The Neuroscientist Who Lost Her Mind

by Barbara K. Lipska

  A brain tumor would be too cruel and too deadly, so it must be something else. Perhaps the side effect of an antibiotic I’m taking for an infection. I quickly Google doxycycline, and sure enough, vision problems and hallucinations are a side effect—very rare, but documented nonetheless.

  Clearly, I tell myself, that’s the problem.

  Greatly relieved, I head to the conference room where I’m meeting with a small group of visiting scientists. Once everyone has arrived, we begin to discuss our findings on how genes operate in the prefrontal cortex of patients with schizophrenia.

  But I can’t focus on the presentation. Whenever I look at the projection screen or at my colleagues’ faces, parts are absent, like a surrealist painting or a puzzle with a missing piece. Although the missing section is less than a quarter of my field of vision on just one side, the void still terrifies me.

  It feels like there’s a hole in my mind. With a terrible gravity, it pulls me back toward the one explanation I don’t want to consider:

  Brain tumor.

  I desperately try to pretend I’m participating in the meeting. But the idea has become stuck in my head: Brain tumor. Brain tumor. Brain tumor.

  After an hour of torture, I abruptly leave the conference room and run back to my office. I sit at my desk for a while, leaning my forehead against its cool surface as I try to process this bizarre situation. But although I turn it over and over, inspecting it from every possible angle, this symptom has only a single likely explanation—the one that frightens me most.

  I have to get out of here. I have to go home. I run to the parking garage, find my car, and drive fast to Annandale, my heart racing the entire way.

  At home, my skis and helmet are ready, and my suitcases are packed. I throw a last glance at my notes and piles of conference materials, making sure I have everything I need. Early tomorrow, I fly to Big Sky, Montana, to the annual Winter Conference on Brain Research. As the elected president of the conference this year, I’ve been key in organizing the meeting, which will draw five hundred neuroscientists from all over the world. I’m also giving the welcoming address to the group, and I have carefully prepared my speech.

  I’ve attended this meeting every year for the past twenty-four years. With its balance of work and outdoor fun, it’s my favorite conference. Early each morning, we attend sessions on topics related to brain function, mental illness, and drug addiction. We break for several hours to hit the ski slopes, chatting with our colleagues about our research as we ride the chairlifts up the mountain. Midafternoon, we reconvene for professional sessions and often work together late into the night.

  I’m particularly excited this year because my son, Witek, will be at the conference. He and I will work together, then go skiing with Cheyenne. The forecast is excellent—snow for the next five days—and I can’t wait to hit the trails. I can almost smell the frosty air and feel the bite of freezing wind on my face as I speed down the slopes, zigzagging through the trees and kicking up blinding clouds of snow.

  I love skiing even more than science. It gives me the feeling of weightlessness, an extraordinary lightness of being, a sense of freedom as I fly in and out of control. It’s challenging and risky. Navigating the tight trees on a fast run or jumping off the rocks into the white nothingness requires instantaneous decision-making and trust in one’s agile body, sharp vision, and strong muscles. And the beauty of the surroundings! Skyscraping mountains over and around me, glittering snow under my feet—the sweet, sweet feeling of paradise.

  But this problem with my eyesight weighs heavily on me. I still can’t see anything that wanders into the lower-right quadrant of my field of vision.

  I try to squelch the panic that is growing inside of me. I just can’t accept that this weird phenomenon is serious enough to keep me from Montana. It simply must not be the one thing I’ve suspected from the moment my hand disappeared this morning, the absolute worst possibility. I won’t even let the word tumor emerge from my mouth.

  But on some barely conscious level, I know my situation may be dangerous. I have to act, and quickly. I call our family doctor, Eugene Shmorhun, and ask for a last-minute appointment. It’s late afternoon and near the end of his office hours, but he agrees to see me immediately. I don’t tell Mirek or anyone else where I’m going, not wanting to alarm them—and not wanting to admit the terrible possibility even to myself.

