It's an unusually warm morning in the spring of 2015, and I'm running in my suburban neighborhood of Virginia. The red-purple dye floods my face and neck, spreads across my shirt and stains my chest.
I am a creature of routine. I run every morning But this morning it started differently. After pouring my usual glass of water, I went to the bathroom and looked in the mirror.
My roots show I thought. I need to dye my hair. Now!
I got some Whole Foods henna that I love and that gives my hair a funny purple tinge. I mixed it in a cup, then I squirted it on my scalp and spread it over my head. I put a plastic bag over my skull and tied it with a small knot on the side to hold it in place.
Now I've been running for hours, and I have no idea where I am. I do not recognize the streets or the houses, even though I have lived here for 20 years. I want to get home, but I can not find my house. So I just keep going, covered in blood.
Somehow, I finally find my two-story Colonial. Tired and sweaty, I take off my shoes and socks, which are completely soaked. On my way up, I see myself in a mirror. My head is covered in sweat mixed with hair coloring, the plastic bag stuck on top like a strange swimming cap. Stripes of purple dye, long ago dried to black, crusts have formed in small rivulets in my neck and arms and all over my shirt.
Nothing seems unusual to me.
In his home office, my husband, Mirek, is on his computer with his back to the door. When he hears me enter the room, he says: "You've been out a long time. Good race?"
Then he turns to me with a smile, and freezes.
"What happened?", Exclaims.
"What do you mean?" I say. "It was a long race."
"Has anyone seen you like this?" It seems shaken.
"Why would I care if someone saw me? What are you talking about?"
"Wash it," he says. "Please".
"Calm down, Mirek, what are you talking about?"
What's wrong with him? Why is he acting so strange?
Mirek's behavior should be a red flag, a clue that something is terribly wrong. But a moment later, the unpleasant thought simply escapes me through the cracks in my mind and goes away.
I'm a neuroscientist. As director of the Human Brain Collection Core at the NIH National Institute of Mental Health, I administered a brain library that for various reasons did not work the way it should. The brains that saw hallucinations, heard mysterious voices, were shaken by wild mood swings or were deeply depressed. Brains that have been compiled, cataloged and stored here for the past 30 years.
The first thing we do every morning is that the technicians of our brain bank phone the offices of the local forensic doctors and ask: "Do you have a brain for us today?" Once you have compiled your list of candidates, they come to me, and together we reduce it. Do we want this, an overdose of drugs? Or this, an alcoholic? If there is any chance that a brain is right for us, I usually say yes. Our job is to open the organs and study their internal functioning in an attempt to understand mental illness. The brains we seek are rare and precious, and we do not have enough.
I have worked with brains for more than 30 years, starting in rats. As a neuroscientist and molecular biologist, I have spent my entire career, first in my native Poland and then in Bethesda, trying to solve the mysteries of schizophrenia, a devastating disease in which it can be difficult to distinguish between what is real and what is do not. My most significant discovery involved the frontal cortex of the brain as an essential site for the development of schizophrenia. It became known as the Lipska model. It has been described in hundreds of scientific articles, replicated in laboratories around the world and applied to other areas of research, including genetics and cognition. It has been helpful in the design of new medicines.
All this recognition is what led me to be named director of the brain bank in 2013. At that point, everything seemed to be going well. My two children grew up and got married, raising children of their own. I was still cycling 20 miles to my office. Every night, during dinner, Mirek and I sat on our raised back porch in Annandale as if we were on the deck of a ship sailing through a green sea of forest and grass. We would delight in the many birds that surround us-woodpeckers, hummingbirds, little kings-and we would be extremely happy with life.
But very soon I would begin to wonder if the rats of my first experiments were demanding their revenge against me. The same brain structure that had sabotaged thousands of rodents would start to work poorly, spectacularly, in my own brain, thanks not to schizophrenia, but to a series of tumors. Cancer, it turns out, can make you lose your head. And even though I, of all people were equipped to recognize that, I had no idea what was happening when I lost mine.
One morning, several months before that fateful trotting trip, I sat at my desk and started eating a plate of oatmeal. I arrived to turn on my computer. My stomach tightened. My right hand is gone.
I could not see it. Had disappeared.
I moved my hand to the left.
There it is! Went back!
