It’s release day for Disease, and I can’t wait for you to read this one…
“How do you explain Alzheimer’s to someone who doesn’t have it?
It’s really impossible. One moment, you’re just like everyone else—talking, having fun, being part of a conversation—and then boom! You forget something, a word, a face, a memory, something that belongs right there, in that conversation. You stand there, in that circle of people, and that which you have forgotten becomes the elephant in the room, with everyone staring at you, waiting for you to remember. And you panic, you get stressed, and yeah, at that point, you’ll never remember it anyway.
People laugh at it when they think you’re just like them. Normal. Healthy. Not so much when they know you have it. The disease.
“Don’t worry, Hunter. We all forget stuff. It’s no big deal.” But it is a big deal. It is a very big fucking deal. It’s my memory—my life literally turning to goo inside my head. This thing is going to kill me!
Not that I’d ever say anything. People get antsy around sickness, around disease. So I keep my mouth shut. I drop out of conversations. Slowly. Retreat into the safety of my thoughts. For what it’s worth. For what’s left of them. If Ethan is with me, maybe I’ll take his hand, award him a glance. He knows of my pain. He’s the only one who really understands how I feel. At least, I like to think so.
Have you ever read The Neverending Story by Michael Ende? at is exactly how my mind is. Like Fantastica. Well, sort of. My mind was never really fantastic to begin with… But, just like the novel, Nothing is taking over, and little by little, it breaks down my mind, my Fantastica. Only there is no Bastian to rescue me. No Atreyu going off on adventures on my behalf. No Falcor to fly to my aid. Just the Nothing. Taking over, bit by bit. And you never know what’s next to go.”
Release day, and when Amazon finally opens the floodgates and sends the book to all those who pre-ordered it (thank you btw), I’ll be approaching the runway for a landing at Munich airport. So yeah, this is a pre-recorded post. Sorry. It’s my fifteenth release day since I began writing, and while I’m not feeling particularly nervous this time (I have seen so many gorgeous reviews already that I know the book will be well received), I feel a sense of accomplishment, pride. I hope you’ll forgive an old man’s indulgence. Yes, pride is a good word.
I also feel thankful to Hunter, Ethan, and Amy, for allowing me to tell their story. And I am grateful for the time I got to spend with my mother, herself a victim of the wretched disease that is Alzheimer’s, and in a way a template for Hunter’s mother. Through mom, I got to experience some of the later stage symptoms first hand, the emotional turmoil, the paranoia, and all the other symptoms that are associated with the disease, like losing your appetite, your sense of taste etc. While Hunter’s story is rooted in my own fears of having Alzheimer’s (unfoundedly as it turned out), his struggle helped me play with various scenarios of how we, as human beings, deal with a death sentence. To be handed a best before date is probably one of life’s greatest challenges, and Hunter allowed me to pitch various scenarios, different viewpoints against each other. In a way, Disease isn’t just about Alzheimer’s, but it’s a story about life, living life to the fullest, but also about our own control of our own fate, society, and our friends and families. At least philosophically.
Why read Disease? I’ve been asked this question many times. Whether you’re personally affected by Alzheimer’s (through family or loved ones) or if it’s just a theoretical concept for you at this stage, you can read the story from the above perspective, see how we rise to adversity, how we play the hand that life has dealt us. But Disease is also a love story, romantic even (yeah I know, I’m a sappy romantic even when I kill my main character in the end), showing how two people love each other, stand by each other, no matter what (and I mean this literally). Or you could read the story to understand, to fathom how and why Alzheimer’s Disease is such a wretched thing to happen. I’ve been told by many reviewers just how cathartic a read it is:
“As I medical professional, I have encountered this illness. I have been caregiver to one particular patient and it is heartwrenching and not the best feeling. It makes one exam their own mortality and question: How brave will I be if this were me?”
My gratitude to Hunter, Ethan, and Amy for sharing it with me, allowing me to tell you their story. But now it’s time for me to let them go. They are yours now, and I shed a few tears as I take my leave from them and place them in your care, and I ask you: “how brave are you?”
Hans M Hirschi