  Dr. Shmorhun has been our family doctor for almost twenty-six years, since we first moved here from Poland. When we became his patients, he was young, tall, and handsome, just starting his private practice. Over the decades we’ve all aged together, witnessing one another’s skin sag a little and bodies grow rounder. We’ve joked about our worsening hearing and eyesight. Like us, Dr. Shmorhun likes to run and cycle, and we often discuss with him the results of our latest races. We feel a close connection with him.

  Over the years, Dr. Shmorhun has saved our family from a variety of mini-disasters, like my herniated disc and the clot in my husband’s subclavian vein that led to the removal of two of his ribs. He was with us when I had my first bout with cancer, a battle that cost me my left breast. Then, in late 2011, he found a melanoma on the skin behind my ear that my dermatologist had missed. My first husband died of melanoma, so I was terrified by the diagnosis, but Dr. Shmorhun saw us through that storm too. Since then, I’ve allowed myself to become optimistic about my health, and my family has followed my lead. Until today, I was sure that the worst was over. After a painful operation and radiation treatment that beat the melanoma into remission, I was warned by the oncologists that there was a 30 percent chance it would return. But I shrugged off their words. No way, I thought. It’s never coming back.

  But as I sit before Dr. Shmorhun and describe my vision problem, my confidence wavers.

  “It is the eye, it must be the eye,” I tell him. The problem can’t be with my brain.

  As he examines me, I start to speak faster. “I’m taking doxycycline, which can cause this side effect,” I blurt. “I Googled it.”

  Hurry up, I think, I have no time to waste! I’m leaving tomorrow morning for my wonderful trip. Let’s get this over with, and fast.

  Dr. Shmorhun continues to check my vision, my eyes, my neurological responses. I notice his serious expression, his unsmiling face. His usual composure is cracking.

  “Why worry?” I reassure him. “Things like this can happen.”

  “I don’t think it’s your eye,” he says.

  I freeze. I know that if it’s not the eye, it’s the brain.

  “You can’t see anything on your lower-right quadrant with both eyes open, nor can you see that area with either your left or right eye alone,” he says. “But your eyes see perfectly well anywhere else. This suggests that your eyes and optic nerves are probably fine but the brain regions that process visual information from your lower right field are experiencing some trouble. I want you to see an ophthalmologist immediately.” He leaves the room to call her.

  I am terrified.

  We need our brains, as well as our eyes, in order to see. The eyes pick up visual information in the world, and the optic nerves send it to the occipital lobe, or visual cortex—the part of the brain where it is processed. If there’s a problem in your left eye, you won’t be able to see on the left. But if there’s a problem in an area of the visual cortex in your brain, neither eye will be able to see a particular visual field—which is the very problem I’m having.

  I call Mirek and Kasia and tell them I’m at Dr. Shmorhun’s office because I can’t see things in the lower-right side of my visual field. Kasia is clearly concerned but I insist it’s not a big deal. I say I’ll call again after I talk to the ophthalmologist.

  The ophthalmologist, Dr. Julie F. Leigh, is right across the street. She checks my vision, dilates my pupils, shines a strong bluish light deep into my eyes. Her pretty young face is close to mine across the slit lamp, her glittering earrings almost touching my ears and cheeks. I like how she smells, a delic
ate fragrance of perfume. She finds nothing wrong with my optic nerves or retinas, no cataracts. But when she leans back, her smile has disappeared and her eyes are sad.

  “I am afraid it’s in your brain,” she says. “It must be something in your occipital cortex. We need to do more tests.”

  I run back across the street. Dr. Shmorhun’s office is now closed but he’s waiting for me in the darkened reception area along with Mirek, who’s just arrived.

  Mirek’s quiet presence always calms me. Though he was stricken with polio at eighteen months of age and still walks with a significant limp—the polio vaccine wasn’t available in Poland until the late 1950s, a few years after it came out in the United States—he is an excellent cyclist with strong muscles in his arms and in his dominant leg. He’s an intellectual, unfailingly kind and warm, with a wry but gentle sense of humor. I have a strong personality, loud and laughing and stubborn about my opinions, but Mirek loves me just as I am and is always supportive of whatever I want to do.

  I look to him for comfort now, even as I stand defiantly apart from him and Dr. Shmorhun in the dark waiting area. My brave exterior is beginning to crumble.

