Nothing quite prepares you for the loss of a life partner, even books such as this one. From the stark, foreboding cover to the simple title, you can tell just what you’ll be getting at a glance. You’d be looking for a simple story of decline and eventual death, packed with emotional episodes and ending with a tastefully hopeful coda acknowledging the trauma while reminding the reader that life, ultimately, belongs to the living. And that’s exactly what you get with Disease.
Writer Hunter MacIntyre has been diagnosed with early-onset Alzheimer’s and must try to wind down his life as his health declines. Aided (and sometimes hindered) by his partner, Ethan, and their five-year-old daughter, Amy, he takes us on his journey through the Kubler-Ross model of grief as he mourns his life.
The temptation here is to wallow in those emotions, breaking occasionally for a bit of clear-eyed wisdom, but Hirschi has wisely chosen to eschew that over-emotional approach. That’s not to say this isn’t an emotional book. By using an epistolary style, however, Hirschi provides a welcome layer of distance. Hunter’s diary entries carve up the experience, proscribing the incidents and giving them clear borders and boundaries. Alternating those with the survivor’s point of view, written as reactions to those diary entries, sets up an incident/reaction chain that allows the reader to consume Hunter’s demise in more easily digestible chunks.
As the survivor of a similar experience, I well understand the markers and signals of decline, the importance of birthdays and “last” holidays, the joylessness beneath the joy of a “good day,” and the aftermath of grief. Hirschi hits all these points with deadly accuracy but never belabors them. He understands the situation has enough inherent drama and rarely stoops to wringing any extra out of the text (the lone exception to this is a piece of jewelry). By letting the reader’s reactions work for him, Hirschi turns a potential tear-jerker into a book which will induce those tears without overt manipulation.
The other bit of brilliance here is that–and I have to be vague to avoid spoilers–the deathbed scene is never shown. One would think missing that key element would leave the reader unsatisfied, but not following this to an overdone and cliched ending takes Disease out of maudlin company and puts it in a class by itself, rather like that tree on its cover. We know what that ending would have been like, and I enjoyed the characters enough that I didn’t want that for them.
I’ll be honest. When I picked this up, I first thought “grief porn” and put it aside. However, I’m glad I second guessed myself and read it. Hirschi has done an admirable job in telling this story. Recommended without hesitation.
© 2017 Jerry L. Wheeler