Disease

By Hans M Hirschi

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.

• Language: English
• Publisher: Beaten Track Publishing
• Release date: Oct 26, 2017
• ISBN: 9781786451620

Hans M Hirschi

Hans M Hirschi has been writing stories since childhood. As an adult, the demands of corporate life put an end to his fiction for more than twenty years. A global executive in training, he has traveled the world and published several non-fiction titles as well as four well-received novels. The birth of his son provided him with the opportunity to rekindle his love of creative writing, where he expresses his deep passion for a better world through love and tolerance. Hans lives with his husband and son on a small island off the west coast of Sweden.

Book preview

2010

October 1st

Diagnosis

I’m sorry, Hunter. The results are conclusive. You have the early onset of Alzheimer’s disease. I know it’s rare, particularly for someone your age. But sadly, it’s not unheard of. Early-onset Alzheimer’s isn’t something we fully understand, but given that your mother had it, and your grandfather, those are strong indications that your family carries a genetic predisposition.

Is there nothing we can do? More tests?

More tests won’t change the outcome of this. You’re of course welcome to get yet another opinion, but I would strongly recommend we begin treating you, to slow it down. You have a family to consider. Ethan, Amy. You have to fight this, for them, not just for your own benefit. I’m sorry, Hunter.

Charles, our family doctor, continued to watch me with a desperate look on his face, probably mirroring my sense of utter devastation.

I remember getting up, telling him I had to think, him telling me to talk to Ethan, to call him anytime, that time was precious, blah, blah, blah.

I’m dying. A slow death, but still. I’ve been handed a death sentence. I’m sitting in my car, somewhere on the road between my doctor’s office and home. I had to pull over as a wave of tears came over me all of a sudden. Dying. Amy is barely five years old. She’ll grow up without me. I’ll never meet the people she’ll fall in love with, the people who’ll break her heart…never be able to comfort her, dry her tears. I’ll never meet my grandchildren. I won’t be there for her, and Ethan will have to care for me, until I’m so sick they move me to a nursing home, to wither away and die, a vegetable, a useless sack of bones, skin and flesh lying in a bed all day, unable to feed himself, unable to do anything.

Dying. Withering away. My brain is slowly turning to Jell-O.

How. The. Fuck. Do. You. Deal. With. That?

October 2017

Hi!

My name is Ethan. I am…was…Hunter’s partner. I found his notes, and this diary he kept, a few months ago—roughly eighteen months after he passed away. I do not recall how many times I have read them, over and over, trying to make sense of them, trying to see when things began to change.

Needless to say, it was before he started writing things down, before the page you just read. For some time, I didn’t know what to do with his scribbles, these notes, this document. Were they merely his private thoughts, not meant to see the light of day? Or did he hope I would take them and put them out there somehow? Did he write this down for his own benefit only? How regularly did he go back and read them? Did it help him in any way? He does make a reference to that somewhere. Did he subconsciously consider me and Amy? Did he want our daughter to see this?

We never talked about it. Not once. I didn’t even know he’d written about the disease and how it affected him. It was pure fluke that I even discovered them. I was about to wipe the hard drive and get it ready for Amy to use when I accidentally stumbled across the file. Seeing the date he’d created it…

I will never forget that date. October 1, 2010. I had a hunch it might have to do with the visit to the doctor, the day he was told about his Alzheimer’s.

So please, bear with me, as you read Hunter’s notes. I have edited them—lightly—because I feel it is important that you understand how his language, his thinking—even his personality—changed as his Alzheimer’s progressed. How the brilliant journalist and writer lost his most important tool: his ability to think clearly. Unfortunately, and this is one of the symptoms of the disease, he only wrote on what we referred to as good days, i.e. times when he was in the now, rather than confused, or traveling between distant memories, or worse, making things up.

Mostly, I have left his notes as they were, but I’ve allowed myself to add a bit of commentary where I felt it was necessary, to provide perspective, because, in all honesty, the disease began to distort his perception of life, of us, sooner than we’d expected.

I am not a writer; I am merely the widower of a man who passed away almost two years ago. Amy is almost a teenager now, and it was for her school work I tried to get the laptop ready. We both miss Hunter, every day.

Thank you,

Ethan

October 1st

Clouds on the Horizon

Dinner was a quiet affair today. Ethan said little, and Amy poked at her food with a fork. We haven’t told Amy anything, but the kid is so smart. She picks up on our emotions long before we realize we’re restless, angry, or sad, and reflects them right back at us. Tonight, our daughter seemed a million miles away, distraught, and I realized, once again, she was mimicking my own emotional state. She’s a smart five-year-old, our Amy.

