Don't Stop Now
I’m sitting on my dad’s cat-hair-covered couch and interviewing him in his living room. We’re doing our best not to talk about the fact we both just learned he’s going to die of a heart condition. Outside the window behind him, snow falls on the back of his air conditioner, which he hasn’t removed yet, even though it’s a freezing Christmas in the suburbs of Boston.
“Tell me about high school,” I say.
It is 2013, and he is 70, so he has to reach pretty far back in the memory banks. His cat named Kitty — the only cat I’ve ever met that hates me — is purring on his lap.
Dad stays very still in his rocking chair, picking at his cuticles. “Mainly,” he says, “I did a lot of homework.”
I’m interviewing him because I want to know how he managed to be such a badass. Because my parents divorced when I was very young and I mostly lived with my mom growing up, I don’t know as much about him as I’d like. But I do know he’s one of the most successful people I know, a Harvard professor with an endowed chair at the School of Education who consults with organizations all over the world, from the Vatican to Sesame Street. He is wearing a pin — a gift from the Chinese government — that says “Distinguished Professor” in Mandarin.
I, on the other hand, think of myself as a perpetual failure, or at the very least a mild disappointment. I just finished studying to be a writer after screwing up two other careers, one as a field representative for a congresswoman and the other as a political scientist. Neither career worked out because I had a bad habit of working myself near to death, the glove compartment of my car filled with Pepto and Camel Lights, my Blackberry set to buzz me awake in the middle of the night to check email.
At writing school, they taught me that stories are the best way to get at the answers you need. They also taught me that stories start with trouble. If I’m going to understand his secret, I figure, I need to find his trouble.
“But did you ever get in trouble?” I ask.
“No,” he says, shaking his head. “Not really. I worked very hard.”
I stop myself before I let out an exasperated sigh. I don’t know what to do with his inspiring yet one-note American dream life story: Hard work and dedication got him from the German slums of Baltimore to a scholarship at a semi-military school to Yale undergrad, where even more hard work and dedication got him a Harvard Ph.D., and it goes on.
“Never?” I ask. “Not once, the whole time you were in high school?” I’m watching my breathing, trying not to let my disbelief show.
Don’t get me wrong. I’m proud of what he’s done, proud of his hard work. But I know there is more to his success than what he’s telling me.
“No,” he says, “not that I remember.”
I look at the little bit of hair he’s still holding onto, around the base of his head. It reminds me of the pictures I saw of him in the late seventies, when he was in his thirties, like I am now. He has a giant red-haired afro, feet in the river. The only thing missing is the joint sticking out the side of his mouth, though I’ve been told it was there off camera. I pick up a newspaper article he wrote in high school. It’s an op-ed about how rock and roll is the music of lesser men. I say, “This reads like something a principal tells a kid to write because he has something on him.”
He puts up his hands without looking at it. “I don’t remember,” he says.
“But what was it really like?” I ask. “There has to be something.”
“Something?” he says.
“Something you did that makes a good story.”
“I worked really hard,” he says, throwing up his hands.
I sigh, and I think for a second about laying into him, but then I remember his heart. I say, “How are you doing, Dad?”
With this, he warms up a bit, and he closes his eyes. “I don’t want to be done yet. There’s still so much more I want to do.”
If turns out that Dad does not have a heart condition. The doctors measured his valve wrong.
About a year or two after this scare, the phone rings while I’m moving laundry from the washer to the dryer in my laundry room in Los Angeles.
Since I learned Dad would be okay, my writing life has grown. I write about sex a lot, and being bisexual, in particular. I am winning awards and fellowships. I’m not quite sure why, but I like it. I’m taking his wisdom to heart the best way I know how: working very hard. I get the sense my dad doesn’t care for the content of these essays, though I like to think he’s proud of my success. Just a few more big awards, I tell myself, and I’ll have succeeded.
The phone rings. The screen on the phone says Jane, my stepmom’s name. She has been trying to get in touch with me all day, so I answer.
Jane says, “Seth,” and then after a long pause, she says, “I’m about to have to tell you the most difficult thing I’ve ever had to tell you.”
I’m holding a wet sweater. It has giant holes in the armpits — it was $22 from H&M — but I like it so much I’m wearing it whenever I can anyway, doing my best not to lift my arms in public.
“Okay,” I say.
“Your father and I just got back from the doctor.”
Father, I think. This use of the word father, this is a terrible sign. In my family, when there’s bad news, we go formal and scientific — we say father instead of dad, we cite studies instead of crying.
