Since my symptoms are so new and transient, I don’t come close to meeting the criteria for dementia. But some of the personality changes I’ve begun to experience during the trip to New Haven are similar to those seen in cases of frontotemporal dementia, which, as its name suggests, affects the frontal and temporal lobes. FTD typically strikes people at a younger age than Alzheimer’s, with 60 percent of cases occurring in people forty-five to sixty-four years old; that is, in middle age. Because the frontal lobe is involved, patients often become disinhibited and lose their judgment, and it is sadly apt that FTD is sometimes called the midlife-crisis disease. Some people become sexually inappropriate; some go on wild shopping sprees, become financially irresponsible, or eat junk food with abandon. They may behave as if their ids are running amok with no superegos to override their impulses and desires. People with FTD typically lack empathy, and also are convinced that they’re doing nothing wrong. This lack of insight is a core criterion for FTD and for many other mental disorders, including schizophrenia—the disease I have spent so much of my life studying.
While I don’t have frontotemporal dementia or schizophrenia, the swelling in my brain is causing me to act like someone with mental illness: I am here in body but not always in mind. The people around me recognize me yet don’t. They are struggling to understand why I could possibly be behaving so strangely. And I am oblivious to their concerns.
The world around me seems more and more peculiar, and my confusion often morphs into anger.
Everything that everyone does is so irritating. More than irritating—infuriating!
What’s the matter with everyone at work? Why can’t they do things the right way? Why is it always up to me to correct their mistakes? Mirek isn’t any better. Everything he does is wrong. And no matter how much I point it out, he keeps screwing things up. It’s unbelievable.
My complaints are relentless. “Why did you put a napkin here and not there? It makes no sense!” I say to Mirek as I’m preparing dinner. Or, “Why are you still sitting? Don’t you see that I need your help right now?”
Each time I snap at him, he gently asks me to calm down. I hate that—it’s so stupid and weak. It just makes me angrier.
Why is Mirek such a wimp? What happened to him?
He frets over my health, always asking me if I need anything, urging me to do the things I enjoy—to go for a run or take a bike ride. It irritates me. More and more, I avoid his eyes. I don’t care how it affects him. I don’t care what he’s thinking or feeling. I don’t care what he is going through at work or anywhere else. I have more important things to focus on.
What will I have for breakfast? Is the table setting complete? And now Mirek has put the forks somewhere that I can’t find them! Why would he do this to me? Where is the salt? I can’t remember what I was planning for dinner. For the life of me, I just cannot recall. It really bothers me. And where is Mirek?
Bothered by my short temper and egotism, my family tiptoes around me. And, out of earshot, they quietly share their concerns. Upstairs in his office, on one occasion that I will learn about much later, Mirek speaks with Kasia on the phone, telling her that I’m being difficult, so difficult that he is really struggling. She can tell that he’s trying hard not to cry.
I’m not the same woman they’ve always known, they agree. I’m an angry, overly critical, selfish version of myself. My characteristics are basically the same, for the most part, but exaggerated. I am an over-the-top caricature of myself.
But my behavior is not so bizarre that it sends up red flags about my health. I’ve always spoken my mind, more so than anyone in the family; they’re used to that. And my concern about the chemicals in the pesticides, for example, wasn’t unreasonable, they admit; chemicals can be dangerous, after all, so the fact I ripped into the pest-control guy wasn’t completely out of line.
So my awful behavior continues unchecked. And for my part, I remain unaware that anything is amiss. With a brain that’s not functioning properly, I am singularly focused on my own needs and entirely blind to the signals that something is seriously wrong with me.
There is one thing I care about more than anything else: getting that fourth and final infusion. I’m going to finish this treatment even if I have to drive myself to the hospital. Even if I have to walk the twenty miles to get there, crawl into the infusion unit, and stick the IV into my own vein. I’ll do it. I’ll do whatever it takes.
6
Lost
At the office, I work long hours just as I did before my diagnosis. I act like nothing is different. I review scientific articles and manage my large staff, making detailed plans for the institute’s ever-expanding brain bank. We continue collecting postmortem brains and setting up scientific collaborations with colleagues across the country at a faster and faster pace to support increased demand as more people in the scientific community learn about our brain bank. I assure my supervisors that I’m back to normal, and I send e-mails with cheery subject lines like I am feeling good!
And I am feeling good! I’m staying optimistic about my prospect of surviving this deadly cancer. While I’m no longer as strong as I was before I began immunotherapy, I’m still capable of powering through a normal workday—and, when the occasion calls for it, summoning great bursts of energy for a project or a meeting. I believe I’m doing very well, apart from the tumors in my brain.
But of course, I’m not.
