The Neuroscientist Who Lost Her Mind

by Barbara K. Lipska

  Of course I find things irritating, I tell myself. I’m tired of being sick. I’m tired of my rash, my swollen arm. I’m tired of everything. And my headache continues to come and go.

  When the date finally arrives for the physical therapy appointment for my lymphedema, I don’t feel like going. Although my arm is still uncomfortable, I loathe the idea of another hospital, another treatment. These medical visits are relentless reminders that I’m ill. And this visit is especially irksome now, when I’m trying to feel hopeful. My melanoma will retreat in the face of the magnificent, novel treatment I’m receiving. I know it.

  But I’m a woman of my word, so rather than cancel at the last minute, I keep the appointment and go. It’s a short drive along back roads to the hospital from my home; afterward, I’ll head directly to work.

  I know our local hospital well. I’ve been here many times for the various minor surgeries that Mirek, Witek, and I have endured over the past thirty years. But today, as I pull into the entrance to the parking complex, I wonder if I’m in the right place.

  Everything looks totally unfamiliar. I don’t remember the parking area having this layout.

  Did they change it?

  I drive into the large, multilevel garage. There are no spaces on the first floor so I continue skyward. I drive up, up, looping for what seems like forever, in circle upon circle onto higher and higher levels—but still, I find no empty parking spots.

  I emerge at the very top of the garage, where I’m momentarily dazzled by the sunshine. “In this heat, the car will be unbearable when I return,” I say to myself as I park.

  I take the stairs down, down, down to the first floor of the garage. But once I’m there, I can’t locate the hospital entrance.

  Did this change too?

  I wander about for a minute and finally discover the front door, but once inside, I find myself in a confusing maze of long corridors leading in all directions, lined with doors opening to who knows where.

  I’m lost again. Have they changed everything in this place?

  Irritation wells inside me. “Why did I have to come here? This is so stupid,” I grumble. “Where’s the office? Why don’t they make it easier for patients to find their way around?”

  I ask several people for directions but no matter how much they try to help, I cannot find the physical therapy department.

  I can’t believe they’re doing this to me! I’m sick—how could they put me through this?

  Somehow, I finally stumble upon the front desk of the PT department. I am seething.

  After checking in, I take a seat in the waiting area—but any relief I feel at having found the office quickly dissolves. On the couch across from me, a little boy is coughing and crying. He nags his dad to take him out of the room.

  I stare at the child with annoyance. Why on earth would they let a sick kid into this room? I’m very ill. I can’t afford to be around someone like him!

  As he continues to cry, my loathing increases.

  Isn’t physical therapy for adults? Sick children should have a separate clinic. They should be isolated! He’s going to infect me!

  I hate the little boy. I hate his father. I hate this place.

  This torment continues for a long while until, at last, a woman in hospital scrubs enters the waiting room and calls my name. “I’m Theresa,” she says with a smile. “It’s nice to meet you.”

  Such a strained, dishonest smile. So insincere. What is she up to? I’d better keep a close eye on her.

  She leads me into an examination room and offers me a seat, then begins to inspect my arm.

  “The lymphedema is really advanced,” she says. “You’ve waited way too long. The swelling may be permanent. I’m going to explain how we should treat it so that it doesn’t get worse, but you have to follow my instructions very carefully. If you don’t, it could be dangerous to your health. Your arm will be prone to infections.”

  Why is she droning on and on? This is such a dreary, boring, awful place.

  I begin to wonder what we’ll have for dinner tonight. Did Mirek get the salmon from the grocery store? I’ll bet he forgot. He’s always forgetting everything I ask him to do. How could he—

  Her voice momentarily interrupts my thoughts. “Let me show you how to bandage the arm,” she says. “You’ll wear this bandage for the next month or two. It’s very important—do you understand?”

  What time is it? I need to get home. Especially if Mirek forgot to shop. I need to get dinner ready.

  She eyes me. “You really need to do this,” she says firmly.

  I pretend to listen.

