Chapter 8
One day, you go to your computer, tap it and the screen comes to life.
You have things to do today. Emails and .
. . and other things. Work things for that guy, the one who .
. . shit, what’s his job called? It starts with an A.
Architect, that’s it. But how do you get from the picture of the flowers on the screen to doing the work you’re supposed to do?
How do you see if anyone’s written to you?
You sit, befuddled, irritated, then close your eyes.
Count to ten. When you open your eyes again, you know.
Of course you do. You click on the icons and everything is just fine.
At your annual physical, your doctor says you have anxiety and depression on top of all that perimenopause stuff.
Very common in women your age. Who’s not anxious and depressed these days?
She writes you a prescription. You take the medication as directed.
You wait. You think it’s working. But still, words slip out of your mind—the thing attached to the sink where the water comes out.
You say chickpeas instead of chicken, closet instead of drawer.
You’re restless, can’t pay attention to books or movies.
You take out a nail file, look at your nails and think, There’s no way in hell I’m going to use this on my nails.
That would be so painful. People don’t actually do that, do they?
Then you can’t remember how to unlock your door.
You have a key, and you see the lock, but .
. . nope, nothing. There’s something about the key that’s supposed to make the door open, but how?
How are you going to get inside? Finally, someone lets you in, and you rush upstairs, heart thudding in terror.
And then the next day, you know how to unlock your door. Of course you do.
You call your doctor anyway. Again. This time, she gives in and refers you to a neurologist, who can see you in, oh, let’s see . . . five months. Sorry, they’re really busy. It’s reassuring, though. You’re not a priority case. That’s got to be good news.
Finally, it’s the day of the appointment. The neurologist asks about serious concussions, Lyme disease, COVID. He asks about your parents and grandparents. Any history of Alzheimer’s? Parkinson’s? No? Parents doing well? Any siblings with dementia?
The memory test is designed to make you fail.
Count backward by seven. Give me your phone number in reverse.
Really? Can people do that on command? I’m going to say three words, and I want you to remember them.
Banana. Running. Furnace. Draw a clock that shows 11:20.
If A is one and B is two, what is C? Have you fallen recently?
Do you feel depressed? Yes! This exam is depressing you.
You find yourself justifying your answers.
“I’ve never been great at math. I’ve always been clumsy.
My mother said she should’ve put me in ballet or karate, but she never did.
Something from the news last week? Oh, gosh, last week was really busy, so it’s a bit of a blur.
Uh, those three words? I think I’m so nervous I forgot them!
” And really, who could remember those three words when the stupid doctor is interrogating you with all those other questions?
When you’ve flunked, they give you more tests, which you also flunk, and your face is flushed with embarrassment and your heart is beating too fast. They draw blood. Four weeks later, they call and instruct you to come in and talk with the doctor. No, he won’t tell you over the phone.
It’s dementia. You knew it. Deep in your bones, you knew it, no matter what your stupid doctor thought.
Fuck them, you think. Fucking fuck them.
You sit in fury while the neurologist rattles off words—amyloid-something and p-tau, which you think you might have ordered at the Vietnamese restaurant last week, and N-methyl-something.
You couldn’t remember three words, and now he’s talking to you like you’re a goddamn Nobel laureate in medicine.
He tells you most people with dementia are senior citizens—seventy-five and older.
Even with early-onset dementia, the majority are in their fifties and sixties.
And then there is the special, special subgroup of people who are truly young.
Thirties. Forties. For reasons still not clear, their amyloid proteins clump together like the mean girls in high school, bullying healthy neurons into submission, taking the best seats in the cafeteria of your memory center and not letting anyone else sit there. Such hateful bitches, those amyloids.
It’s quite rare, but you have indeed won the Shit Lotto.
Um, also, so . . . it’s a terminal condition.
Your husband bursts into sobs, surprising you with his depth of feeling and also irritating you.
Can something be about you and not him for five minutes, please?