I feel a sense of calm come over me, an overwhelming calm that comes in emergencies, like after 9/11 or when my best friend got in a car wreck or when I learned Dad had the heart condition, a calm so complete that sometimes I find myself wishing something terrible would happen so I can feel it again.
“Your father,” she says, “has been diagnosed with 99% confidence that he has Alzheimer’s disease, though you can’t know for sure until he’s …”
She lets the sentence peter out. It would’ve ended with the word dead. The sweater is on the floor now. I don’t know how it got there. I sit on top of it. The wet from the sweater is soaking through my pants.
“Oh,” I say.
She hands the phone to my dad. I say hello, and he says hello, and then I don’t know how to follow up, so I say, “This is hard.”
And he says, “Ruth Bader Ginsberg called this the disappearing disease when her husband had it.”
So I say, “I didn’t know that.”
And he says, “I don’t want to disappear,” and he hands the phone back to my stepmom.
“There’s a promising medication in Australia that seems to work in mice,” she says. “There’s another interesting study from UCLA…” she keeps going. My dad, my father, is going to be gluten free, or he’s no longer going to eat sugar, or he’s going to go twelve hours between meals, or something. We’re still not quite sure. But the research is there. I spend weeks researching possible solutions. We don’t have to panic. We can stop this in its tracks. We Fischers can fix anything if we work hard enough.
A year passes. Dad is getting worse. His colleagues at work have been telling him that his “quality of thought has been slipping.” The state will soon be taking away his driver’s license. He struggles to decide which shoe to tie first. He can’t remember to finish making the coffee in the middle of making the coffee, and he makes Instant Taster’s Choice. He’s officially retiring from Harvard. They are giving him a big party. No one will say the A word. We are not to say the A word when we speak at his retirement party. His disease is a secret. At Harvard, you need your brain to be working in order to be somebody. My dad doesn’t want to stop being a somebody.
Despite all the borderline miraculous work he did, his corner office and prime parking space are two of his proudest achievements. The university is now taking them back.
We are in his office, looking through his library. His office is a disaster. He was never clean, and this disease made him filthy. I find a first generation iPad he accidentally stole from the Smithsonian. I find student papers from the late eighties, printed out on dot matrix paper. I find dozens and dozens of elaborate gifts from students of his, including books made out of silk.
My dad is standing in the middle of the room like a lost boy.
I look through his books to check the indexes. If he’s cited, we keep it. If he’s not, we give it away. He is cited in more books than he is not. I’m impressed with him, as usual. More than that, I’m frustrated I’ll never figure out how he did it.
My career has taken a nosedive since the diagnosis. I can’t seem to write much of anything, and what I can write is never published. I start editing books and I teach every class I can. These jobs that are next to what I actually want to be doing will suffice. They pay my rent.
My hands get filthy with decades of book dust. I open a red and white paperback, without even bothering to look at the cover. I look for his name. There he is. As per usual. “Fischer, Kurt.”
Then right under his name, I see another name I recognize: Fischer, Seth. I wonder what Seth Fischer works in the world of psychology.
I flip to the cover. The book is called Magic Trees of the Mind: How to Nurture your Child’s Intelligence, Creativity, and Healthy Emotions from Birth to Adolescence by Marian Diamond and Janet Hobson. I stifle a cynical laugh. I turn to the page where my namesake is mentioned, and I find this:
Kurt Fischer, an animated, red-haired academic … methodically observed Fischer’s son, Seth, starting at birth. This disciplined observation revealed a very startling fact that supports the new, more brain-oriented model of child development. One way to measure a baby’s brain growth, they report, is to monitor the size of his head on a weekly basis. Fischer and Rose carefully recorded Seth’s head circumference, starting at birth and noting marked growth spurts between three and four weeks, seven and eight weeks, and ten and eleven weeks that coincided with spurts in other babies from other studies. Then, unexpectedly, Seth caught his first major cold from weeks seventeen to nineteen, and instead of another predicted growth spurt, Fischer found that his son’s head (and presumably the brain inside) failed to grow at all during the illness.
I don’t know what to do with this. This would’ve been in 1979. I take a picture and post it on every social media platform I have. I’m hoping people will tell me how I’m supposed to feel. All I can think is: I want to really know this wild-haired academic, and I never got to. And also, though I know it’s ridiculous, I wonder if that cold is the reason I’m failing at doing what I really want to do.