But when I slide it back to the lower right quadrant of the keyboard, it disappeared again. It was like a strange magic trick, hypnotic, terrifying and totally inexplicable, except. . . .
I immediately tried to push the thought away from my mind.
Overcome Stage 3 breast cancer in 2009 and Stage 1B melanoma in 2012. But both cancers often metastasize to the brain. He knew that a tumor in the occipital lobe, the area that controls vision, was the most likely explanation for this strange loss of vision. I also knew that metastases are scary news.
I searched Google to see if the problem could be a side effect of a medication I was taking. Okay, yes, it's a possibility. But. . . It could also be a brain tumor.
I was supposed to leave the next day for a ski trip and a work conference in Montana, but at a barely conscious level, I knew that my situation was dangerous. I went to see our family doctor. "I do not think it's your eye," he said. He sent me to the ophthalmologist across the street. She did not find anything wrong with my optic nerve or retinas, nor cataracts. But when he lay back, his eyes were sad. "I'm afraid it's in your brain," he said. "We have to do more tests."
Mirek was waiting for me at our doctor's office. He is an intellectual, unfailingly kind and warm, with an ironic but kind sense of humor. I have a strong personality, strong, smiling and stubborn with my opinions, but Mirek loves me anyway. I asked for comfort while our doctor said: "We have to do an MRI of your brain as soon as possible."
The next day, the scanner found three tumors. One was bleeding.
My melanoma returned and my prognosis was terrible. When skin cancer spreads to places such as the lungs, liver or brain, it is almost always terminal.
Meanwhile, I was losing control of reality, oblivious.
My family was well equipped to help me understand what to do. My son, Witek, is a neuroscientist; my daughter, Kasia, is a doctor; my sister, Maria, is a physicist who works in radiation oncology; and Mirek is a brilliant, logical and sensible mathematician. We decided that I was going to undergo stereotactic radiation surgery at Brigham and Women's Hospital in Boston, where they would shoot my tumors with precise and high-energy radiation beams in the hope that the tumors would wither in the nothing. The problem was that directed radiation is not a permanent solution. If new tumors continued to appear, my brain would soon be plagued with deadly injuries. I needed to do something dramatic, find something cutting-edge to save my life. Without him, he would be dead in a matter of months.
It so happened that a clinical trial of immunotherapy was about to be started at the Lombardi Comprehensive Cancer Center at Georgetown University Hospital under the direction of a highly regarded oncologist, Michael Atkins. As part of the treatment, every three weeks a combination of two monoclonal antibody drugs, called checkpoint inhibitors, would be simultaneously infused into the veins to stimulate the immune system. There was a place in the test for me. But while chemicals would alter my T cells and point to cancer, something else would start to happen in my behavior.
I received my first infusion in April 2015. Some time after the second, my body turned against me. My immune system was put on high alert and began to attack not only the tumors in my brain but also the healthy tissues of my entire body. My skin bothered me more. From my scalp to my feet, I was covered in a red itchy skin rash. It was miserable, but quite standard in immunotherapy side effects.
I decided to stop thinking about things with a trip to New Haven to see my daughter and her family. The train rumbled slowly through Maryland and New Jersey. Then, in the middle of nowhere, he stopped. After a moment, the lights and the air conditioning went out. I tried to be patient and relax, but my discomfort increased as the delay grew. Finally, after at least half an hour, the driver announced that a tree had fallen on the tracks. We were waiting for maintenance.
It ended up taking seven hours to get to New Haven instead of the usual five. When I arrived in Kasia, my grandchildren jumped on me and Kasia kissed me. She wanted to feel his warmth, to let her know that he missed her and that he was happy to be with her. But that is not what I said.
"Amtrak sucks!" Those were the first words of my mouth.
She looked a little shocked.
I continued, complaining about the train, begging for her sympathy as she implored me with her eyes to let him go. "Amtrak sucks!" I said it again. And again. For the next two days, I could not stop talking about my train trip. I mentioned it with Kasia and her husband, Jake, and their friends. Amtrak sucks! The chorus circulated in my mind like a toy train that runs along a closed track. And it was not just the railroad.
I was irritated if our lunch was even five minutes later than Kasia promised. I could not stand how strong the boys were. I found everything that my family was upset, and I told them. On the second afternoon of my visit, my eight-year-old grandson, Sebastian, came running, laughing loudly, and tripped over me. It annoyed me. "Shut up!" I said. "Just enough!"
