The Neuroscientist Who Lost Her Mind

by Barbara K. Lipska

  “This is a lot of excitement for no reason,” I tell her. “I am fine! I am fine!”

  By now it’s almost night, and Kasia climbs onto the bed with me just as she did in January, as tired and upset now as she was then. It feels good to have her so close but I still don’t understand the urgency. I don’t know how to persuade her and Mirek and Dr. Atkins that there’s really no reason to fret so much.

  A few hours later, Mirek and Kasia go home, telling me they’ll return in the morning. “Of course!” I say cheerily. “I’ll be fine. I don’t really need anything. Don’t worry and don’t hurry—have a nice bike ride in the morning.” I don’t have a toothbrush with me or even a change of clothes, but I’m feeling upbeat and well. The headache is gone. Hours later, I send them a selfie that shows me smiling in my hospital garb in bed.

  The selfie I sent to my husband and daughter from the Georgetown hospital.

  But I don’t have a restful night. Nights in hospitals are never good—so much commotion and noise, bright lights and beeping machines. I’m awakened at dawn by a nurse checking my vitals and changing the bags on the IV pole. I’m angry to be roused from sleep, and hungry—so, so hungry.

  “When is breakfast?” I ask.

  “Soon,” she replies.

  “But I’m hungry!” I respond. I’m hungry. I want to eat. It’s my only thought.

  At seven o’clock, my breakfast still has not arrived. Nor is it there at eight or nine. I’m fuming. When the nurse reappears, I pounce.

  “How is it possible that breakfast hasn’t been served yet?” I scold. “What a terrible hospital this is. My insurance is paying hundreds of dollars a day for me to be here. Appalling! Breakfast itself will probably cost a hundred dollars—and it’s late!”

  I repeat my complaint to everyone who comes into my room. Ten o’clock arrives, and still no breakfast. And no Kasia or Mirek either. When they finally telephone, I let them know I’m furious that they’re not here yet with some food. After we hang up, I walk into the nurses’ station, dragging my IV pole, and demand my meal. The nurse explains that because I’m a new patient, it takes longer than usual to order my breakfast. I storm off, stop a doctor in the hallway, and insist he hear my tirade: “No breakfast! How pitiful, how irresponsible. My insurance is paying for it!”

  No one can escape me, not the nurses, not other patients. They all need to hear my breakfast story, and I make sure they do.

  Finally, at ten thirty a.m., the hospital staff brings my breakfast, just as Mirek and Kasia arrive carrying oatmeal with fruit and nuts, my favorite morning meal. First I devour the hospital food, then the treats from my family. But I remain unhappy. I repeat to Kasia and Mirek the story of the tardy breakfast, and retell it, and tell it again. Every nurse and doctor who comes into the room is greeted with the story of this injustice. They try to ask me about my headache and other medical issues. But I want to tell them that my food was late. And I’m still hungry! Can’t they bring me more?

  I see that my daughter is cross. She tells me to stop. “Mom, don’t you understand that you are seriously ill?” she says, her eyes welling up. “You have new tumors in your brain. Why are you stuck on unimportant things like breakfast and food when your life is in danger?”

  I can’t believe what I’m hearing. “Breakfast, unimportant?” I retort. “Of course it’s important! It’s important for me.”

  Kasia leaves the room. I can hear her just outside the door, talking to a doctor who has come to examine me. When she reenters, she’s crying. Her emotional reaction puzzles me.

  “Why do you want to talk about tumors and sad things like that?” I tell her. “What’s the point? What can I do about it? You’re overreacting.”

  “Mom, you’re very sick,” she responds. “Don’t you get it?”

  “You’re panicking. Calm down!” Then I add, “The whole world is against me!”

  “I don’t recognize you! You’re not the mother I’ve known all my life!” She continues sobbing.

  I stare into the distance silently.

  Nobody loves me anymore. I simply can’t believe they don’t agree with me about this breakfast debacle. Breakfast at ten thirty? For what we’re paying?

  At the hospital, I continue to polish off everything on my meal trays while asking my family to bring more food from home. I find the hospital crackers especially alluring. I gobble them up and look for more. Everything is delicious.

