About the Book
Author: Hans M Hirschi
Title: Disease: When Life Takes an Unexpected Turn
Release Date: October 26, 2017
Publisher: Beaten Track
Length: 196 pages
Categories: Gay fiction, relationships, family, Alzheimer’s
When journalist Hunter MacIntyre is diagnosed with early-onset Alzheimer’s, he realizes that his life is about to change, not to mention that he’s been handed a certain death sentence.
Alzheimer’s is a disease affecting the patient’s loved ones as much, if not more, than the patient themselves. In Hunter’s case, that’s his partner Ethan and their five-year-old daughter Amy. How will they react to, and deal with, Hunter’s changing behavior, his memory lapses, and the consequences for their everyday lives?
Disease is a story of Alzheimer’s, seen through the eyes of one affected family.
I read this book over the course of two days. For me, it was a drop-everything-and-read kind of story. Deeply moving and personal, it is the kind of book that requires focused attention and reflection.
There are plenty of books available that address death and dying, usually from a surviving loved one’s point of view. There are also books about being given a fatal diagnosis, often glossing over or never reaching the end, and books from an insider’s perspective on living with conditions affecting the brain. However, I’m not aware of many (if there are any) which show dementia from inside the sufferer’s head. Certainly none that also address the unique issues facing the LGBTQ+ community when a partner or non-legal parent has Alzheimer’s.
The author has a particular knack for storytelling which invites the reader in to experience life deeply through the characters’ eyes. So, too, with bringing an almost animate quality to non-living parts of the story. This time, Hunter’s Alzheimer’s is simultaneously something within him and yet also almost its own being.
It is heartbreaking to watch Hunter’s progression from the frustrating brief forgetfulness to his increasingly disjointed patterns of thought. Even though he tells us his story on “good” days, there is still an obvious downward slide as his thoughts become tangled. Ethan’s interspersed commentary gives us a much-needed breather and some realism. This plays well into the sense of push-pull between Hunter’s desperation in hanging onto his faculties and his losing battle.
The story unfolds journal style, with Hunter providing us as much detail as he can about his worsening condition. He often interjects his existential musings as well, which feels only natural for a dying man. Sprinkled throughout is the repetition of his question on what makes us human. He wonders if it is our brain’s wiring, our ability to think in complex ways. This comes up often as he feels himself losing that ability. Yet even as he tells us his views, what he shows us is another story. The thing that makes us most human is our capacity for love. Hunter never loses his, not even in the last stages of his battle.
This is not a story with a traditional happy ending, but neither is it a story devoid of hope. What is evident, even through Hunter’s growing paranoia and memory loss, is his deep love for his family. Ethan’s gentleness and Amy’s sweetness both reflect the kind of man Hunter is at his core. The feelings Ethan expresses at the end are devastatingly real, although I suspect some readers may find themselves shocked by his candid expression.
This book is a must-read for anyone who wants to understand the complexities of living with, and dying from, an illness that slowly robs a person’s mind. It is finely crafted in a way that feels respectful toward the depth of emotions.
For a heart-wrenching story, achingly real characters and situations, and a glimmer of hope, this gets 10/10 fountain pens.
About the Author
Hans M Hirschi has been writing stories since childhood. As an adult, the demands of corporate life put an end to his fiction for more than twenty years. A global executive in training, he has traveled the world and published several non-fiction titles as well as four well-received novels. The birth of his son provided him with the opportunity to rekindle his love of creative writing, where he expresses his deep passion for a better world through love and tolerance. Hans lives with his husband and son on a small island off the west coast of Sweden.