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My Own Foray Into the World of Dementia

A Personal Perspective: The psyche disconnected from the hard drive.

An estimated 6.5 million Americans aged 65 and older were living with Alzheimer's disease in 2022, and according to the Alzheimer's Association, that number is rapidly growing and is expected to continue to do so. We hear a lot about the disease anymore. And many of us know family members or friends who are going through it. But, what is it like to suffer from it, to have all that makes us, us, slowly stripped away? What is it like to no longer remember our surroundings, the day, the week, the year; or, our own children?

All any of us can do, really, is speculate. Right? Because no traveler comes back from this “undiscovered country.” And what a terrifying place it is, because it forces us to confront the concept that who we are, who we really are, deep inside, is determined solely by our neurobiology, our neurophysiology. Scratch the surface and many of us become closet dualists, don’t we? We want to believe that our thoughts, our emotions, and our affections, could be, just might be, something beyond our internal wiring. Then Alzheimer's rears its ugly head and tells us, “No!” Tells us, we are nothing special beyond our axons, dendrites, and synapses. Throw in enough plaques and tangles, and we lose it all. Slowly and methodically, we are relieved of, well, us. Our beings.

As a clinical neuroscientist, I know that Alzheimer's is never cured. Recent developments in anti-beta amyloid medications show real promise in potentially slowing the disease down, but we are far from curing it. Thus, no one has ever tied a rope around their waist, waded into the abyss, and then been pulled back to the world of the coherent so that they might share the experience with the rest of us. But, some of us may have been given a glimpse, an insight, into what it might be like. And, I believe I might be one.

The diagnosis was ADEM, acute disseminated encephalomyelitis. Out of the blue, my immune system went haywire and started to attack the insulation of the nerves of my brain. And, without the insulation, said nerves couldn’t do their thing, couldn’t connect, couldn’t speak to one another. Over the space of a couple of weeks, I went from being a brain surgeon to a near “vegetable.” Unable to read, walk, talk, and care for me. It went on for months. Then, thankfully, submerged deep in that abyss, tether tenuously tied around my waist, I managed to clamber back. Back to the world of the thinking, the communicating, the doing.

Let me concede that it may not have been an entirely comparable experience. It’s certainly not the same disease. But at its core laid the same sickening loss of defining elements of who I was, what I was. And I would be lying if I were to report that my memories are clear and vivid. They are not. More like a fuzzy old black-and-white movie. But I remember the fear. The deep, boring, relentless fear. Not of death, but of what would become of my loved ones. And the shock. Shock that it was happening to me. Me! I was a caregiver, not a receiver. Then, there was the sorrow. Sorrow at leaving all that was so wonderful in life behind—for I was certain that I was leaving. And this brought longing; longing to be once again playing with my boys, holding my wife, feeling the warmth of the sun on my neck, enjoying the birdsong out my window, laughing and carrying on with my friends.

I remember all this churning away, deep inside. For what felt like an eternity. Not that it was apparent on the outside. On the outside, I guess I was simply a wreck. My wife, Cindy, told me that I resembled, very much, my mother, in the later stages of her Alzheimer's. Blank. Emotionless. Incomprehensible. A deer caught in the neurological headlights. Yet, throughout it all, I never felt erased. Absent. Void of being. I felt like it was still me, somewhere there, beneath it all. Beneath the deep shroud that was smothering me, snuffing out my “brief candle.” Was it a unique consciousness, separate from the mainframe, doing this thinking? A psyche, disconnected from the hard drive? Disconnected from all the corrupted programs and fraying wires? I don’t know. I’ll leave that one up to the philosophers.

But it brings me back to those who are currently in the throes of Alzheimer's. I cannot tell you what’s going on inside. I don’t know whether they too are experiencing the fear and the sense of loss and the longing. Whether they too inhabit another plain of experience, disconnected from their own circuitry; thinking, and feeling, but unable to reach out and make us understand. Whether they sense their being, their soul, as an entity separate from their flesh and blood. I do know, though, that it’s not a pleasant process, to systematically be stripped of one’s personhood, one’s humanity, one’s dignity. And I have to believe that it must be only more agonizing when it’s occurring, unlike in my own experience, in slow motion.

On this Brain Awareness Month and all months let’s embrace those who are going through it. Recognize them for who they were, not the disassembling body they now inhabit. Take a chance that they—the real them—are still in there somewhere, despite all the short-circuiting and spinning cursors. Speak to them as the person they were. Laugh and reminisce. Hold their hands as they plunge deeper and deeper into the void. Let them fill with love and gratitude rather than loss and regret. And let’s support their loved ones who put so much into their care, only to be rewarded by their unremitting decline. And, finally, let’s get behind the efforts to better understand, combat, and conquer the disease. Believe me, real progress is on the horizon.

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