  Midafternoon the next day, Sunday, June 21, they release me from the hospital. I’m going to continue on high doses of oral steroids, and I have an appointment with Dr. Atkins in a few days to hear details about my condition and discuss options. Until then, we’re just waiting. Nobody in the family mentions the possibility of further treatment. Death hovers among us like a ghost.

  When we get home, I’m still very hungry, and I insist on making dinner. But I’m baffled as I try to prepare the meal. I can’t find the pots and pans or anything I need. When Mirek offers to take over, I tell him to leave me alone. Kasia also tries to help me but I criticize her efforts so much that she, too, retreats. We three eat dinner in near silence.

  Over the next few days, I find it harder and harder to prepare our meals. I have no idea how to adjust the measurements in recipes I use for just Mirek and me in order to make enough for Kasia, too. I also forget the proportions of ingredients in even the simplest recipes: how much water in relation to pasta, how much salt to add for that much water. And I completely lose the ability to plan; I can’t figure out which dishes need to be cooked first in order to time the meal appropriately or even which ingredients to add to which recipe and when. I can’t even bake bread anymore, a ritual that I’ve been performing every week for years, using a starter yeast from Poland. No matter how much I try, I can’t remember how to do it.

  Yet as frustrated as I am in the moment, I do not reflect on what it all might mean. It’s as if I don’t remember that just weeks before, I was good at these things. I make no connection between the serious problems in my brain and the fact that I can’t cook my favorite dishes.

  Even as I struggle to function in the kitchen, my obsession with food continues. I will gain ten pounds between the middle of June and the beginning of July. And it won’t bother me at all. When I emerged from brain surgery in January, I was very thin; I weighed 118 pounds, the thinnest I’d been in adulthood. But soon I’ll soar to 138 pounds, more than I would normally think of carrying on my five-foot-six-inch frame. And I don’t care. Steroids often cause people to gain weight, but that’s only part of the problem. I simply cannot stop myself from eating. It’s not about being hungry, it’s just that these treats look so good that I’m going to eat them! Why not?

  Worried about the health consequences of so much sugar, Kasia gently suggests that I might want to try taming my ravenous appetite. An endocrinologist, she’s particularly concerned because I’m on steroids—steroids combined with too much sugar can cause hyperglycemia.

  “Mom, please,” Kasia says. “You don’t want to be eating all of the ice cream, do you?”

  “Leave me alone,” I retort. “You can’t tell me what to eat. It’s my business, not yours.”

  None of us see it at the time, but my obsession with eating is a classic sign of frontal-lobe problems, which in my case are compounded by steroids that by themselves increase appetite. People with frontotemporal dementia often gain significant amounts of weight very quickly, since they have no inhibitor on their drive to eat. When the frontal cortex is operating as it should, people have the ability to weigh the pros and cons of fulfilling their desires. But when that function is silenced or gone, they just do what they want with zero concern about the consequences.

  I love sweets so I’m going to eat them—period!

  On Wednesday, June 24, Kasia, Mirek, and I return to Dr. Atkins’s office to learn what’s next for me. I’m curious to hear what he has to say. The steroids are giving me so much energy and I feel so much better that I know I’m on the mend, new tumo
rs or not.

  I smile at the receptionist as we check in. But Kasia and Mirek aren’t in good moods. They sit solemnly in the waiting room until Dr. Atkins’s assistant comes to get us.

  “Hello!” I say to her brightly. “Very nice to see you again!”

  She gives me a sad, fleeting smile as she leads us to the examination room.

  When Dr. Atkins enters, his face is grave. He asks us to take a seat. Three of his nurses, Kellie, Bridget, and Dorothy, stand near him, looking heartbroken.

  “Good afternoon!” I say cheerfully, trying to lighten the mood. “How bad can this news be?”

  “As you know,” Dr. Atkins says, “there are new tumors in your brain—”

  “We’ll simply have to deal with this,” I interject. “I’ve had new tumors before. They’ll eventually shrivel and go away, believe me.”

