My stride is unsteady as I walk along following the man’s car. But I’m not troubled by my wet shorts. He drives very slowly, and I tail him through the monotony of the red-brick façades of the houses in our northern Virginia suburb. When we reach the road, the pieces of the puzzle suddenly fall into place. I recognize my neighborhood: that little house with yellow siding on the corner, the brick mansion across the street. I now know that I have to turn left onto the busy road, and a hundred yards later, turn left again. I see my house.
Mirek greets me with relief. He cannot understand why I took so long.
“I got a bit lost,” I say. “These streets weave in and out, and it’s hard to follow them.”
“Okay,” he says, giving me a kiss. He’s clearly happy I’m home.
“And I wanted to pee so much that I wet my pants,” I say.
He looks down at my wet shorts and legs. “Oh, dear,” he says with affection. “Just wash it off.”
This incident marks the first time in my conscious life that I am incontinent. For the next month or two, I will sometimes have trouble controlling the reflex to urinate (in medical jargon, micturate) that arises in response to an increase in pressure in my bladder. If I get stuck in traffic on my way to work, as soon as I park my car on campus, I have to run to the nearest building to find the bathroom.
Is it possible that the inability to inhibit the urge to urinate has something to do with brain function? As it turns out, it may be linked to dysfunction of the medial surface of the frontal lobe, which is the cortical center of micturition. A majority of stroke patients with frontal-lobe lesions develop urinary incontinence, and patients with frontal-lobe tumors often can’t tell their bladders are full until the very last moment, when they can no longer control the need to pee. Incontinence is also a common problem in people with dementia, and, in general, it’s a common disorder in older people. There can be a number of reasons for it, many of which have nothing to do with brain disease, such as a urinary tract infection, inflammation of the bladder wall, or prostate problems. But when someone my age suddenly becomes incontinent, it can be a sign that the brain is at fault.
The inability to control urination may be a symptom of other mental illnesses besides dementia. A former colleague of mine at the NIMH, Dr. Thomas Hyde, a neurologist and a schizophrenia researcher, hypothesized that children who would go on to develop schizophrenia took longer to learn to control their bladders than children who did not later develop the disorder. And indeed, the research found that adult patients with schizophrenia had had a higher rate of urinary incontinence in childhood than their healthy siblings. The impaired bladder control that many patients with schizophrenia experienced as children might be connected to delayed maturation of the prefrontal cortex, he believes.
It’s yet another irony for me. While I don’t have schizophrenia, I am living through some of the processes of a disease that I’ve spent my life studying and trying to cure.
Throughout my life, I’ve been quick to react, independent, confident, and stubborn. But now, these qualities are reaching an absurd level. I’m in a constant hurry, skipping mindlessly from one activity to another. My attention span is completely shot. When I try to read, I go faster and faster over the words but have little idea what I’ve read. I jump from page to page, story to story, sentence to sentence, word to word, but I can’t absorb their meaning. I continue to talk on the phone to my children and sister every day but I don’t finish a single conversation. I cut each of them off midsentence and run somewhere to do something of great importance although I’m unsure what it’s supposed to be. I feel anxious and stressed out but I don’t know why. And I don’t listen to what Kasia and Mirek and Witek try to tell me. I know best. They don’t know nearly as much as I do!
One day, I read a story in the Washington Post about a student from a nearby high school who thought she’d been accepted to several Ivy League schools but found that the schools had misled her. I describe the story to Mirek, but when I finish telling him what I’ve just read, he gives me a strange look.
“That’s not what happened at all,” he says gently.
“I just read it!” I insist. “Don’t you think I know what I read?”
“You got it backwards,” he says. “She claimed Harvard and Stanford both wanted her but it turns out she made it all up.”
“No, no. You’re completely wrong, Mirek,” I say angrily, but he gives me a sad smile.
With each new day, I feel increasingly confused. The world seems to be whirling faster and faster all around me. I have trouble catching up with it. I don’t understand what’s happening, can’t follow its meanings. It races forward as I’m left behind.
In early July, the newspaper announces the grand opening of the brand-new Giant grocery store that I’ve waited so long to enjoy. I never thought I would live to see it.
The Giant has taken on a strange significance for me. It epitomizes the cruel passing of time and uncertainty of my own existence, the fragility of my life despite my physical strength, my athletic ability, and my stubborn optimism. Indeed, as I have endured my illness, I’ve begun to resent the massive concrete construction.
That stupid store will be standing there when I am gone.
Now that I’ve lasted long enough to witness the grand opening, it’s really important to me to go. We all decide—Mirek and I, as well as Witek, Cheyenne, and Maria, all of them here visiting me—to head there for the festivities. But the moment we park and I open the car door, I recoil. I’m repulsed by the large crowds and the loud music of a live jazz band inside the front entrance that is welcoming shoppers. My family doesn’t notice my reaction. Witek, Cheyenne, Maria, and Mirek are thrilled. We’ve all loved jazz for as long as I can remember. They stand and watch.
I’m fuming. Under my breath, I mutter, “What the heck! Why on earth is the music so loud? I can’t even communicate with my own family!”