My friends answer my social media posts with incredulity that any father would do that to his son, and they order me to write about it. I don’t feel incredulous. Well, I feel a little incredulous. But mostly, I’m back in my dad’s office, and I look at my dad standing in the middle of the room, moving from foot to foot, trying to look busy by flipping through pages.
His biggest professional contribution is something called “Dynamic Skill Theory,” or the idea that in human development and education, context matters. Extrapolating from that, if different people learn differently in different contexts, then theoretically, at least, most people can obtain the skills they need if the context is right for them. Maybe most importantly, people need the right kind of support to succeed. He started publishing this theory in 1980, soon after measuring my brain, when the conventional wisdom was that schools didn’t really matter, and when this was a revolutionary thing to publish. When I think about the standardized tests my high school and college students have to take now, I guess it still is.
Dad is just staring at an empty table. I wonder what is going on in his brain as it develops backwards. The truth is that they don’t know. What would happen if I measured his head? I laugh at the thought. I wonder if he felt guilty that I got that cold, if he felt a responsibility for it. I wonder why there isn’t anything we can do to fix him.
I want my dad.
I am not going to get my dad back.
Over the next two years, I go to the doctor no fewer than a dozen times. I’m forgetting things: my keys, where I put my phone, where I put my car, when I’m supposed to go to meetings. I don’t write anymore. Not a word. I’m terrified that I have this thing. That I have the A word. I’m an editor and teacher now. My brain pays my rent, puts food on my table. I’m not even out of my mid-thirties, so people tell me not to worry. I worry. Early onset A word is happening more and more. It could be my turn. It probably is my turn. That would be just my luck.
I go to one doctor to request a scan of my brain. She asks me my family medical history, and I tell her about my dad. As soon as I mention him, something about the way I mention him, she closes her eyes and something shifts in the way she approaches me. I’ve lost her. She isn’t on my side anymore. I know somewhere inside she’s right. I know this is in my head. But I want to be sure. Can’t I just be sure?
She gives me a memory test. My short-term memory is fine. Not great, but fine.
“I scored well on that in sixth grade,” I say. “Should I worry?”
She says these numbers change as we age.
“Wait, does that mean I should worry?” I ask.
“I think this is probably stress,” she says.
I don’t remember a single time in my life that wasn’t stressful in some way. Do people have not-stress? “Aren’t there any other tests I can do?” I ask. “Can’t you scan my brain?”
She sighs again. “I would recommend you eat a Mediterranean diet,” she says. “And maybe try eliminating gluten, if you are really worried.”
I do these things. I have never been more scared.
Another year passes. In the midst of all my doctor appointments, some part of me got it together to send out typo-laden applications to a bunch of writing workshops. They all reject or waitlist me except for the hardest one to get into, which is weird, but whatever. I go. It’s on the east coast, a few hours from my dad’s house.
I fly out early to spend some time with him, and I brace myself. It’s been a few months since I’ve seen him, and seeing an A-word patient every few months is like seeing a toddler every few months. Every time is a different person.
This time, when I walk in the door, he’s in a great mood. His whole face lights up bright red and he gives me one of his trademark excellent hugs. He says my name, which is always a relief. My stepmom asks me to take him to a neurology appointment the next morning because she needs someone to drive him. She will meet us there later.
We leave early, expecting traffic, but for once, the Boston roads have opened up, so I’m alone with him in a hospital Dunkin’ Donuts. I want more than anything to know exactly what to say, but all I can do is talk about coffee.
“Dunkin’s coffee is not actually coffee,” I say, “it’s a different drink entirely. Once I admitted that to myself and asked them to add all the cream and sugar, I learned to like it.”
The thing about the A word is that the patients mirror your emotions. If you feel uncomfortable, they feel uncomfortable. If you cry, they cry. If you get flustered, they get flustered. If you are in a good mood, they are in a good mood. So I try to keep everything light and breezy, but all I want to do is crawl into a ball and go back to sleep.
He smiles vacantly at me. I’m such a snob, I think. I’m telling this to a man who drinks Taster’s Choice. I’m telling this to a man who grew up in a slum. I’m telling this to a man who worked his ass off partially so I could have the opportunities I’ve been doing such a great job of fucking up.
Then I think that this man loves me. Just that morning, my dad followed me downstairs to take a shower and got upset when I wouldn't let him into the bathroom. It wasn’t creepy, my stepmom explained — following is an A-word thing. It’s a compliment. "That means he's attached to you," she said.
“Do you like the coffee?” I ask him, and then I remember that part of this whole A-word thing is also that we’re not supposed to ask unnecessary questions.