I was gone, mentally, somewhere far away, where I didn’t have to deal with the inevitable. The D word. Neither does Ethan. He sat opposite me, eating his dinner, seemingly with no appetite. He had known for some time—ever since I first demanded to see a doctor for my weird memory lapses. Back then, he’d laughed it off.

Babe, it happens to everyone. Don’t overthink this. Don’t read anything into it… It’s just stress. It happens to all of us, forgetting stuff.

I had forgotten Amy’s preschool performance. I had fucking forgotten the single most important day of my daughter’s scholastic year. Why? Well, that was what I’d wanted to find out. Oh, Amy had been crying that night, and she didn’t speak to me when she and Ethan came home. And I felt like a shit, a loser, the worst dad in the history of the Universe’s Worst Dads Pageant. It made no sense. I’d been looking forward to the day, to seeing Amy perform with her classmates, and I forgot all about it.

It was the proverbial straw. I’ve never been great with remembering things. I forget names as quickly as they are uttered to me—I barely remember what I’ve eaten for lunch the same day. But I was good at remembering other things. Emotions, smells, episodes…my daughter’s most important day in school.

Then Mom got Alzheimer’s. By the time she was diagnosed, it was too late. She was too far gone, she’d always been protected by my dad, who compensated for her crazy behaviors and the odd things she’d say. He always made sure people didn’t get it, didn’t suspect anything, simply attributing it to her character—her quirky, somewhat distraught personality. By the time she got the violent outbursts, and constantly accused my dad of cheating on her and stealing from her—when her paranoia became too much even for my dad to handle—it was too late. Too late to tell her, too late to medicate, too late to slow down the disease, to halt it even for a little while.

Within a few months of the official diagnosis, Mom’s persona was dead; it took her body a few extra years to catch up with the rest. Soon after her body had died, Dad moved on to greener pastures with a new lady by his side. You know what they say about fire and smoke? Seems Mom’s suspicions had not been entirely unfounded. Her female instincts had been right all along. Or maybe she had known more than she’d let on? We will never know.

That was almost six years ago. She never got to meet Amy. Named after my grandmother, Amy is Ethan’s daughter, born to a surrogate, and for the first time, I’m really happy she isn’t mine. No, not like that. I love that girl more than life itself. I would do anything for my girl. But she’s not genetically mine, and thus safe, from the disease. Small mercies.

Do we tell her? She’s so young. And I have so little time left.

October 2017

Seven years ago, and I remember that night as if it were yesterday. October 1, 2010 was the day we sort of lost Hunter. He wasn’t exaggerating when he said he’d always had a bad memory, but heck, we all forget things, right?

But when he missed Amy’s school performance, even I got worried. It wasn’t as if he had anything else to do that day, and he’d clearly marked it in his calendar. He just forgot. So, he called Charles, set up the appointments with specialists to do all those neurological tests, and for a week or so, we were left in limbo.

I don’t even know how to say this, but in a way, my worst nightmare could not have prepared me for the news he brought home. When he’d first called Charles, my thoughts went along the line of drama queen, he’ll be fine. Never in a million years could I have imagined him coming home with a death sentence.

Hunter and I had met back in 1990, and we were both really young. I was twenty-three; he was two years older. I met his family shortly after we knew we were serious, and Hunter’s mom and I had gotten along quite well.

We’d been a couple long before Janice had gotten her diagnosis. But nobody ever said anything about Alzheimer’s being hereditary.

October 15th

Medicating

I’ve begun to take medication. The doctor says it’ll slow the progression of the disease. Not halt it. No, I’m still dying. It’s been two weeks since the final diagnosis was given. I hid, called in sick at work, stayed at home, moping, feeling sorry for myself.

Then I realized I was being an idiot, an egotist. I have to live, I have to try to fight it. If not for me, then for Amy. For Ethan. That’s almost the worst part of it all—trying to imagine how Ethan will go on, without me. He has always relied on me for all the practical things around the house. Being a famous writer, I often work from home and show up at my official work—for a large international magazine—maybe once or twice a week for staff or editorial meetings. Then I go home again to do laundry, clean the place, and make calls to people who need to be called—contractors, stuff like that. I don’t have to adhere to the rigid schedule of a high school like Ethan, the teacher.

How is Ethan going to cope? How is he going to find the time to cook, clean, do laundry and work? And still have time for Amy? What about Amy? How will she react to losing her papa? What will it be like to grow up with a lonely, possibly bitter, widower? Will she make friends in school? Be bullied like me? Who will look out for her? Should I talk to her teachers? Be a pain in the ass of principals to make sure Amy gets the attention she deserves?

Who will be there to put Band-Aids on her scraped knees in the future? Who will comfort her when she’s sad? Who will be there to have the talk with her? Who will sneer disapprovingly and stare menacingly when she brings home her first love to meet the parents? No, the parent. Ethan will be there. Not me.