They don’t see how much I hate this. I begin shouting over the music. “This is horrible!” I yell. “It’s too loud!”
They look stunned, and they try to calm me down.
“Mom, this is nice,” says Witek. “These guys are great.” Witek plays clarinet and guitar, and he learned flute in Hawaii when he spent a year there managing a coffee plantation. I like it when Witek plays; it soothes my soul, relieves my moodiness. But this jazz is hurting my ears, pounding deep holes inside me like a jackhammer. It’s painful.
I bolt from them and run through the store to search for the main office; my family races after me. As Witek and the others try to stop me, I demand to see the manager.
When the manager appears, I shout: “Stop the music! It’s too loud! It hurts my ears! Stop the music!”
She looks at me, then at my family. Before she can respond, I turn and storm out.
I rush past the band, and the music causes me physical pain. The notes are like knives stabbing my body.
My family catches up with me, and as soon as we climb in the car and close the doors, I feel better. It’s much quieter, and we drive home in silence. I am calmer already.
“What a band that was!” I try to joke.
No one responds.
My hypervigilance—my body constantly on high alert, and the sense I have that I’m participating in every event with my whole being—is possibly being triggered by stress or anxiety. That anxiety, in turn, gives rise to more stress and anxiety. Making it worse, I have the vague feeling that I’m not in control of myself or the world around me anymore. That loss of control makes me angry.
My extreme reaction to sensory overload is common in people with brain trauma, autism, and many other brain conditions. Normally, the brain is able to sort through the sensory information that comes at it and prioritize what’s important and what can be ignored. When this filter mechanism doesn’t work, the brain can become overwhelmed by all the information it’s trying to process, like a computer bombarded by too much data. The brain can no longer distinguish between what it’
s safe to ignore, like the sounds of distant traffic or the sensation of wind on your face as you walk along, versus what is important, like the honking of the car that’s about to hit you. This horrible jumble of noises and sights and smells can be very upsetting. When faced with significant sensory overload, some people have a reaction akin to a panic attack, like what I experienced at the supermarket.
In my altered state, I couldn’t even begin to comprehend what was happening to me. And scientists are still far away from fully understanding the mechanisms responsible for anxiety, responses to stress, and attention. We do know that they are disrupted in certain mental disorders, including ADHD (attention deficit hyperactivity disorder) and PTSD (posttraumatic stress disorder). We also know that a complex network of neuronal connections between many regions of the brain must operate properly in order to guide a person successfully through the jungle of human experience, which pre-sents all kinds of stressors.
In my damaged brain, even the most innocent of stimuli, something as pleasant as a jazz band, is too much. I can’t handle it.
That night, Mirek and I are watching a movie on the huge flat-screen TV in our basement turned home theater. We snuggle on a comfortable leather couch we bought six years ago when I was getting chemotherapy for breast cancer. We lie so close that we feel each other’s hearts beating, our lungs drawing air, our warm bodies intertwined. Mirek holds me tight, caresses my arm, gently tickles my hand.
I feel safe cuddled next to him like this with his warm, loving hand on mine. But inside my head, a strange and not entirely unpleasant chaos is stirring.
Black and white—death and life—white and black—life and death—black—black—black.
We’re watching a documentary about Nina Simone, What Happened, Miss Simone? The images are flying by . . . the music is blasting . . . her deep, strong voice is entrancing. I’m hypnotized. I can’t move. I’m experiencing this with my whole body. Her voice, her overwhelming persona penetrate me not only through my eyes and ears but through my skin, flooding me with emotions, shaking my insides. I’m mesmerized. I quiver as if I’m absorbing too much for my battered head to consume.
“Too loud for you?” Mirek asks. “I can turn it down a bit.”
“No, no, please! I love it!” I say.
Black and white—white and black—black, black, black.
The images on the screen flash like a monochromatic kaleidoscope, sharp edges, multiple reflections, fast, fast, fast. While it’s hard for me to follow the story on the screen, I can’t tear myself away from what I’m seeing. Simone is beautiful, phenomenal, strong and brittle at the same time, her life passionate, dark, and tragic. I cling to Mirek for support and think about my own impending death.
Black and white, black—black—black.
“Can you pause it for a moment?” I say.
I leap up and race out of the basement and up two flights to my office. I pull open the bottom drawer of my desk and frantically sift through a pile of documents.
There! Found it!
My health directive. I must add something to it, right now. Fast, before it’s too late. Do not resuscitate. I must add those instructions immediately.
I search for a pen and scour the paperwork. Where to add the words? I struggle as I try to read it. Here, I’ll put it here. I try to write but can’t remember how to spell resuscitate. My handwriting is shaky and hard to read. The letters I write are squirming, wiggling. They don’t look like English or Polish or any other recognizable language.
I’m terrified I won’t be able to convey my desperate desire: Do not mess with my body, do not traumatize it, be gentle and leave me alone when the time comes and death is near. Don’t be brutal. Don’t force me to live when my body quits.