He gets a look of panic in his eyes. He doesn’t say anything, but somewhere in there, he’s saying, “I can’t make decisions, Seth. Don’t ask me to state a preference.”
“Sorry,” I say, and I sip my non-coffee.
The silence between us becomes unbearable. I suggest we go upstairs to the waiting room. He follows me, and I walk as slowly as I can, but we get there, and once more, we sit in plastic chairs.
It takes about a half hour, but Jane finally arrives, and I’m relieved to see her. She’s dressed in business attire, a green blouse, suit pants, and makeup. He smiles at her in a way that shows he’s still attracted to her. All the tension goes out of dad when he sees her. She is good with him. She is good for him. This makes me happy.
We go into the neurologist’s office, finally. The neurologist is all business with us but a supernova of warmth to my dad, patting his shoulder, smiling at him, joking with him.
My stepmom, seated on a stool, is already fighting back tears.
“What day is it?” the neurologist asks.
He doesn’t know. My stepmom lets out an audible sigh. She wants to correct him, to give him the right answers. She just wants to save him from all this pain so badly. I do too.
The neurologist shoots my stepmom a look and repositions herself to block his view of her.
“What season is it?”
He shrugs. “Winter?” It is summer.
“What floor are you on?”
“I don’t know,” he says.
I want to leap across the room and say, "That's not his fault! I guided him up here. Why are you picking on him?"
I do not do this.
“What year is it?” the neurologist asks.
Dad shakes his head no; he has no idea. At this point, I’m trying to hide the look of shock on my face. I know it’s bad, but I had no idea it is this bad. I start to feel like tears might come, but I know that A-word patients are mimics, that they take on your emotions, that crying here would be the worst thing I could do.
“Can you spell world backwards for me?” she asks, smiling at him. I can tell he likes her. I get the sense she likes him.
“D-l-r-o-w,” he says. I whistle appreciatively. Positive reinforcement is okay, I assume, and I guess I’m right, because the neurologist smiles at me now, for once. His right answer and her smile have bought me some time. I don’t feel like I’m about to break down.
“I couldn’t do that without a pen and paper,” I say.
The neurologist asks my dad to write a complete sentence down on a sheet of paper. I watch him write in his chicken scratch. I think, "I bet this will be good for my writing." Then, "I'm a terrible person." Then, "What will he write?"
He writes it down, and he shows it to all of us. I read what he writes.
He writes, "Don't stop now."
First, I think: Is that a sentence? The neurologist gives him credit for it. I want to argue with her, though. It's an imperative. It's technically complete, but not classically complete. The subject is implied.
Who is the subject? Was that for me? For him? For both of us?
I almost have to leave the room. I keep it together with deep breathing. The neurologist shoots me another don't fucking lose it now look. She can tell. She's seen enough of these moments. My stepmom is trying to keep it together herself. That poor neurologist, I think. This is what she does all day.
Then I think: My poor dad. Am I humiliating him by being here at all?
"Don’t stop now," he’d written. At this moment, while his wife and son look on, while he can’t answer the most basic questions we’re all supposed to be able to answer. I decide this is him finally giving me an answer. I decide that he’s sending a message to me and to himself and to my stepmom, from some part deep inside him, something that still knows what I need and what he needs and what she needs.
I decide this wisdom is the best wisdom of all.
I don’t stop.
For the next year and a half, I do a lot of homework. I go to the writer’s workshop and nail my pitches to agents. I join the board of a nonprofit dedicated to bisexual rights. I take on no fewer than twelve freelance clients, including a children’s hospital and a publishing house. I become an editor at a literary magazine. I start teaching high school. I go to the Obama White House for a bisexual community meeting right before the election. I take on more and more and more and more, because I won’t fucking stop. Not now.
I try not to pay attention to the fact that all this feels a bit hollow. I try to take care of my dad. This involves semi-frequent one-sided phone calls and helping to manage their finances, as well as the occasional emotional support for Jane and my siblings. I know I should do more, but I’m very busy not stopping.
Two days before Christmas of 2017, I decide to visit again.
I’m once again sitting with my dad. This time, he’s on the couch, and I’m on the rocker. We are watching NCIS, his favorite show.
Back in LA, I now have a cat that looks exactly like Kitty, and ever since, Kitty can’t get enough of me. She’s in my lap now, purring loudly, offering her belly so she can eat my hand when I touch it.