It seemed as if I was about to cry. "You're so bad!" He said.
"Oh, come on!", I replied. "You can not be so sensitive! Can not you criticize?"
It may have been obvious to them that he was acting unusual, but he could not see it. Nor could I see the confusion and the suffering that was causing it. Upstairs, in the guest room, I was in my own world, obsessed with their poor treatment of me and the great incompetence of the American railroad system.
When June arrived, I settled into my new routine: a never-ending parade of doctors' appointments even while continuing to work full-time. In the office, I found the minor deficiencies of my employees very irritating. But instead of letting these things fall apart, as I normally would, I began to criticize them frequently.
Of course I find things irritating, I said to myself. I'm tired of being sick. I'm tired of my rash. I'm tired of all.
The day of a physiotherapy appointment, I did not feel like going. He detested the idea of another hospital, another treatment. But I am a woman of my word, so instead of canceling at the last minute, I went.
I know our local hospital well. But that day, when I entered the parking lot, I asked myself if I was in the right place. Everything seemed totally unknown. I did not remember the design.
Had they changed it?
Inside, the hospital also looked different. I asked several people for instructions, but no matter how much they tried to help, I could not find the PT department. When I finally did, it was boiling.
I sat in the waiting room, only to find myself facing a little boy who was coughing and crying. Why would they let a sick child into this room? I'm very sick. I can not be near someone like him!
While I was still crying, my hatred increased.
It's going to infect me!
I hated the child. He hated his father. I hated this place.
My torment continued for a long time until, finally, a woman with bushes entered the waiting room and called me by my name.
A smile so forced and dishonest, I thought. What are you up to? I'd better watch her closely.
Her name was Theresa. He told me that he had waited too long to see her about lymphedema, a condition that affected my arm.
"You need a series of regular visits," he insisted. "And you have to stop arguing with me"
"A series of visits?" I started laughing "I do not have time for such nonsense ."
I stood up and gave him a withering look, then turned and stomped out the door into the hall. "What kind of nonsense was that?" I said out loud as I left.
At first it was difficult to pinpoint changes in my behavior because they had appeared slowly. The attention of my family, as expected, was related to cancer. Besides, suddenly I had not become someone else. On the contrary, some of my normal features and behaviors had become exaggerated and distorted, as if I had become a caricature of myself. He had always been very active, but now he was running frantically. I did not have time for anything, not even for the things I really enjoyed, like talking to my children and my sister on the phone. I would cut them in the middle of the sentence, I would go somewhere to do something of great importance, although I could not say exactly what I said.
I became more uninhibited. I stopped throwing the blinds in the bathroom window at home when I showered. It was too much work, and why would it block a nice view of the park?
My family started walking on tiptoe around me. Out of earshot, they would share their concerns. It was not the same woman they had always known, they agreed. But my actions had not yet become so strange as to trigger alarms. So while I was losing my understanding of reality, oblivious to the tumors that were ravaging my brain, the terrible behavior caused by the same thing continued without control.
A hot and humid day in June, I went to work in the early morning. By late afternoon, I was exhausted. I looked outside and saw dark clouds gathering over the NIMH campus. It was going to rain.
I ran to the multilevel garage, where I always parked and went to the place I always use. But I did not see my RAV4.
That's strange. I do not remember having to park in a new place today.
I walked through the aisles, my Toyota was not found.
Someone stole my car!
Or maybe I just … I do not know. Maybe I parked somewhere new and I do not remember?
I looked for the key in my bag. I pressed the alarm button and heard a beep. It came from far away. I walked towards the sound, pressed the button from time to time to make another beep, then another.
What's happening? It does not make any sense.
I retraced my steps and tried the same thing again and again: press, sound, nothing.
I saw a woman walking in my direction. "Can you help me find my car?" I asked.
She seemed surprised, but said she would try. She took my key and pressed the button, and we heard the beep. "It must be halfway on the top floor," he said. "Look up, through the gap between the floors."
There, in the opening I was pointing to, I saw my Toyota on the ramp. But my confusion only grew when I went up. I had driven this car for three years, but when I tried to fasten my seatbelt, it seemed I could not find it. Instead, my outstretched hand hung outside the door, hitting nothing but air.
Why am I having so much trouble with everything I try to do?