Increasingly, I struggle with some tasks, and I’m having trouble focusing on what I’m doing. Reading is especially confusing. I begin delegating some of my work to my employees and sending e-mails in all caps—the electronic version of shouting, something I’ve never done before. On one occasion, instead of proofreading an article for a prominent academic journal myself, as I’ve always done, I immediately forward it via e-mail to a postdoc with a blunt note: please do this. Another time, I e-mail the organizers of a professional conference whom I’d asked to make hotel reservations for me:
Thanks. These are super special cicrumstances for me, i am batting a deadly disease. As a federal employee, i have to wait for travel approval and can only use gov rate fee h
For hotel. I tried to ask for accommodation a few weeks ago biy to mo avail. Please help! Thanks. Barbarag
I see nothing amiss with this e-mail, and no one says anything to me about it.
Nor do I recognize that I’m becoming more and more uncaring about what other people think, and more disinhibited. At some point in June, for instance, I stop pulling down the blinds in the bathroom window at home when I’m showering. I just stop caring about who might see me. It’s just too much work—and why would I block a nice view into the park?
It’s around this time, in June, that I go for a run through the neighborhood without my prosthetic breast and with hair dye dripping all over me, surprising Mirek with my bizarre appearance when I return home. I see nothing off about the way I look.
I don’t realize what’s happening at the time, but this lack of inhibition and judgment are common in people with frontal-lobe problems due to dementia, stroke, injury, swelling in the brain, or any number of issues. The frontal lobes give us the capacity to predict the consequences of our behavior and avoid actions with expected adverse reactions. Each of us makes thousands of judgment calls every day, in most cases without even having to think about them. When a person suddenly breaks normal social rules, as I’m doing now, it’s a strong indication that the frontal lobe is not working properly.
Without a functional frontal lobe, my brain is like a horse galloping dangerously after the rider has lost the reins. More and more, I just do what I want when I want to do it. I don’t notice anything awry—and if I do, I don’t care.
One hot and humid day in mid-June, I head to work in the early morning to avoid driving in heavy traffic because driving has become increasingly confusing. By late afternoon, I’m exhausted. I’ve worked all day without a break, trying to make up for lost hours spent at doctors’ appointments and hooke
d up to the IV to receive my immunotherapy drugs.
I look outside and see heavy, dark clouds gathering over the high-rises of the NIMH campus. It’s going to pour soon. I’m irritated by the weather and so, so tired.
I have to leave. I have to leave right now.
I bolt from my office to the multilevel garage where I always park and head to the same spot I always use. “My” space is usually open when I get to work because I always arrive early, often before the garage has any cars at all. The garage I use is not the one closest to the building where I work, but I like to take a little walk at the start and then again at the end of my day.
For many years, I had limited need for these ugly, concrete constructions to park my car. Whenever the weather allowed, I biked to work, about twenty miles each way on a peaceful, tree-lined trail along the Potomac River. But no more. Since my brain surgery and the immunotherapy, I don’t have the same energy and stamina, so I drive to work, although I hate it. I feel reduced to a lesser version of myself. But at least I have a lovely walk to relax and unwind after a day in the office.
After ten minutes, I reach the garage. But I don’t see my silver Toyota RAV4 in my regular spot.
That’s weird. I don’t remember having to park somewhere new today. I was in early, like I always am—wasn’t I?
I walk up one aisle and down another. The garage is full, but my Toyota is nowhere to be found. I search each floor, trudging back and forth, scanning the rows of cars. I’m concerned, then very worried.
Someone stole my car!
Or maybe I just—I don’t know. Maybe I parked somewhere new and don’t recall it?
I reach into my purse and pull out the car key. I press the alarm button and hear a beep. It’s coming from far off. I walk toward the sound, pressing the button from time to time to make another beep, then another.
What is happening? It makes no sense at all.
I retrace my steps, go back to where I started, and press the button on my key again. I hear the beep once more. But when I walk toward the sound, I can’t hear it anymore. I try the same thing over and over: press, beep, nothing. I can’t locate my car.
I’m confused and lost. I don’t understand what is going on. I don’t understand the world. It’s playing tricks on me, strange and cruel tricks.
I see a woman walking in my direction. I hesitate for a moment before approaching her. How embarrassing to admit that I’m having trouble finding my car! But I have no other option. I’m tired of walking around in this dark space. I want to go home.
“Can you help me find my car?” I ask. “I don’t know where I parked.”
She looks surprised but says she will help. She takes my key, presses the button, and we hear the beep. “It must be halfway up on the higher floor,” she says. “Look up there, through the gap between the floors.”
There, in the opening she’s pointing to, I see my silver Toyota. It seems to be on the ramp between the first and second floors. I have no idea how it got there. I grab my keys from her and run up the ramp to my car. It’s flashing its lights, as if winking its eyes at me to say, Gotcha!
I’m relieved but confused.
Why is it parked here? I don’t remember pulling into this spot. Is it possible someone moved it? Why would they do that?
My confusion only grows when I climb into the Toyota. I’ve been driving this car for three years, but when I get into it and try to fasten my seat belt, I can’t seem to find it. I extend my hand as I always do to pull down the strap but there’s no seat belt where I expect it to be. Instead, my outstretched hand dangles outside the door, hitting nothing but air.
I try again. The same thing happens. There is nothing to grab, nothing to hold on to. No seat belt, no anything.
Why am I having so much trouble with everything I try to do?