  “After you’re done with the bandage, you’ll be using a compression sleeve like this,” she says, holding out a long, flesh-colored tube designed to span the length of an arm from knuckles to armpit. “You will have to wear another sleeve at night to keep your arm compressed and prevent lymph fluid from pooling.”

  I glance at the sleeve. It’s ugly and silly.

  “Are you kidding?” I scoff. “Do you really expect me to wear that ridiculous thing? It looks like a medieval torture device.”

  She doesn’t respond.

  Who does she think she is, sitting there so smugly? “I’m a professional woman with great responsibilities,” I continue. “How on earth would I look wearing these ludicrous bandages and sleeves? They may be good enough for someone sitting at home all day but not for me. I work in a serious place. I supervise a large department. You must have something better than that.”

  She keeps watching me, silent.

  I know better than she does. “Why don’t you just massage my arm and let’s be done with it?” I propose.

  “Massage will only work in combination with these compression sleeves,” she says. “This is a serious condition. It needs immediate attention and ongoing treatment.”

  I don’t like her expression. She’s arrogant. I knew it the minute I saw that fake smile. “I am not going to wear anything on my arm,” I say. “Forget it.”

  “You need a series of regular visits,” she insists. “And you have to stop arguing with me.”

  “A series of visits?” I start to laugh. “I have no time for such bullshit!”

  I stand up and give her a withering look, then wheel around and stomp out the door, through the waiting room, and into the hallway. “What kind of nonsense was that?” I say aloud as I leave.

  What a waste of time this was! I’m never coming back. Appalling! They have absolutely no idea what they’re doing.

  I find the stairs in the parking garage and march directly to the highest floor, all the way into the sun. I get into my car and accelerate down and out of the parking garage in a long, spiraling swoop. Finally, I can head to work. I’m determined to put this absurdity behind me and get on with my day.

  By this time, the highway is no longer congested by rush-hour traffic.

  Of course, there are no cars on the highway anymore—everyone’s at work! I would be, too, if I hadn’t spent well over an hour in that stupid hospital.

  It’s an easy drive on the Beltway to the sprawling NIMH campus in Bethesda. This is the largest biomedical institution in the world; almost twenty-one thousand federal employees work in dozens of buildings situated on hundreds of acres of a former private estate.

  Even though I’m exhausted by that pointless physical therapy appointment, I put in a long day at work, supervising all aspects of the brain bank. I’m bombarded with questions as soon as I arrive. One of the technicians asks about a potential brain and whether we should accept it; as soon as he leaves, another technician comes in with a similar query. After she leaves, I respond to a dozen e-mails from researchers around the country eager to receive some of our brain samples, and then I review the most recent data about the tissue samples we are storing.

  Each time I get up and head into the lab to check on my employees, I pass by a bowl of chocolates on my assistant’s desk. She always has candy out, and I always avoid it. I don’t like to eat unhe
althily, especially sweets. But yesterday, the chocolates looked so good that I ate them throughout the day. I couldn’t stop. Today, it’s the same; every time I walk by, I grab another one and pop it in my mouth. Sweets have never tasted so irresistible.

  Early one evening a few days after the physical therapy appointment, I’m in the kitchen, chopping vegetables and slicing meat to make a stir-fry for our dinner. I’m sipping a glass of wine, trying to relax, when I hear a knock on our front door. Mirek is upstairs working in his office so I answer it.

  A man about thirty years old with a broad smile is standing on the front step.

  “Hello, Mrs. Lipska!” he says brightly.

  How weird—he acts like he knows me! I’ve never seen this man before. What does he want? Something is very wrong—I can sense it. Something dangerous.

  Without waiting for my invitation, he steps forward as if to enter our house.

  I block the door.

  “I’m John,” he says. “From pest control.” He holds out his hand. I don’t shake it.

  “Who?” I demand.

  “John. We provide pest-control services for you, remember?”

  He’s definitely up to something.