  Bridget, the nurse closest to the door, is failing in her efforts not to cry. She turns her face from us and wipes tears from her cheeks.

  “Really! It’s fine!” I assure them. “I’m telling you—”

  “There seem to be at least eighteen tumors in your brain,” Dr. Atkins says.

  Kasia gasps.

  “As you know, you had three brain tumors when you entered the trial,” Dr. Atkins says. “About fifteen new tumors have emerged throughout your brain since the last MRI.”

  “Eighteen?” Kasia says, her voice breaking. Mirek tenses beside me but says nothing.

  “Oh, I don’t think that’s the case,” I say. “What you’re seeing is something else, inflammation perhaps, or some—”

  Dr. Atkins interrupts and offers to show us my scans in his office next door. Kasia goes out with him but I don’t follow them, and Mirek stays with me. When they return, Kasia’s eyes are glistening.

  The scans show a scattering of small but distinct black spots in my brain, Dr. Atkins tells us—over eighteen little shapes the size of raisins. The largest tumors are in my frontal and parietal lobes, he says, but they also lurk in the temporal and occipital lobes, and in the basal ganglia, a group of brain structures in the base of the brain that help coordinate movement. Later, Kasia will tell me that on the scans, my brain looked like a lump of raisin-bread dough.

  The largest tumor, Dr. Atkins says, is in my frontal lobe. It’s the size of an almond.

  “No wonder you have been acting so unlike yourself,” Kasia says quietly.

  “Really, Kasia—I haven’t been acting that different!” I say.

  The brain scan, done on June 19, in which Dr. Atkins discovered new tumors and extensive swelling. The white areas show swelling; the tumors are circular blobs. The clearest of these, in the upper half of the image, sits squarely in my frontal cortex.

  Dr. Atkins nods to Kasia and continues. “And the scans show a number of fuzzy, whitish areas, which means that a large part of your brain is very swollen.”

  “Mum, I love you,” Kasia says in Polish.

  “But these steroids will stop the swelling! I’m already feeling better!” I say, my smile broadening.

  I look to Mirek, who is staring at me. I look at the nurses, all of whom are tearing up again.

  Why are they all so pessimistic? They’re overreacting. This doom-and-gloom is so unnecessary.

  “I’m sorry the immunotherapy didn’t work,” Dr. Atkins says once more. “I was so hopeful that it would.”

  No one else speaks. A heaviness pervades the room. But I will not give up.

  “Well, okay, what’s next?” I ask. “What do we do?”

  “We’ll do radiation therapy of the tumors,” he says. “Our radiation oncologist, Dr. Sean Collins, will contact you shortly.”

  But we all know radiation is no cure.

  “And then?” I ask. “What if that doesn’t work?”

  Dr. Atkins hesitates.

  “Please, just tell me,” I say. “What comes next for me?”

  I feel detached from my question, like a scientist asking about a specimen in a jar, as if what we’re discussing has absolutely nothing to do with my own mortality.

  “As the swelling increases and places more pressure on your brain, you will likely fall into a coma,” Dr. Atkins says.

  A coma? A coma doesn’t scare me. It sounds comforting, like sleep.

  “And then?” I ask.

  “And then—you will eventually die,” he says quietly.

  “Okay,” I say. “In the meantime, what should I do? How should I prepare?” I ask this as matter-of-factly as if I’m seeking advice on weatherproofing the patio.

  He seems unsure how to respond. Finally, he says, “It’s time to get ready for the worst. You should get your affairs in order.”

  Everyone else in the room is choking back tears.

  I don’t feel like crying at all.

  “Okay.” I nod. “I like a plan of action. I will get my affairs in order.” Then I immediately realize that I don’t need to, actually—I straightened out my affairs months ago, when I got the brain cancer diagnosis. The fact that I’m fully prepared gives me a renewed sense of calm and satisfaction.

  Everyone else looks devastated.

  They’re all so upset. But I’m fine. They’ll see, I’m fine.

  We don’t speak another word about death. On the car ride home, Kasia, Mirek, and I don’t talk much at all.