I scribble something that’s supposed to be DNR on my health directive and run out of my office. I need to be back in Mirek’s warm embrace. We’ve been such an excellent team throughout the years: through my divorce and the death of my ex-husband, through raising the kids in a strange country and buying and renovating our home when we had very little money, through my breast cancer. And now, through this illness, which looks like it’s going to be the last, most difficult passage in our lives.
I run downstairs, skipping steps, feeling ready. But ready for what? Ready to lie down next to Mirek and embrace? Ready to die? Both? I push away that grim thought. I have edited my health directive. I’ve done something constructive, and I can rest.
10
The Light Gets In
The summer of 2015 continues to torture me and the world around us. The unrelenting heat is killing the grass; flowers are wilting and dying.
One particularly sweltering day, I open the door and a blast of hazy, hot air hits me in the face as if I’ve opened a giant oven that could kill me. But I am not ready to die. I slam the door shut and retreat inside to my cool nest with its air conditioning that hums day and night. Since my doctors don’t want me to drive, I spend most of my days sitting with my laptop on a couch in the living room, taking care of brain-bank tasks or writing my memories.
The steroids I’m on are decreasing my brain’s inflammation. However, they’re taking a hefty toll on my body. My normally slim, long face rounds up like the moon, which is typical for patients on steroids. My body shape changes too, dramatically and so fast it is terrifying to watch. Within weeks, my muscles and athletic figure are gone. My body becomes heavy and inflexible. I look down with dread at what used to be my cyclist’s thighs and runner’s calves and don’t recognize them—they’re emaciated and weak. My flabby belly sticks out no matter how hard I try to suck it in. My swimmer’s muscles, of which I was so proud—triceps, biceps, and latissimus dorsi, the large shoulder muscles—disappear completely, and the skin fills in with Jell-O-like fat. I gain another slab of fat on my upper back just below my neck, turning me into a kind of hunchback. I go from size 4 to size 8 in a matter of weeks. After that last session of radiation, I also start losing my hair. It’s coming out in thick clumps. I hate to look in the mirror; I’m a bald, elderly caricature of my previous self. Am I still the same person? How much change does it take to completely obliterate my sense of me?
I continue to exercise but instead of running and cycling, I mostly walk in the nearby woods in the early mornings and late afternoons. I go shopping with Mirek, holding on to him tightly, afraid to get lost, afraid to fall. My legs are not holding me up as they should; my balance is off. The world around me is swaying, coming in and out of focus. I am not sure of the reason: Is it in my brain or body? Is it mental or physical? I cannot tell. The two are inseparable.
But I can write and work day and night without a break. Steroids fire me up, just as they did in January when I was recovering from brain surgery. Once again I am like a manic person, a woman possessed, a highly driven insomniac. Since I can’t drive, I work from home. I hold long teleconferences with my colleagues, write reports, reply to e-mails, plan experiments, fill out administrative forms, make arrangements with morgues to collect brains for our studies. I can do these things, but it takes a lot of effort. I forget words and tasks. My own brain is still out of order—dotted with horrific craters, enveloped in clouds of inflammation. I swim in and out of the real world.
But as the days pass, I have more and more moments of clarity. I don’t know what’s happening inside my brain but the swelling must be receding because my mind is returning. I start to realize that I’ve been through something very strange, a bizarre and unusual odyssey. Slowly, I also begin to understand where that journey has taken me: into insanity, and now back.
As if from some previous life, as if from the deepest fog of perception, images of my recent past begin to emerge. I’m regaining my hold on everyday life and on reality. It’s like I’m clawing my way up from a black hole and slowly beginning to recognize my surroundings and see the sun. And I’m starting to realize how deep that hole was.
I ask Mirek and the children about the past weeks, how I behaved, what I said, what was
different about me. They aren’t eager to talk. They share as little as possible. They are traumatized by my alien behaviors and the still-looming possibility of my death. And they are afraid that the pretender version of me—the mean one who criticizes them relentlessly, who is distant and unloving and confused and angry—might return.
But sometimes, they tiptoe into testing what I recall, to see whether I have any idea of what the past two months have been like for me—and for them. Witek brings up our walk to the pharmacy not long ago. “Do you remember it, Mom?” he says. “That you couldn’t recognize that fallen tree that you’d just spotted half an hour earlier?”
At first I don’t recall anything.
Was I even there? When did it happen? Was it really me?
I focus and close my eyes. I strain my brain and squeeze my eyes tighter, and as I do, I begin peeling away layer after layer of my own forgotten life. I can smell the wetness of the storm and visualize our stroll along the sidewalks strewn with branches and debris.
The motto that adorns the main hallway of the Georgetown University Hospital pops into my mind: We are all broken, that’s how the light gets in. It speaks strongly to me, and I whisper to myself, “Through my broken brain, the light starts getting in.”
The memories of the past two months begin creeping back. Like scared little critters who’ve been hiding in the corners of my mind, they begin to emerge, testing the ground first before peeking out cautiously from the folds of my beaten brain. With effort, I can recall the bare facts and see the things my family mentions: the tree branch, the sidewalk, the damaged car. I start recalling more events.
The Neuroscientist Who Lost Her Mind Page 15