  “We have to do an MRI of your brain as soon as possible,” Dr. Shmorhun says.

  “But I’m leaving tomorrow morning! I have plane tickets!” I respond. “I’m the conference president, I have to go!” The words pour out in a terrified stream. “I have to go, I have to ski, there will be no conference without me, I am essential!” I repeat the same points over and over, like a child desperately trying to convince her parents to let her stay up past her bedtime.

  Dr. Shmorhun is usually subdued but today he is very firm. “I can’t let you go anywhere before we figure this out,” he says. “It could be dangerous to travel. We need to do an MRI immediately. You need to find any place that can take you tomorrow morning.” Mirek sides with him.

  I continue to argue for an hour—I’m not one to give up easily on what I want. But they won’t budge, and I finally give in.

  Okay, I tell myself. I will do the MRI and delay my trip by one day, just to make them happy.

  Mirek and I head home in separate cars. I follow him closely because my vision loss makes it very difficult to drive. It’s dark and I have a hard time navigating the winding, wintry roads. Try as I might, I can’t stay in the middle of the lane.

  When we get home, I call the airline and postpone my flight by a day. I also call Witek to say he should still go to Big Sky but I’ll be late joining him. Tomorrow, January 23, is his birthday, and I feel terrible I won’t be there. I call a few friends who are headed to the conference. “You wouldn’t believe what’s happened!” I say in a cheery voice. “I cannot see well and have to have it checked out before I join you. I’ll just be delayed by one day.” I try not to let my fear enter my voice.

  Early the next morning, we go to a nearby imaging center for the MRI. I insist that I do the driving because I always drive and I want us both to feel that everything is normal. But I drive very poorly, weaving across the lanes. “I’m fine!” I snap, nerves frayed, when Mirek asks to take the wheel. “Leave me alone!”

  Somehow, we arrive at the MRI center without getting into an accident. The front-desk person checks me in. Only then does it really hit me that I am being scanned for a possible tumor in my brain.

  I am nauseated with fear as I prepare for the MRI, which is going to create a very detailed image of my brain and perhaps reveal some horrifying things. A nurse inserts an intravenous line in my arm, which delivers into my bloodstream a contrast liquid that is absorbed by brain tissue. The MRI will use a computerized system to produce pictures (or scans) of my brain that doctors will examine for tumors, strokes, nerve damage, and other abnormalities that x-rays, CT scans, and ultrasound machines cannot reliably detect.

  A technician slides me into the tight tube of the MRI machine and turns on the noisy magnet. I lie motionless for an hour before the scan is complete and I am finally free. When we head home to wait for the results, Mirek drives. I am completely exhausted, drained by fear and the stress of the scanning procedure and what it might reveal.

  We are home by midmorning; my flight leaves this afternoon. I pack and repack, adding this and that: an extra pair of warm gloves and socks, the sunscreen that I almost forgot. I am hoping the doctor will call soon with the only possible news—that it’s not a tumor.

  But the impossible happens.

  At around 11:00 a.m., the phone rings. I pick it up and sit down on a stool as Mirek runs to join me in the kitchen.

  “I am so sorry,” Dr. Shmorhun says. “I don’t know how to even tell you this.” His voice breaks; he pauses. “The scan found three tumors in your brain,” he finally continues. “You have to go to the ER right away. One tumor is bleeding, which strongly suggests it might be melanoma. Melanoma tumors have a tendency to bleed. It can be very dangerous.”

  Watching my face, Mirek knows our world has taken a tragic turn.

  I think about the weather.

  It is a bright, sunny day here in the Washington suburbs. Snowstorms are in the forecast for later today and tomorrow. And it’s going to snow in Montana.

  I try to stand up from the kitchen stool but can’t move.

  I am going to die.

  For a fleeting moment, that thought floods through me. But I kick it away with all my might and spring into action. My response to emergencies of any sort is to throw myself into a rational, organized plan and grasp whatever control I can.

