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moonwillow's review
5.0
I received an ARC of this book in exchange for an honest review.
Hans Hirschi’s Disease is a brilliant and highly emotional journey into a horrible illness, told from the point of view of the sufferer, with snippets of comments added by his husband and daughter.
Hunter is a writer and when he is diagnosed with early onset Alzheimer’s he begins to record his life, his daily struggle with his diagnosis, prognosis, the symptoms and how he feels about losing the world and the loved ones around him. His husband, Ethan, finds the diary after Hunter’s death, and adds notes to explain some of the difficulties from his point of view, along with some shocking revelations that truly caught me off guard.
Despite what seems like a dire story line with a predictably sad ending, this does not feel like a tragic story. The diagnosis is tragic, of course it is, and knowing that there is no cure, and that Hunter will lose everything before he loses the battle is also tragic, but amidst all the sadness there is a glimpse of a life lived and a soul that loves and is loved in return. It is horrifically sad, but Hans does an incredible job to keep the balance just right.
I cried, oh yes, I cried more than once, and at times had to put the book down and walk away because it upset me so much. I defy anyone who has watched a loved one disappear before their eyes because of this horrible disease not to find this book a challenge to read, but at the same time, it is such an important story because it is told from the point of view of the sufferer. This is something we, as onlookers, never see. We see what is lost to us, yes, but never what is going on in that slowly disappearing mind. Disease let’s us see this from Hunter’s unique perspective, and tells how he feels on a day to day basis. He tells how his world is being slowly stolen away from him and replaced by something no one understands, not even his closest loved ones and least of all, him.
I knew this book would be an emotional roller coaster from the very beginning. There is no massive shock reveal. We know Hunter is going to die. He tells it how it is. It begins with him describing his initial diagnosis and the build up to why he sought help. We then follow him through his ups and many downs. It doesn’t bear thinking about just how awful it must be for him to know that he won’t see his daughter grow up, or that he will be leaving his husband to raise her on his own. All of these subjects are explored with feeling and a stark reality that is touching and beautiful.
Hans handles all the legal issues of a same sex couple trying to make sure their family stay together and are provided for after a death, with a calm acceptance that is heartbreaking. It isn’t enough that they have to cope with Hunter’s disease, they also have the legal struggles faced by most same sex couples in this world. Our society needs a kick up the backside when it comes to basic human rights and if you didn’t know that already, you need to read this book. This is just one family’s struggle.
Hans is a brilliant writer and this book should be on everyone's shelf.
Hans Hirschi’s Disease is a brilliant and highly emotional journey into a horrible illness, told from the point of view of the sufferer, with snippets of comments added by his husband and daughter.
Hunter is a writer and when he is diagnosed with early onset Alzheimer’s he begins to record his life, his daily struggle with his diagnosis, prognosis, the symptoms and how he feels about losing the world and the loved ones around him. His husband, Ethan, finds the diary after Hunter’s death, and adds notes to explain some of the difficulties from his point of view, along with some shocking revelations that truly caught me off guard.
Despite what seems like a dire story line with a predictably sad ending, this does not feel like a tragic story. The diagnosis is tragic, of course it is, and knowing that there is no cure, and that Hunter will lose everything before he loses the battle is also tragic, but amidst all the sadness there is a glimpse of a life lived and a soul that loves and is loved in return. It is horrifically sad, but Hans does an incredible job to keep the balance just right.
I cried, oh yes, I cried more than once, and at times had to put the book down and walk away because it upset me so much. I defy anyone who has watched a loved one disappear before their eyes because of this horrible disease not to find this book a challenge to read, but at the same time, it is such an important story because it is told from the point of view of the sufferer. This is something we, as onlookers, never see. We see what is lost to us, yes, but never what is going on in that slowly disappearing mind. Disease let’s us see this from Hunter’s unique perspective, and tells how he feels on a day to day basis. He tells how his world is being slowly stolen away from him and replaced by something no one understands, not even his closest loved ones and least of all, him.
I knew this book would be an emotional roller coaster from the very beginning. There is no massive shock reveal. We know Hunter is going to die. He tells it how it is. It begins with him describing his initial diagnosis and the build up to why he sought help. We then follow him through his ups and many downs. It doesn’t bear thinking about just how awful it must be for him to know that he won’t see his daughter grow up, or that he will be leaving his husband to raise her on his own. All of these subjects are explored with feeling and a stark reality that is touching and beautiful.
Hans handles all the legal issues of a same sex couple trying to make sure their family stay together and are provided for after a death, with a calm acceptance that is heartbreaking. It isn’t enough that they have to cope with Hunter’s disease, they also have the legal struggles faced by most same sex couples in this world. Our society needs a kick up the backside when it comes to basic human rights and if you didn’t know that already, you need to read this book. This is just one family’s struggle.
Hans is a brilliant writer and this book should be on everyone's shelf.
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