  I sit in the passenger seat, going over in my mind what I’ve read in the scientific literature about immunotherapy. I’m convinced that this swelling in my brain, these new tumors, are a temporary stage in what will end up being a successful treatment. I recall what the research describes about some cases—the tumors swell, then they shrink and disappear. My ability to remember what I’ve read about my treatment isn’t failing at all, and it’s keeping me optimistic.

  From my long experience studying schizophrenia, I know that brain problems lead to poor judgment and an inability to recognize one’s own mental deficits. But at this moment, all my years of professional expertise aren’t helping me see things as they really are: I’m losing my mind—and my life.

  Several days later, on Sunday, June 28, Kasia and I stand in the local Home Depot.

  Blue. Orange. Pink. Red. White.

  Impatiens of every color are arrayed before us under the awning in the garden section.

  “Mom, we’ve been here fifteen minutes,” Kasia says. “Just pick some.”

  I cannot make up my mind. How many do we need? What colors do I want? I like coral but none of the choices are close to that hue as far as I can tell. Is this coral? I’m not sure. Maybe. But these plants don’t look fresh. Kind of wilted. Okay, then maybe not coral after all. Maybe red.

  Kasia sighs in frustration.

  I can’t decide. I give up. After half an hour of closely inspecting flowers, I settle on something purplish, or reddish—I’m not sure. We get in my car and Kasia drives us to an Asian restaurant in a nearby strip mall for a special treat: sushi takeout for Mirek’s birthday.

  Forty-five minutes after we left Home Depot, I’m sitting alone at the counter in the restaurant. All around me, people rush about speaking loudly in languages I don’t understand. It’s lunch hour, a busy time for this casual place. It’s filled with people from all over the world, particularly Korea, the country of origin of the most recent wave of immigrants to these northern Virginia suburbs. For some reason, right now I find the commotion entertaining.

  It’s a pleasant distraction, because I’m stuck. I’m trying to think about something, but I’m really struggling. It’s hot outside, and hot and stuffy inside the restaurant. The air is filled with exotic aromas—kimchi and steaming plates of noodle soups, marinated meats such as bulgogi grilled right on the tables around me, garlic, ginger, and soy sauces. Such a far cry from our bland Polish cuisine of pie-rogis and cabbage and meats stewed for hours with onions and wild mushrooms until they resemble a brownish, mushy pulp. Our family mostly did away with those foods years ago. In honor of our Polish tradition, we eat them during the holidays, when we savor them for t
he nostalgia they bring.

  Mirek chose sushi for his birthday dinner; it’s his favorite. I’d almost forgotten that tomorrow, June 29, is his special day. When I called my eighty-seven-year-old mother in Poland this morning for our weekly talk, she’d asked, “Is Mirek’s birthday tomorrow?” I couldn’t remember. I knew this time of year was important in our family because we celebrate two birthdays, Mirek’s and Ryszard’s, my brother-in-law. But whose birthday was coming up? I didn’t know. “I think so,” I’d answered vaguely.

  To be sure, I had to check with Kasia. “Is tomorrow Ryszard’s birthday? Or Mirek’s? I can’t remember.”

  “Tomorrow is Mirek’s birthday,” she’d said. “Ryszard’s was a few days ago.”

  I should have been surprised that I couldn’t remember the birthday of the man to whom I’ve been married for almost thirty years, a man I love with all my heart. For years, his birthday has also been the code I’ve used to unlock my cell phone. But I’m not easily surprised nowadays. There are lots of things I can’t remember. Numbers, in particular, escape me, and dates are difficult too.

  Since I’m going in for radiation tomorrow, Kasia and I decided to celebrate Mirek’s birthday a day early. And now, as I sit here in the restaurant, I keep staring straight ahead. The waitresses are curious as to what I’m doing, I can tell. With kind smiles, they ask if I need anything more, if they can help. I thank them but shake my head. The sushi chef across the counter from me, a tall, handsome man, works on a sushi roll, cutting and chopping colorful ingredients, rolling sticky rice wrapped in seaweed with his bare hands, squeezing fancy sauces on top. As he dips his fingers in this and that container, he glances at me with a shy smile.