  I hang up with Dr. Shmorhun and immediately telephone my son. “Witek, I cannot go to Big Sky. I have tumors in my brain,” I say. “I am so sorry. It is your birthday, and I am not going to make it.” He is, of course, shocked, and I feel like a bad mother for putting my family through so much pain again. I telephone Kasia in New Haven and my sister, Maria, in Boston. Both are stunned. I call my colleagues at the conference and suggest they ask a past president to substitute for me and deliver my speech, which I will e-mail to them. They, too, are dumbstruck.

  For my sake and my family’s, I am determined to get the best care possible, and I begin to research my options. Staying focused on a plan of attack keeps me from obsessing over the tumors that, at this moment, are flourishing in my brain.

  I call Dr. Claudine Isaacs, my breast cancer oncologist at Georgetown University Hospital. “A horrible thing has happened. I have tumors in my brain,” I say. “Maybe it is breast cancer metastases. But one tumor is bleeding, so my family doctor thinks it is melanoma. Where should I go?”

  When she speaks, it is clear she is shaken. She tells me to go immediately to the ER at Georgetown and directs me to see Dr. Michael B. Atkins, a melanoma oncologist who she says is phenomenal. She says she will meet me there.

  From the corner of the hallway, poised for my trip, my skis stare at me—sleek, beautiful Rossignols that I bought last year. They respond to the slightest movement of my feet, my toes—even my mind, it seems. With them I fly through the snow, fluid and graceful. Now I’m headed to the hospital, and they will have to stay behind.

  It’s Friday afternoon before a snowstorm, not a good time to enter an emergency room. My blood pressure is sky-high, perhaps from anxiety, perhaps from a bleeding brain tumor. The nurses give me steroids to prevent brain swelling caused by tissue irritation from the bleeding tumor. I lie for hours on a cot behind a flimsy curtain. All around Mirek and me echo the sounds of rushing, crying, screaming; the sounds of distress and endangered human lives. It’s devastating to be back in this world just three years after undergoing surgery for skin cancer.

  Doctors come and go, all asking the same questions, and I tell them the same thing: “I cannot see on the right lower side. My MRI shows brain tumors, and one is bleeding. I’ve had breast cancer and melanoma.”

  It turns out that Dr. Atkins is away today but Dr. Isaacs comes in and offers words of support. She leaves. More doctors cycle through the room. A neurosurgeon swings through and advises against brain surgery in favor
of radiation, which will be safer than cutting into my brain. A radiation oncologist visits and gives the same recommendation. No decisions are made. We wait for hours.

  Maria calls again and again from Boston, where she is a physicist and chief of therapy in the radiation oncology department at Brigham and Women’s Hospital.

  “Come to the Brigham,” she insists. “The doctors here are the best. I talked to Dr. Aizer, a radiation oncologist. He says that surgery should be done first and then radiation.”

  How can I possibly go? I’m lying here in the ER with a bleeding tumor in my head. Despite all my years of studying the brain, I’m not a neurologist or any other kind of medical doctor. I know close to nothing about what could happen to me. Will the tumor burst open and flood my brain with blood? Wouldn’t that kill me? I’d better not move. But Maria wants me to see the doctors she knows and trusts. What should I do?

  Shortly after 8:00 p.m., the flimsy curtains part and Witek and Cheyenne appear. They canceled their trip to Montana and drove down from Pittsburgh. Oh, what a joy it is to see them! Despite my fear and despair, I’m ecstatic that they’re here. Soon after, Kasia arrives. She took the Acela train from New Haven and made it just before the storm. Mirek and I are so happy to have everyone together, to breathe the smell of their bodies and touch their faces, kiss their cheeks. Kasia is very tired; a few hours earlier, she herself was seeing patients. She lies down with me on the cot and we snuggle closely like we did when she was my little baby. Witek and Cheyenne fetch sushi from the hospital cafeteria, and we share a feast on my bed amid the IV lines and crumpled sheets. We’re surrounded by the frightening sounds of the ER, but we’re together in this ordeal, my family and I.

  At midnight, they leave. I remain in the ER listening to beeping and more beeping, to the tragic noises of people in desperate need of help. Nurses peek in from time to time, and I plead with them to transfer me to a quieter place. At three in the morning, they move me to a room in the ER that I share with an older woman who is in serious pain and surrounded by a large family.