The doctor is so sorry. How long? Gosh, it’s hard to say.
Three years? Five? No one can predict these things.
Don’t panic, says the doctor. There’s promising research on the horizon.
You might still have some good years left.
You ask what “good” looks like. Well, everyone is different.
Hard to estimate. Are you eating a Mediterranean diet?
Blueberries? Turmeric in your food? That might help.
Er . . . there are support groups that might make you feel less . . . terrified.
You go home to digest the news. You won’t make fifty.
You won’t remember your family, your friends, your home.
You won’t be able to use sharp instruments, light candles or drive your car.
There will be pity and disbelief from the people who know you.
And there will be the relief that you have it, not them.
Obviously, you don’t want your brain to congeal into a bowlful of overcooked potatoes while your body is still healthy and youngish.
No one wants to stop recognizing the people they love.
No one wants to forget how to take a shower or use a fork or swallow.
No one wants to be scared all the time because the world is terrifying and confusing.
No one wants to be a potato person, of course not. You are no exception.
You read the novel Still Alice—because you can still read—and you sob when she goes upstairs to overdose, then forgets what she was supposed to be doing. You watch the movie, too, to reinforce your takeaway: Don’t wait too long.
As the weeks pass, your spouse starts to seem irritated with you.
Like you’re forgetting on purpose. Yes, you have a disease and it’s not your fault .
. . but isn’t it? A little, maybe? Almost like a character flaw?
Because he doesn’t have it, and he’s older than you.
Maybe if you had exercised more, or drunk less wine, or meditated, or eaten more blueberries, you wouldn’t be putting them through this.
He says things like “You’ve done this a thousand times.
You seriously can’t do it?” and “Chicago? Is that the city you’re thinking of?
Chicago?” and “I already told you, it’s at eleven.
I wrote it down. Don’t you remember? Don’t you? Don’t you?”
No, you want to scream. I don’t, and stop making me feel so guilty about it! You take to lying to cover.
“Yes, of course I can do it. I was just seeing if you could do it.”
“Yes, Chicago. I just said that. Didn’t you hear me?”
“I knew it was eleven. I was just double-checking.”
The people who don’t know about the diagnosis look at you with puzzled expressions and veiled impatience. Hello? You’re just sitting there like a potato. Did you even read the book?
You wish you had cancer. It’s much more noble.
You’d get to be a warrior and people would shave their heads for you and you’d get to ring a bell when you finished chemo.
Your obituary would fawn all over you, your strength, your grace.
After losing her heroic three-year battle with cancer, she died peacefully at home, surrounded by her family.
There don’t seem to be dementia warriors.
There are confused and angry people, scared people, potato people.
You see them in the neurologist’s waiting room, their partners or children or aides dutifully telling them why they’re here for the fifth time.
The doctor’s, Mom. We’re here to see The Doctor.
Or No, Dad, we’re not in an airport. You don’t need luggage.
Exhaustion has been clawed in deep grooves on the caregivers’ faces, and they meet your eyes, assuming you’re here with a parent.
But you’re not. You’re one of them. You’ll go from slightly addled but mostly good (now) to confused to scared and needing help with everything (coming soon!) to, finally, potato. That’s your future, kid. Sorry.
The disease creeps up on you, whispering about what you’ve lost, what you will lose, how like a potato you’re becoming.
You once knew how to button up a shirt, and today, you don’t.
You used to be able to open a window, and now you can’t.
You have a thought and open your mouth to voice it, but it’s a tattered shred of fog, already blown away by the wind.
And then, guess what? You do remember how to button the shirt, open the window, follow the train of thought.
You have days and days when the words are there, you know how to work everything in the kitchen, when you feel perfectly fine.
You think, Okay, this is dementia, but I’m so young, and the medications have really progressed, so this is probably as bad as it will get.
Those days make you believe you’ve got this.
The next week, you wake up and you’re not in your childhood bedroom, and tears leak out of your eyes as you wait for doom.