Why I Wrote a Novel about Alzheimer’s

Author Nicholas Conley, shares with Alzheimers.net why he wrote a novel about Alzheimer’s and shares how the disease has impacted his life.Why I Wrote a Novel about Alzheimer's

Why I Wrote a Novel about Alzheimer’s

Writing was my first passion in life. From a young age, I had a deep love of storytelling. Character arcs moved me, twist endings made me jump, expert plotting charged my brain like a jolt of electricity.

Growing up, I also developed a passion for helping people, offering whatever assistance I could to relieve their suffering. This is what compelled me to enter the healthcare field, and to jump onto the ground floor of a nursing home, where I met hundreds of amazing people who suffered from Alzheimer’s and related dementias — many of them who, due to the progression of the disease, slowly lost the ability to speak for themselves, and thus required care, empathy and understanding on a level beyond anything I had ever experienced before.

To truly care for someone with Alzheimer’s disease, one must first understand them as a human being, and give them the freedom to be who they are without fear of judgment. Through experience, I learned to be there for the residents of the nursing home, to talk to them about their life stories even when the stories got mixed up, to hold the hands of people who were dying, and take care of them until the end. Working in a nursing home, Alzheimer’s is something I became familiar with. Understanding the quirks, the common trends, the progression… to a caregiver, all of this becomes second nature. When someone reaches those later stages, having a good caregiver is more important than I can possibly express.

As I continued working with people with Alzheimer’s, and as my writing career charged forward, I felt a fierce desire to speak out about the disease. Unless one either has Alzheimer’s, or has a family member with the disease, it seems to exist in a hidden world that most people don’t spend too much time thinking about. I wanted to take that hidden world and bring it into the light, hopefully doing my part to raise more awareness about a disease that doesn’t get even half the attention it deserves. I wanted to show people what it means to have Alzheimer’s in today’s world.

Pale Highway: A Novel about Alzheimer’s

So, I got to work.  I knew right from the beginning that if I wanted to write about Alzheimer’s, I needed to tell my story from the perspective of a protagonist with the disease.

My novel, “Pale Highway,” is the story of Gabriel Schist, a Nobel Prize winning immunologist who, after an Alzheimer’s diagnosis, has been spending his remaining years at “Bright New Day,” a nursing home. But Gabriel is stirred into action when one of his fellow residents comes down with a terrifying new superbug. As the infection spreads, he must race to find a cure — if his cognitive disease doesn’t catch up to him first.

Gabriel is a brilliant man struck down by a disease that takes away the one thing that the world values the most about him, that being his unique ability to solve complex problems. His Alzheimer’s diagnosis demonstrates the painful truth about the disease: that anyone is susceptible, no matter how brilliant, how important, or how virtuous.

As a man diagnosed with Alzheimer’s, Gabriel must continually struggle against society’s desire to repaint him an irrelevant, demented old man, a struggle that many real people endure every day. Writing the world through Gabriel’s eyes gave me the freedom to show that a person with Alzheimer’s is just as human as anyone else, just as flawed, just as capable of brilliance, just as worthy of being valued by the same standards that one would apply to anyone else.

Excerpt from Chapter 1 of “Pale Highway”

Gabriel stepped up to the gate, wrapped his fingers around its frosty metal bars, and stared out at the mundane gravel parking lot that was his excuse for a view. He could smell the saltwater. The beach was so close, just a short way down the big hill on the other side of the building. Out of sight and out of reach. He’d asked numerous times if he could walk down to it, but they’d never permitted him to do so, not even with supervision.

He closed his eyes and listened to the waves, trying to feel them and to remember the sensation of water splashing against his bare skin. He imagined his old sailboat and the gentle rocking motion beneath his feet as the moon shimmered over the ocean.

“Zero,” he whispered. “One, two, three, five, eight, thirteen…”

He placed a cigarette in his mouth and sat down at his regular spot over in the white gazebo, where all the smokers were supposed to do their dirty business. He patted his pockets, searching for a lighter. Nothing. He’d forgotten to bring it.

But it wasn’t his fault. He was expected to forget everything because he was the lucky recipient of life’s final going-away present, that red velvet, chocolate-covered cake of wonderfulness that the doctors liked to call Alzheimer’s. With Alzheimer’s, suddenly nothing was his fault anymore. No fault. No blame. No choice. No freedom.

Many decades ago, someone had once told Gabriel that he had “an amazing mind.” The compliment had meant a lot to him. His mind had defined him.

Not anymore.

Redefining Alzheimer’s

One of the frequent problems that we may run into when discussing Alzheimer’s with others is that, sadly, many people still believe that Alzheimer’s is normal. It isn’t, obviously. But that’s a general perception that we have to work hard to correct.

I think the problem is about framing: many people see Alzheimer’s — and the symptoms of later stage Alzheimer’s, such as memory loss, and incontinence — as simply being a “natural” part of aging, which it’s not. Alzheimer’s is not some normal progression of life. It’s a disease, first and foremost, that attacks the brain, and destroys it with plaques and tangles, slowly disrupting a person’s memories and basic capabilities. There’s nothing normal about that.

