Disease begins in 2010 when, in his early forties, Hunter is diagnosed with early-onset Alzheimer’s. What follows is Hunter’s journal of the next five years as his mental state deteriorates and he attempts to hold on to his memories and his relationships with his long-term partner, Ethan, and daughter, Amy.
I only finished Disease an hour before writing this and the tears are still drying on my face. To try and put my feelings about Disease into words is going to be difficult and I know that I will fail to do Hans M. Hirschi justice. To call Disease a story seems unfair. At no point did I feel that I was reading a piece of fiction and perhaps this reveals Hirschi’s talent as an author. Hunter’s memoirs deal with a very real subject matter and his journal, which he does not believe anyone will read, chronicles his good and bad days and his fears. For me, the most emotional sections are those during which Hunter talks about assistive suicide and when this no longer becomes an option, he lists the means by which he can kill himself. Admittedly, this is depressing, but there are also hundreds of thousands of people suffering from dementia at the moment – in the UK alone – and this number is set to rise to over 1 million in the next ten years. For all of these people, the thoughts that Hunter expresses could be a reality; the thought of death more comforting than losing their dignity and identity.
I think it is really important that during Disease, Hunter’s narrative is punctuated at intervals by Ethan’s retrospection. Ethan gives the reader a deeper insight into Hunter’s demise and Ethan’s own struggle with losing his loved one adds a genuine emotional context. Ethan is sharing Hunter’s journal with us after finding it in 2017 and sadly makes us aware of Hunter’s death early on. This did not have any impact on my reactions and the tears still flowed freely during the latter stages of Disease. For me, Hunter’s death is just another stark reminder of the reality of dementia and that no matter how rapidly medical science progresses, there is still no cure for this cruel illness.
I wanted to read Disease for a very personal reason. As Ethan points out, trauma can be a catalyst for Alzheimer’s and this was definitely the case for my nan. Following my grandad’s death, my nan’s dementia progressed rapidly and though at that time she was 90, it did not seem any less fair. In Disease, Hirschi addresses the issue of losing a loved one to dementia prior to their actual death and this really resonated with me. I will always feel guilty for the fact that I stopped visiting my nan three months before she died because the good days were so few and the bad days in which she would call me by someone else’s name or become angry, were regular. I found reading Disease difficult, but cathartic, and would like to thank Hirschi for this experience.
Clearly, Hunter’s Alzheimer’s is the focus of Disease, but Hirschi also approaches issues that affect the LGBT community. Hunter’s journal is written before same-sex marriage was legalized in the US, and from this arises Hunter and Ethan’s concerns about the status of their relationship after Hunter’s death. Although Amy has been brought up as Ethan and Hunter’s daughter, she was born using a surrogate and legally Ethan is the only parent she has. The legal standpoint does not change Amy’s opinion, but it is significant that Hirschi addresses the unfair struggles that the community have faced.
Disease is not light-hearted and nor does it have a happy ending. Hirschi’s writing is raw, honest, and heart-wrenching. Despite this being a painful journey for me, Disease is one of those books which will stay with me for a long time to come.