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, … 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.
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Beautifully Written and Heartbreaking
Today I just finished reading, Disease by Hans M. Hirschi. It is as beautifully written, as it is heartbreaking. This is not a lite fun read that you pick up on vacation to relax. This is a story to make you think and feel.
Disease is about one man Hunter MacIntyre who has recently been diagnosed with early-onset Alzheimer’s. He decides to keep a journal of his disease as a means to hang on to his memories. But the story isn’t only about Hunter it’s about Ethan and Amy (Hunter’s husband and daughter) Ethan, Hunter’s partner, also tells the other side of the story addressing sections of the journal that Hunter has written. At first this is more about context to explain how he found the journal. However, as you move through the story and Hunter’s disjointed thoughts and memories Ethan’s interjections becomes more about telling the reader what is really going on as Hunter get’s worse.
As I mention this is heartbreaking story, but so powerful and wonderfully written that anyone who has a loved one who is suffering with Alzheimer should read it. The author paints a real picture of how this awful disease not only affects the individual with the disease but their entire family.
I love that Hans, took this painful topic and showed it to us through the eyes of a LGBT family, especially since this story takes place prior to Marriage Equality becomes legal in the United States. This is important part to the story, as the couple has to consider all the legal ramifications that could affect their family. It’s painful to think about, and read, just how terrifying this reality has been for many people.
If you’re looking for a break from fantasy, romance, Science Fiction, or whatever definitely check out this story. Be warned you’re going to need a lot of Kleenex and you may want to take a few breaks to hug your kids and call your parents.
I have read quite a few books by Hans Hirschi (not all, but I might get there given time) and have enjoyed them, no matter what the genre. The author is not somebody who writes thinking about the market or the latest trend. He writes stories he cares about, and beyond interesting plots and fully-fledged characters, he always pushes us to think about some of the big questions: prejudice, ecology, poverty, child abuse, families, laws, gender, identity… If all of his stories are personal, however fictional, this novel is perhaps even more personal than the rest.
As a psychiatrist, I’ve diagnosed patients with dementia (Alzheimer’s disease or other types), I’ve assessed and looked after patients with dementia in hospital, and I have seen, second-hand, what the illness does to the relatives and friends, and also to the patients, but as an observer, from outside. I’ve known some people who have suffered from the condition but not close enough to be able to give a personal account.
The novel tries to do something quite difficult: to give us the insight into what somebody suffering from Alzheimer’s feels, what they think, and how they experience the process of losing their own memories and themselves. The book is written in a diary format, in the first person, by Hunter, a man in his forties who, after some episodes of forgetfulness, goes to the doctors and is diagnosed with early Alzheimer’s. He writes articles for a living, is married to Ethan, who is a high-school teacher, and they have a five-year-old daughter, Amy (born of a surrogate mother, and Ethan’s biological daughter). They live in Michigan, where they moved to from California, and therefore they are not legally married, as that was not an option at the time. To the worry of his illness and how this will affect him (Hunter’s mother also died of the condition, so he is fully aware of its effects on its sufferers), are added the worries about practicalities, about Amy’s care, about financial stability, about his own care, as they are not a couple with equal rights in the eyes of the law.
Hunter’s diary is framed by Ethan’s narration. Ethan finds the file of the diary a couple of years after Hunter’s passing and decides to publish it, mostly letting Hunter’s words speak for themselves, but at times he clarifies if something Hunter narrates truly happened or not, or gives us his own version of events (for instance, when Hunter gets lost). Although the story is mostly written by Hunter and told from the point of view of the sufferer, Ethan’s brief contributions are poignant and heart-wrenching, precisely because we do get the sense that he is trying so hard to be strong, fair, and to focus on his daughter. He accepts things as they are and is not bitter, but the heavy toll the illness has taken is clear.
The novel ends with a letter written by Amy. Although brief, we get another perspective on how the illness affects families, and through her eyes we get to know more about how Ethan is truly feeling. A deeply moving letter that rings true.
The characters are well drawn, and even when the progression of the illness means that some of the episodes Hunter describes might not be true, they still give us a good insight into his thoughts, his illusions, and his worries. He writes compellingly and beautifully (although there are is evidence of paranoia, ramblings, and some disconnected writing towards the end), and the fact that his writing remains articulate (although the gaps between entries increase as the book progresses and he even stops writing when he misplaces the file) fit in with research about preservation of those skills we have used the most and are more ingrained. Hunter pours into his diary his thoughts and experiences, some that he has never shared in detail with anybody (like being trapped at a hotel in Mumbai during a terrorist attack), and others that seem to be flights of fancy or wishful thinking. He shares his own opinions (his dislike of nursing homes, his horror at the thought of being looked after by somebody he doesn’t know, his worries about the future, his memories of the past…) and is at times humorous, at times nasty, at others indignant and righteous. He is not a cardboard cut-out, and neither are any of the other characters.
Apart from the personal story of the characters, we have intrusions of the real world, including news, court decisions, that ground the events in the here and now, however universal they might be, but wherever you live and whoever you are, it is impossible not to put yourself in the place of the characters and wonder what you would do, and how much more difficult things are for them because they are not a “normal” family.
This is an extraordinary book, a book that made me think about patients I had known with similar diagnosis, about the difficulties they and their families face (there are not that many nursing homes that accommodate early dementia, and most of those for elderly patients are not suited to the needs of younger patients), about end of life care, and about what I would do faced with a similar situation. The book does not shy away from asking the difficult questions, and although it is impossible to read it and not feel emotional, it tells the story with the same dignity it affords its main character.
Although there is a certain degree of intrigue from the beginning (we do not find the exact circumstances of Hunter’s death until very close to the end) that will, perhaps, contribute to reading it even faster, this book is for readers who are interested in dementia and Alzheimer’s (although it is not an easy read), who love well-drawn characters, deep psychological portrayals, and stories about families and their ties. A great and important book I thoroughly recommend and another first-rate addition to Mr. Hirschi’s oeuvre.
I received an ARC copy of this book and I freely decided to review it. Thanks to the author and the publisher for this opportunity.