I looked around and noticed that my door was wide open. That was weird. But I could not remember what that had to do with the lost seatbelt. I sat for a while and then, annoyed, I slammed the door shut. With that noise, my world returned to normal. Like magic. I slipped my right hand inside the closed door and easily located the seatbelt.
I started the engine and tried to back up. But suddenly I was stuck. Something was holding the car in its place. I pushed harder on the accelerator pedal and heard a hideous screech of metal scraping something hard. I squeezed the brakes and looked to my left. Somehow, it was partially wedged under a small truck parked next to me.
My grandson looked at me like I was about to cry. "You're so bad!" He said.
I tried to drive forward, the screeching intensified. I put the car in reverse, and the same thing happened. In desperation, I really pressed hard on the accelerator. There was a terrifying noise of crushing, squeaking and breaking objects, but I ignored everything and finally freed myself from the trap.
When I walked away, I saw that the left side of my car was dented. Was the truck damaged? I did not care. I just walked away.
Although the driveway was narrow and slightly curved, I had never had any problems. It had happened easily hundreds of times. When I arrived that day, however, it seemed much closer, almost unrecognizable. I drove slowly, trying to pass through him. But I could not fit.
What are you doing with these tickets? Changing everything, constant construction on this stupid campus! Why did they alter the exit?
I heard loud scratches and an explosion when I ran down a high curb.
The parking attendant ran out of his position. "Madam, what are you doing?" He shouted.
"What do you think?" I muttered, increasingly irritated. "I'm trying to get out of here!"
By mid-June, he had completed immunotherapy and was excited. I was sure nothing was happening.
This was not just an illusion or an extreme denial; My vision of the world made perfect sense to me. I still saw myself as a scientist, a master of the rational, and in fact I was still working hard on other people's brains.
One day, when I was acting particularly strange, my family took me to the emergency room in Georgetown.
Dr. Atkins entered the hospital room looking devastated, as if he had failed me.
My poor doctor. He does not understand, I'm fine.
In fact, I was the opposite of the fine. Deep in my brain, a war broke out on a large scale. The tumors that had been irradiated were shedding dead cells and creating waste and dead tissue. Throughout my brain, the tissues were inflamed and swollen by metastasis and the double assault of radiation and immunotherapy. In addition, I had new tumors, more than a dozen. My blood-brain barrier, which normally prevents circulating toxins from entering the brain, has been altered by these new tumors, as well as by the treatment and filtration of fluid. The fluids accumulated in my brain, irritated the tissue and swelled it.
The largest of the new tumors was the size of an almond. It was in the frontal lobe of my brain. That is the point I knew from my experiments with animals that was so crucial to directing everything that made me human: my ability to think and remember, to express emotions, to understand language.
Not that I could see what had happened to me, though. At that time, only my family and my doctors were able to fully understand what the swelling and location of the tumors was that had led me to behave like patients with mental illness whose brains I had studied. I was still incredibly sick. Although I would finally recover, it would take a while to understand where my unusual odyssey had taken me: madness and back.
I'm a weird case. According to psychiatrists and neurologists, it is very unusual for someone with such severe brain dysfunction to be treated successfully and to return from such a grim mental disability. Most people with as many brain tumors as I just did not get better.
As a scientist, I am aware of how lucky I am. The underlying causes of mental illness are rarely as clear as metastatic brain cancer. However, I feel that I have come to understand what many of the patients I study go through: the fear and confusion of living in a world that has no meaning, a world in which the past and the future are forgotten is completely unpredictable. 19659002] My brain will never be like it was before. He has been injured by tumors, injected with radiation and assaulted with drugs. It is marked, figuratively and literally. And because my brain is different, I'm not exactly the same person I was before the disease. But strangely, I feel completely myself.
Every once in a while, he would make stupid jokes, pretend to lose his mind, pretend that he did not know where he was. Mirek did not laugh. It was cruel, I realized, and I stopped doing it. After all, I'm the only one who did not witness what happened. I am, in a way, the one who suffered the least.
Adapted from "The Neuroscientist Who Lost Your Mind: My History of Madness and Recovery," by Barbara K. Lipska with Elaine McArdle, which will be published by Houghton Mifflin Harcourt on April 3. Copyright © 2018. Reproduced with the permission of the publisher. All rights reserved.
This article appears in the April 2018 edition of Washingtonian.