That’s when it dawned on me. I have to fight this. I have to take the medications. To be there. For Ethan. For Amy. For as long as my brain continues to function. Somewhat, anyway.

I’ve been prescribed something called a cholinesterase inhibitor, to slow down the degradation of my synapses and brain cells and stop the tide of mush building up inside my head. Slow the Jell-O. I have no choice, remember? Ethan…Amy…

Dying.

It’s. Fucking. Unfair!

December 1st

Working

What am I going to do today?

Huh! Caught you, didn’t I? You thought I’d forgotten something. But I haven’t. I’ve begun to seriously write down everything I need to remember. I don’t want to experience missing another one of Amy’s recitals. Not. Ever. Again.

I’ve got an article which is due today. I’ve been researching it for weeks. It’s a travel piece. Ethan and I spent a few days in Rome with Amy last year, and the magazine wants me to write a piece about traveling with kids. You know, get a fresh perspective, Connor, my editor, said. You, as a gay parent, probably experience things differently than normal families.

He actually said that. Normal! What an idiot!

But money is money, and I figured I’d try to make as much money as I can for Ethan and Amy while I still have my wits about me. How do you explain Alzheimer’s to someone who doesn’t have it?

It’s really impossible. One moment, you’re just like everyone else—talking, having fun, being part of a conversation—and then boom! You forget something, a word, a face, a memory, something that belongs right there, in that conversation. You stand there, in that circle of people, and that which you have forgotten becomes the elephant in the room, with everyone staring at you, waiting for you to remember. And you panic, you get stressed, and yeah, at that point, you’ll never remember it anyway.

People laugh at it when they think you’re just like them. Normal. Healthy. Not so much when they know you have it. The disease.

Don’t worry, Hunter. We all forget stuff. It’s no big deal. But it is a big deal. It is a very big fucking deal. It’s my memory—my life literally turning to goo inside my head. This thing is going to kill me!

Not that I’d ever say anything. People get antsy around sickness, around disease. So I keep my mouth shut. I drop out of conversations. Slowly. Retreat into the safety of my thoughts. For what it’s worth. For what’s left of them. If Ethan is with me, maybe I’ll take his hand, award him a glance. He knows of my pain. He’s the only one who really understands how I feel. At least, I like to think so.

Have you ever read The Neverending Story by Michael Ende? That is exactly how my mind is. Like Fantastica. Well, sort of. My mind was never really fantastic to begin with… But, just like the novel, Nothing is taking over, and little by little, it breaks down my mind, my Fantastica. Only there is no Bastian to rescue me. No Atreyu going off on adventures on my behalf. No Falcor to fly to my aid. Just the Nothing. Taking over, bit by bit. And you never know what’s next to go.

That’s not actually true: I’ve read up, all right. I know it’s my short-term memory going first, which will make it difficult for me to function in my daily life. Then, as the disease progresses, I’ll lose my memories, usually being eaten from the latest ones, backward through adult- to childhood. Eventually, my mind will only remember things farther and farther back in time, until I lose the ability to talk, to dress, to eat, and I become a baby once again—a newborn in the body of a middle-aged man.

Finally, my brain will lose the ability to control and run my bodily functions, and my body will die, either because my brain forgot to keep the heart pumping or because I forgot how to breathe. Nice prospect.

Not today, though. Nope. You probably thought I’d forgotten about the travel assignment by now. Am I right? Huh? Be honest.

No such luck. However, since I’m apparently not a normal parent, according to Connor, I have no clue how normal parents travel with their kids. I decide to call Emily. She’s normal—married to lovely Keith, a pleasant enough forty-something guy with a fully developed dad-bod, and they have two kids just a couple of years older than Amy. Emily is our sports editor. She travels, too. I’m sure she knows what it’s like when normal people travel.

Sports desk. Emily speaking.

Hey, Em. It’s me, Hunter.

Hunter, hey. How are you doing? What can I do for you?

It’s the assignment on travel Connor has me working on. He wants me to write this piece on gay travel with kids. He seems to think we’re special somehow. And since I can’t figure out how, I thought I’d call you. You’re sort of normal, aren’t you?

He said what? That man is such a homophobic jerk. Shoot, what’s on your mind?

"I don’t know. I honestly don’t know how straight, sorry, normal people travel. I mean, I always travel gay—on gay airlines, in gay economy seats, eat gay snacks, drink gay soda and gay beer. What does a heterosexual meal taste like? Are your heterosexual hotel rooms any different than ours?"

Testy today, aren’t we?

I’m sorry. I didn’t mean for you to get caught in the middle of this. It’s just that it’s such a moronic assignment. How am I different as a father than Keith? Do you know?

"Okay, now we’re getting personal. But you’re right. You’re