  “We’ve been providing termite inspection service to you for over twenty years,” he says, speaking more slowly now.

  That change in his voice—he knows I’m onto him.

  “This is our scheduled visit,” he continues. “May I do the inspection?”

  “The inspection? Oh, really?” I make sure my sarcasm is clear. “Why are you here today, exactly?”

  He gives me a puzzled look.

  “What,” I ask again, “do you think you’re going to do?”

  He starts to talk about termites. That reminds me of something urgent.

  “Ants!” I shout. “They’re everywhere!” I dash into the kitchen. “Come! Look here and here!”

  I point at the windowsill, where a few tiny ants are marching along the wall to the back door that opens onto the outside deck. “Ants! See? And you absolutely have to see the stain on the wall in the basement. It might be mold.” My words pour out in a torrent. “Go look, quickly!”

  He rushes downstairs to the basement. I’m relieved to be rid of him but a few minutes later he returns, talking about something or other. The only word I hear is chemicals.

  He’s going to spray some chemicals.

  “Chemicals!” I jump as if someone’s poked me. “What do you mean, chemicals?”

  He looks scared.

  I knew it! I’ve caught him.

  “Our chemicals are very effective against ants and fungus,” he says, but his speech is halting and uncertain.

  Aha! His little game is up.

  “We have another spray, for the termites.” He pauses and then adds, “Don’t worry. They’re all very safe.”

  “Safe? Chemicals?” I shout. “Chemicals are poison! Don’t you know that? How can you say that they are safe?”

  “Well, customer safety is key to our—”

  “Then tell me, what’s in these chemicals?” I demand. “What compounds do you use?”

  He stares at me blankly.

  I have him cornered! “You have no idea, do you? Safe? Ha! I’m a chemist! You can’t fool me. I have young grandsons! Are you trying to poison them? To poison us all? Is that your plan? All chemicals are toxic. I forbid you to use any chemicals in this house.”

  Somebody approaches behind me, and I realize that Mirek has come down the stairs.

  “Hello, how are you?” Mirek says to the young man.

  Why is Mirek greeting him so cordially? This stranger is trying to poison us!

  Mirek turns to me. “Don’t worry, he won’t do anything today,” he says soothingly. “He’ll just do the inspection. Here, I’ll sign the papers.” Mirek turns to some documents the young man has placed on the kitchen island.

  “No way!” I shout, inserting myself between him and the island. I lean in toward the young man and yell, “You are fired!”

  His face is frozen in disbelief. Before Mirek can say anything, I continue. “Not only are you not working for us anymore, but I’m going to call your manager and tell him that you are totally incompetent. How can you not know the chemical composition of your own spray!”

  Unbelievable! What an idiot!

  I turn and storm away, leaving Mirek and the stranger alone in the kitchen.

  These kinds of changes in normal behavior often signal that something serious is occurring inside a person’s brain. My emotional overreactions—anger, suspicion, impatience—suggest that my frontal lobe is undergoing catastrophic changes. But these warning signs are lost on me. As an expert on mental illness, I, more than most people, should be able to see that I’m acting strangely. But I can’t. Although I don’t know it yet, my six tumors and the swelling around them are shutting down the frontal cortex, the part of the brain that allows for self-reflection. Paradoxically, I need my frontal cortex in order to understand that mine has gone missing.

  This inability to recognize my own impairment is often observed in people with mental disorders. Known as anosognosia, or lack of insight, it’s a feature of many neurological and psychiatric conditions. Little is known about which brain regions are responsible for lack of insight, but some investigators suggest that it may be related to dysfunctions in the midline of the brain, which separates the right and left hemispheres. Damage to the right hemisphere may also be involved.