Jane asks if I mind watching Dad for a moment while she goes to the drug store. It is two blocks away. I know that it is dusk, sundowner time, the worst time of day for A-word patient patients. I say yes, that I’ll watch Dad anyway, thinking she’ll be right back.
Special Agent Gibbs, the lead in NCIS, is hot on the trail of some white suburban kids who fell in with ISIS, who watched too many ISIS Facebook feeds, and who have taken a hostage.
When my dad stands up fifteen minutes later and goes into the kitchen, I’m still rapt in Special Agent Gibb’s quest. The kids don’t really know what they want as ransom, and it’s making Gibbs crazy.
When commercials come on, I notice Dad pacing in the kitchen.
He no longer asks for what he wants — he no longer has the words, except for occasionally when he’ll burst out into lucid speech, often about developmental psychology — so we have to play a guessing game, like he’s a toddler. This? No. This? No. This? No. It is very hard to get to a yes.
“Need some food, Dad?” I say.
He shrugs, which usually means no, but sometimes means yes. He looks towards the door. I know what this means. He wants to know where Jane is.
“She’ll be back, don’t worry. She just went to CVS.”
He breathes a deep, petulant sigh, and he walks over to the front door and looks out of it.
I text her. She does not immediately respond.
“Jane?” he asks from the door. He sounds like maybe he’s going to cry.
“She’ll be back soon,” I say.
“No,” he says, “Where?” His face is getting angry red, and he’s breathing quickly, like maybe he might cry.
“She will be back as soon as she can.”
He starts moving his arms up and down like a little kid. “I don’t think so, I don’t think so,” he says.
He heads back to the couch, to Special Agent Gibbs, but they have so many advertisements, and he gets up again, and heads to the door.
“I don’t think so!” he says from the front, where he hasn’t opened the door, but he’s ringing the bell we put on there so we can hear if he walks out the door. He is crying now. Just a little bit, but I definitely hear tears.
“I can’t make her come back,” I say, “but I’m here.”
He walks away. “No,” he says. “I don’t think so.”
He is afraid we’re going to give up on him. He is afraid we’re going to stop on him. I can’t hold it together very well. I text my stepmom again. “Please hurry.”
My stepmom texts back. She’s held up at the drugstore. She’ll be back as soon as she can.
“She’ll be back soon,” I say as calmly as I can muster. “She texted.” I hold up my phone. Now he is trying the door. He wants to go out there to find her. When the door opens, it is blistering cold, and he sighs and closes the door again.
“Why don’t we get you a snack?” I say.
He glares at me. I rattle some pistachios at him, say we can watch some more NCIS. He comes back, slowly. But he is wary. He wants Jane. I want him to have Jane. He takes a handful of pistachios, but I can tell he’s still a second away from fight or flight.
Special Agent Gibbs has somehow caught the homegrown terrorist white kids. They are so sorry, they say, until he calls them on their bullshit, and then we see that they are evil to the core. I think that it’s no wonder the world is stuck in a persistent state of fear if this is what older people are watching.
My dad has tears welling up in his eyes. He leaves the pistachios shells on the couch. It strikes me in that moment that he always loved pistachios, and he always had a bowl for the shells. He can’t get the bowl himself anymore. I should have brought him a bowl.
Dad, I think, has Alzheimer’s disease, and whether I brought him a bowl is not going to change that.
The regret comes at me hard. By not stopping professionally, I had stopped doing everything I could for him. I should’ve spent the last year and a half with him, instead of losing myself in my work. I had read his advice wrong. I had not stopped the wrong thing. There is not enough of him left. I will never get the wisdom he could have given me.
I don’t want to think about it anymore. I want to get on a plane and disappear. I want to stay there forever and become his caretaker. I want to completely change course. I want to change everything, but I know not to, because I sense that changing everything is the same as stopping. And I can’t stop. Not now.
No one ever told me how to choose what not to stop. I want to shake him and ask him, “How are you supposed to know how not to stop?” “What if I stopped doing the wrong thing by accident?” “What if I stopped on you?” But instead, I say, once more, that everything is going to be alright, and that my stepmom will be home soon.
Finally, the front door jingles. Jane is home. He leaps up to her, gives her a big hug. “Where were you?” he asks, some acid in his voice.
“I had to go to the drug store,” she says, and she takes him upstairs to put him to bed.
I sit back down on the couch with Kitty. She’s very eager to have her chin scratched. A calm comes over the house when Dad goes upstairs. I’m here, in Boston, at his house. I haven’t stopped on anyone. I think briefly that this — this right here, this A-word — is the hardest work any of us has ever had to do.