Unfairly, the reason that the public often views Alzheimer’s as normal is because it primarily affects seniors. While other diseases hit people in all age groups, the common image of an Alzheimer’s patient is one of an elderly person. Obviously, this doesn’t take into account the 5% of people who develop Alzheimer’s symptoms before age 65. Some people have even had symptoms at ages as young as 29.

But let’s step back a bit. Even if Alzheimer’s was exclusively a “senior’s disease,” why should it matter which age group it affects?

People are people. As a demographic, our elders are the ones least prioritized when it comes to medical attention, despite the fact that they are often the ones who need it the most. Working in a nursing home, I saw it all too often; the way that a person’s needs can so easily get neglected amidst the corporate entanglements of the healthcare system, the way that a person with Alzheimer’s can so easily lose the autonomy to make his or her own decisions unless an advocate is there to speak up.

This subject deserves more attention. We need to look at new systems. We need to reexamine everything, from the ground up. Alzheimer’s needs a cure. We need to take action, and before we can do that, we need to speak up — so that people can understand just how important the issues surrounding the disease truly are.

Have you read Nicholas Conley’s novel, “Pale Highway”? Share with us what you think about the novel in the comments below.

About the AuthorNicholas Conley

Nicholas Conley’s passion for storytelling began at an early age, prompted by a love of science fiction novels, comic books and horror movies. His novel, “Pale Highway,” is influenced by his experience working with Alzheimer’s in a nursing home, a subject that he has also written about for publications such as Vox. When not busy writing, Nicholas spends his time reading, traveling to new places, and indulging in a lifelong coffee habit. To learn more about Nicholas, take a stroll over to www.NicholasConley.com.

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Please leave your thoughts and comments

  • Ronda Chervin

    I read Pale Highway just to see what young writers were about. At first the setting seemed depressing, but then I got into this incredible plot and character study that seemed to be like a young writer’s cross between Stephen King and Tolkien! Read it, you’ll love it. Ronda Chervin, Ph.D., author and professor of philosophy.

  • Carla DeSola Eaton

    I cannot wait to read Pale Highway. I find myself deeply moved by Nicholas’ compassion, undergirding even this beautiful introduction. My father’s wife had Alzheimers, and when I visited I was touched by her sweet presence, and his gentle constant care for her. I discovered that she loved to social dance. Carla, a sacred dancer.

  • Carla Chervin

    I have read this on my Kindle and will buy the paperback when it’s out. I want to begin by saying what moved me most was the author’s insight into the person-hood of the characters. I have witnessed this dread disease twice and I’m ashamed to admin to falling prey to exactly what he describes in your article – these actual living, breathing people seemed like husks to me – to the extent that I fancifully hoped the “real” person was elsewhere on vacation and occasionally returned, likely against their will. Mr. Conley has ripped that fantasy from me, but it should be ripped from us, tied torn and burnt if need be: it is imperative to the fight for the right to life that we do not, even lovingly, depersonify our loved ones.

    The story is not a typical moralistic tale in any regard. It is closer to a mystery thriller which I think is both effective in terms of making for a good story, a page-turner in the best sense, and presenting the topic of Alzheimer’s in a way that is first palatable and then very slowly more painful until you come face to face with it toward the middle to end. While it is the villain of the piece, it is very much a hidden villain and the story has another major villain that can be focused upon.

    Pale Highway is a tour-de-force for a relatively young writer: it paints a red underline under the phrase “Write what you know,” and gives us hope for the future of writing in this “gimme now” digital age. The author’s style lets us know there are more profitable but less compassionate directions he could have taken. This renders the book a little rocky in a way time will smooth, in this readers opinion, but what’s most important is that it was the right decision. A condition such as Alzheimer’s isn’t an “enemy” if I can correlate my own experiences with cancer, where we face the same concept (brave fight against cancer, etc.). That Mr. Conley seems to know this is amazing to me.

    On a final note, when recommending the book to a friend, I said, “He’s managed to make a main character who is not a bit lovable and yet for whom you find yourself rooting – I don’t think I’ve seen anything like it done before.” There is a cold and stony quality to Schist (is the author laughing at us via the last name?) that never really dissipates. But if you were to see this as a fault (I don’t, rather more as a reaction), it’s made up for in spades by the rest of the cast.

    A fine book, really fine.

  • caitlinburm

    Great reviews! We are looking forward to reading “Pale Highways” ourselves, soon.

  • Dr. Karen Hutchins Pirnot

    This book sounds fascinating, Nicholas. I am a Clinical Psychologist who has been a caregiver for my brilliant husband, a college professor for forty years. Our journey is now in its ninth year and my husband requested early on that I write about our journey. My book is entitled “Nothing Left to Burn, A Caregiver’s Voice.” It is available on Amazon in both paperback and Kindle. I have recently published a companion book named “Making Love on Scrabble.” That book details the reinforcement program I have used in order to maintain a sense of trust and stability with my husband. It also is available on Amazon. Dr. Karen Hutchins Pirnot