  In schizophrenia and bipolar disorder, a lack of insight into one’s condition is thought to be a manifestation of the illness itself rather than denial or a coping mechanism, as it may initially seem to be. About 50 percent of people with schizophrenia and 40 percent with bipolar disorder cannot understand that they are sick, so they have no real awareness of their condition and won’t accept their diagnoses. If they experience hallucinations or delusions, they don’t see them as a sign that something is wrong with their brains; even the most dramatic symptoms, such as hearing voices or believing that they are God, are indistinguishable from reality. Because people with schizophrenia and bipolar disorder who suffer from a lack of insight don’t believe they are ill, they’re often very resistant to psychiatric treatment. They may not take prescribed medications or participate in behavioral therapies. And there’s no cure, at present, for this kind of lack of insight.

  Just like someone with schizophrenia, I don’t think that there’s something seriously wrong with me. I think I’m absolutely fine mentally. If anything, I believe I’m just stressed or tired—worn out by the poor design of a medical facility, by the inexcusable wailing of a child in a hospital waiting room, by the appearance of a strange, pushy man at my front door. I do not connect these dots or deduce that the problem is in my head rather than someplace beyond it. I have no reason to think that my reactions to these incidents might be related to my tumors or cancer treatment, nor does anyone around me—at this point, I am not getting any MRIs, which would reveal what is happening inside my brain.

  And so, as my confusion grows, my brain fills in the gaps between what’s in my head and what’s happening around me with conspiracy theories. I become increasingly suspicious of my family and my colleagues at work and increasingly dissatisfied by everyone’s performance of even simple tasks. I’m certain that people, especially the members of my family, are plotting against me.

  Kasia doesn’t really like me anymore. I don’t think Mirek does either. Why are they talking about me? I can tell they’re hiding things from me. But what? What are they hiding?

  Feelings of suspicion—sometimes rising to the level of paranoia—can be a symptom of many types of mental illness, including Alzheimer’s disease. Alzheimer’s patients may accuse their romantic partners of cheating on them or their caretakers of stealing property or trying to harm or even kill them. While neuroscientists don’t really understand the networks or parts of the brain related to paranoia, in some cases this condition is attributed to temporal lobe damage.

&nbs
p; And while the turmoil in my brain may be responsible for my behavioral overreactions, it’s true that my feelings are not completely irrational. I have good reason to be suspicious; after all, my worried family is talking about the way I’m acting. To their dismay, all of my least likable characteristics—my need for organization, my insistence on doing things my way—are growing more exaggerated as the days go by. I’m becoming the worst version of myself: selfish and unconcerned about other people’s feelings. I’ve lost empathy, the trait that was always so strong in me. Whereas once I listened patiently to Kasia on the phone as she described her workday or challenges with the kids, I now cut her off. I am losing my emotional connection to the people closest to me, especially my caring husband.

  Why are some people highly empathic while others are profoundly selfish? Like so much about human behavior, we don’t know for sure. Empathy, like other complex behaviors, is not situated in one isolated part of the brain but regulated by a wide network of connections among many brain regions. An intricate mix of genetic and environmental factors are probably at work: how each brain is structured and internally connected, how a person is brought up, and where and in what culture he or she is raised. Each individual’s personality is a result of complex interactions among countless factors that influence the brain’s function.

  However, some scientists think that some brain regions may be more involved in empathy than others, and these include the frontal cortex, the temporal lobe, and the insula, a cortical region located deep inside the brain between the frontal and temporal lobes. If that’s true, it may explain why loss of empathy is often a core symptom of a kind of dementia called frontotemporal dementia (FTD), which is caused by a progressive and ultimately fatal neurodegenerative disease.

  Dementia is a broad term that refers to certain mental declines, such as loss of memory and social and cognitive abilities, that are serious enough to interfere with daily life and that have lasted at least twelve months. The most common cause of dementia is Alzheimer’s disease, which accounts for 60 to 80 percent of all dementia cases and is characterized by lapses in memory, language, or executive functioning. Certain other neurodegenerative diseases also cause dementia, and so can stroke, traumatic brain injury, and infections such as syphilis and HIV. The World Health Organization estimates that roughly forty-seven million people worldwide suffer from dementia of some kind, with nearly ten million new cases diagnosed each year.