The world around me feels odd and awkward, with cars the most deceitful part of all. I no longer understand how to do the simplest things connected to them. I look around and still can’t find the seat belt. Instead, I notice that my door is wide open.
It shouldn’t be open, I realize. But I can’t recall what that has to do with the missing seat belt. I sit for a while and then, irritated, I slam the door with a bang.
With that noise, my world returns to normal. Like magic. I slide my right hand across the inside of the closed door, and it easily locates the seat belt. I reach for it; it’s in its normal position, right there, hanging from the fastener on the inside of the car. I pull it toward me and across my chest, slide the buckle into its locking mechanism, and click.
Finally! It works. I’m ready to go.
I start the engine and try to back out. But I get stuck. Something is holding the car in place. I can’t move. I push harder on the gas pedal and hear a ghastly screeching sound of metal scraping something hard. I hit the brakes and look to my left. Somehow, I’m partially wedged under a small truck parked next to me. My wheel or some part of my car seems to be stuck under the truck but I am not sure how or why it got there.
I try to drive forward—the screeching intensifies. I put my car in reverse—the same thing happens. In desperation, I press really hard on the gas pedal, ignoring the terrifying noise of smashing and screeching and breaking objects, and finally free myself from the trap. As I pull away, I see that my car’s left side is dented. But I don’t check the damage to the truck. I don’t care. I simply drive away.
I head toward the exit. It’s clearly visible from a distance so I drive in that direction. Although the exit driveway is narrow and slightly curved, it’s never given me any trouble. I’ve passed easily through it hundreds and hundreds of times. When I reach it today, though, it seems much narrower, almost unrecognizable. I drive slowly, trying to squeeze through the constricted exit. But I cannot fit.
What are they doing with these driveways? Changing everything, constant construction on this stupid campus! Why did they alter the exit?
I hear loud scratching and a bang as I run over a high curb.
The parking attendant runs out of his booth. “Lady, what are you doing?” he shouts.
“What do you think?” I mutter, increasingly irritated. “I’m just trying to get out of here, to leave this ridiculous garage and go home!”
Standing in front of my car, he points with his hands, directing my moves so I can free my wheels, as one of them is stuck high up on the curb. Finally, I pull loose. I drive off angrily.
I have the uneasy feeling that the world is plotting against me. As if to confirm that, as I head home, the sky opens and it begins to pour.
At this time of year in northern Virginia, the rains are often intense, almost tropical in their suddenness. Visibility during such weather is minimal; the world hides behind a curtain of water that is gray, foggy, and shapeless. Although the sun won’t set for another several hours, it’s dark and I see nothing but rain. I can’t even make out the outline of the hood of my car. The houses, the highway railing, even the other cars, all seem to wash off in the rain. I’m driving blind.
Home is somewhere out there, a hidden oasis in the woods facing a quiet street. It’s my cradle of safety. I need to get there quickly. Then I’ll be fine. But it’s nearly twenty miles away. I turn onto a busy four-lane road. Cars whiz by me at unusually high speeds.
Where are they going so dangerously fast?
I creep along to the correct exit and merge onto the main highway, the Beltway that snakes through the suburbs of Maryland and Virginia. From there it should be simple. I’ve taken this route countless times. But today it looks different.
Why can’t I figure out where I am? Is it the rain that makes it so difficult?
I need the exit onto Little River Turnpike West. But I don’t see it.
Have I already taken the exit? Why can’t I remember?
Am I lost? I’m not sure. I don’t really have any idea where I am. But I do see that I’m no longer on the highway. I keep driving. Instead of the familiar streets and houses of my neighborhood, I’
m going past a huge shopping mall. Gray buildings, expansive parking lots, entrances to dark garages.
What am I doing here? How did I get into this gloomy shopping mall, someplace I’ve never seen before?
I feel as if I’ve skipped through time or leaped into another reality. It’s odd. But I’m not worried much, and I’m not afraid. It’s like I’m a character in a movie mysteriously transported in a rainstorm to a place I didn’t intend to go. Nothing is what it seems. Nothing works as it should.
I want to get home but don’t know what to do. I stop by the side of the road, then pull into a vast parking lot. I fumble with my cell phone. I know that I have an app that will guide me home but I cannot recall which one it is. I stare at the many icons on the screen but none of them are familiar. I randomly press the button on this one and that, but nothing’s helping. After a long while I see the Waze icon and press it, and when it speaks its directions, I again begin to drive.
Eventually I pass by a large construction site with a building that extends along an entire block. It looks shiny and new and seems like it’s almost complete. A huge sign announces that a Giant supermarket is soon to open.
A Giant! How wonderful! I wish they would build a new Giant near us!
Oh! Wait, look—it is in our neighborhood! I’m back in our neigh-borhood! This Giant will be ours!
My happiness quickly deflates. Yes, this will be our new neighborhood grocery store. But will it be mine? Will I live to see it open?
Now I’m in my driveway. I have no idea how I got here.
The Neuroscientist Who Lost Her Mind Page 10