As an opaque gloom creeps in, beginning to lay waste to who I am and who I hoped I would always be, I\u2019ve been asking myself a question: When Alzheimer\u2019s takes even more, will I still be the person I have tried to be?<\/p>\n 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\u2019t seem to be a significant health issue, or foretell one, even though my mother died of Alzheimer\u2019s at age 87. And so, for a while, I began taking over-the-counter supplements that promised a surer sense of memory.<\/p>\n Little did I know.<\/p>\n 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.<\/p>\n 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 \u2014 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.<\/p>\n 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.<\/p>\n Where a warm mental image should be is, instead, a stark and empty space. I have no attachment to it \u2014 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.<\/p>\n 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.<\/p>\n 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?<\/p>\n I ask myself, \u201cWho am I?\u201d and the reply, with increasing frequency, is, \u201cI don\u2019t know.\u201d<\/p>\n The long and short paradox<\/p>\n And yet.<\/p>\n 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.<\/p>\n But there is one significant exception: In the past several weeks, my short-term memory has all but abandoned me.<\/p>\n The paradox is bewildering: to remember so well, and then not remember at all.<\/p>\n Dementia affects approximately 57 million people worldwide<\/a>, and Alzheimer\u2019s 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\u2019s 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.<\/p>\n As we know, Alzheimer\u2019s is stigmatized, which leads to negative stereotypes, misunderstandings, and dehumanizing behaviors, such as avoiding someone with Alzheimer\u2019s, excluding people from social, work, and community activities. We also know that the stigma that accompanies Alzheimer\u2019s disease often causes shame, isolation, depression, and a reluctance to seek help.<\/p>\n 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.<\/p>\n 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.<\/p>\n 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.<\/p>\n For instance, today I am still able to recite, in Middle English, many verses of Chaucer\u2019s \u201cThe Canterbury Tales<\/a>,\u201d which I have not read in several decades: <\/p>\n \u201cWhan that Aprille with his shoures soote \/ The droghte of March hath perced to the roote \u2026Thanne longen folk to goon on pilgrimages \u2026 The hooly blisful martir for to seke.\u201d <\/p>\n