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.
Lost in Crowds
I’m tired. We went to a recital of Amy’s today, at her school, and it was hard. Hard to concentrate, hard to be in tune with Ethan… Yes, his name is Ethan, not Shane. OMG, how embarrassing to confuse him with an old college fling. How? Why? Anyway, I must not lose the thread. Amy is playing the piano; we pay for lessons, and they had a recital today. And I wanted to be there for her, I wanted to see her play, I really did. Above all, I wanted to be there for my girl, my beautiful Amy. But it was hard, not only the music — listening to it makes me so tired — but all the people, talking, talking, talking. And I look at them and they are all strangers, I do not know these people. I always stick close to Ethan at such events, walking a step or two behind him, focusing, concentrating on his voice, so soothing, calming, listening to what he says, how he greets them by name. I can tell he’s protecting me, shielding me from embarrassment, but even Ethan can’t protect me from everyone. “Hunter, how good to see you. I haven’t seen you in town for a while. How have you been?” Suddenly, a stranger who seems to know me grabs me by the shoulder, I turn around, away from Ethan, who’s talking to someone else, and I face a face as blank as a virgin sheet of paper. “Hi, uh, I, uh, I’m fine. Thank you. How are you?” Or something along those lines. I say very little to strangers these days. Don’t want to embarrass myself. Instinctively, my hand reaches back, finds Ethan, pulls at him, and I figure my yank must’ve been indicative of my emotional state, as I hear, “Excuse me for a moment,” behind me, and a strong arm finds its way around the small of my back. “Gerald! What a surprise to see you here. Jerry was superb tonight. His grasp of the violin is amazing. How old is he now? Hunter, you do remember Jerry from last year’s recital, the way he mastered the Allegro of Mozart’s Eine Kleine Nachtmusik? He’s quite the musical genius. What was it he played today? I recognized the score but can’t remember the name of it. I’m getting old, Gerald, you’ll have to forgive me.” And just like that, my amazing husband has not only saved me but taken any and all focus away from me and turned it onto the man’s pride and joy: his musical prodigy of a son. I don’t remember what he answered. Beethoven? Shostakovich? Brahms? That was just one example I recall. It was frightening enough to have stuck with me. The rest of the evening is a blur — I have the worst headache and my shoulders are so incredibly tight from focusing and being stressed out. This is why I rarely go out these days. It’s just too frightening, too stressful. And the more I’m stressed, the more I forget. I just re-read the first two words at the beginning here, I’m tired. I am. Not just physically tired; this goes far beyond being in desperate need of a good night’s sleep, which I rarely have anymore. I have these weird dreams all the time, and I have difficulties falling asleep. Charles has prescribed some sleeping pills for me, and I’m allowed to take one, every night. I think, at this stage, they figure since I’m dying anyway, why not make it easier on me? But I’m not entirely sure it would be healthy for someone my age to be munching 365 sleeping pills per year, year after year. If I wasn’t demented already, I’d probably end up a basket case before long… Yeah, tired, tired of life, you know? I can’t write anymore, I mean, not in the sense of really good writing, capturing writing, witty writing, writing that brings home dough, writing that pays bills. Nope. Just me, the couch, and Netflix, for all it’s worth. Yet at the same time, I do cherish seeing Amy on stage, hearing her play, seeing her perform. I do look forward to Halloween, and Thanksgiving, Christmas. I have such fond memories of Holidays past, why wouldn’t Holidays future be providing me with entertainment and love, too, even as fleeting as the moment I live in? I may not remember them, but that doesn’t mean they weren’t good moments. Amy keeps telling me how great Halloween was last year. I have no reason to doubt her. Melissa called about Christmas. They want to go to Florida this year and see Dad — wondered if we might tag along. I told her to ask Ethan. I don’t care where I celebrate. I won’t remember, anyway. Am I wrapping up my life? Is that what I’m doing? Am I done? Can I steer this? Can I turn off the lights myself? Willingly? I’m not sure. Would I even want to? What I really want is to go back in time and get rid of the day I got sick. Erase it and all else would be fine. But I can’t. Those memories are all gone. Gone for good, and there is no way back. Only forward, forward into the undiscovered country, Oblivion, my future.
Disease: When Life Takes an Unexpected Turn, first published in October 2017, is available online at Politics and Prose and Amazon. For more information on Hans M. Hirschi, visit www.hirschi.se.