The morning of January 15, I use Waze to guide me to Inova Fairfax Hospital and proceed to a parking garage. There are no empty spots so I climb to the highest level and park on the open floor. I get out of the car and look around.
This feels so familiar . . .
I have a strange sense that I’ve been here before. But when it was, I just cannot remember.
I take the stairs down to the first floor and follow signs to the hospital, which seem complicated: up and down, left and right. These corridors, these elevators, these signs . . .
Have I been here before?
With each step I take, a feeling of uneasiness and mystery intensifies. I reach the receptionist’s desk in the waiting room. From my fogged memory, I seem to recall these places but cannot remember the circumstances that might have brought me here. After a while, I hear my name called. I lift my head and see a woman in the doorway.
“Oh my gosh, it’s you!” she exclaims. “I was sure you would never come back.”
I vaguely recognize her. Slowly, as if from some previous life, I recall her name: Theresa. When we walk into the therapy room, I recognize it, too, in a fuzzy, imprecise way.
Theresa asks me how I’ve been and what brought me back.
I try to explain. I tell her about my illness and treatments, about the tumors in my brain. I tell her that until just this moment, I didn’t have the slightest shred of memory that I’d visited this hospital before. I tell her I recognize her face and recall her name but not much else.
She smiles.
“We were all very sure you would never return,” Theresa says. “At your last visit, you were so angry and so dismissive of our advice. I told the staff we’d never see you again.”
When I cringe, she quickly adds, “I’m so happy you came back.”
Now the memories rush in. I recall arguing with her, my rude tirade, my refusal to listen. I remember storming out in anger.
I apologize over and over. I feel terrible about how I acted, but she comforts me.
“I understand,” she says kindly. “I’ve had patients before who refuse to go through this treatment because it doesn’t feel or look right to them. They prefer to suffer.” She takes a look at my arm. “Let’s get back to work.”
I sign up for twelve PT sessions, and over the next two months, I follow her instructions with devotion. I learn how to bandage my arm and order the special lymphedema garments that I need. I do everything she tells me, and my arm improves dramatically. One day, with a sly grin, Theresa tells me I’m her “most improved patient.”
As we work together for my recovery, Theresa and her colleagues become my dear friends. When I finally finish my sessions, we have tears in our eyes as we hug goodbye.
I am now remembering other things that happened in that period, albeit hazily. I recall the young pest-control guy who visited us—and how I angrily fired him when he couldn’t tell me what was in the chemical sprays he used. I remember the day I was lost in the street and peed all over myself.
And chanterelles are forever ruined for me. Once they were my favorite mushroom and one of my favorite foods, an emotional connection to Poland and a special part of my childhood; now, I can barely say the word aloud. The very name transports me back to that terrible day in the park. They prompt a kind of traumatic response, not just for me but for my family. Later, once I realized that my behavior that day was part of my mental breakdown, I begin to associate chanterelles with losing my mind. I worry it will happen again. It’s a fear that haunts me every day.
Nearly a year after the incident, when he can finally bear to talk about it, Mirek tells me that on that morning, he and Kasia worried that it wasn’t safe for me to walk briskly for seven-plus miles in the park. But when I insisted I was fine, they had ample reason to believe me, he says. Six weeks after the surgery in January 2015 to remove the brain tumor that had affected my vision, I had radiation to kill any lingering cancer cells around the surgical site and two tumors. The very next day, Mirek and I were on a twelve-hour flight from Washington, DC, to Hawaii, where we cycled two hundred miles and I participated in a 5K race.
Before we made the long trip, we’d asked Dr. Aizer, my radiation oncologist at the Brigham, if I’d be okay. “Absolutely! Enjoy yourself!” he’d answered. He was right; I suffered no ill effects from our ambitious vacation. A few weeks after that, I went cross-country skiing in New England with no problem. It was typical of me. In 2010, in the midst of chemotherapy for breast cancer, I’d gone downhill skiing in Colorado at an elevation of fourteen thousand feet, a helmet covering my bald head, and one arm so swollen from lymphedema that I was barely able to grip a ski pole.
With that personal history, it never occurred to me to rest after the CyberKnife procedure. And my family believed me when I said I was strong enough. To all of us, it seemed clear: walking in the park would be, well, a walk in the park.
Kasia now says that they all were so desperate to believe I would be okay—that I wasn’t going to die—that even she, a medical doctor, chose to ignore her concerns. “We wanted so much to restore the normal order of things, to get back to our normal life,” she says.
Of course, for other families not as obsessed with fitness as ours, the decision to exercise vigorously in the woods that day probably seems crazy. But it wasn’t crazy for us. My insistence that we work out was completely in line with my driven personality and my role in the family as the one who set the schedule. I didn’t become someone entirely new. In fact, the opposite happened: I insisted on being myself despite the cancer and radiation.
My children and Cheyenne tell me now that they regret letting me drive the car to find Mirek amid the chanterelles. They should have insisted one of them take over, they say. But I was so angry at that moment that they were afraid they’d escalate the tension by objecting. “I figured as long as you weren’t going on the highway, that you were on a park road practically empty of cars, it would be okay,” Witek says. What he mostly remembers, he says, is how much he worried that my unpleasant behavior would be the new normal for his mother. Worst of all, he thought that that unloving version of me would be the last one they would live with before I died.
Our family, like so many others affected by mental illness, struggled to adjust to the new normal. As my husband and children found when I became mentally impaired, making that adjustment was extremely difficult. It was hard for them to recognize my personality changes, especially because I insisted I was fine. Even as the changes became more obvious, my family remained in denial because the new normal was so disturbing. It pained them that their mother or wife couldn’t function the way they were all used to. Accepting that things were different meant that my family would have to alter its long-standing way of operating and that someone else would have to step into my role as the one always in charge. If I could no longer function in that role, moreover, who was going to tell me? How would they take that responsibility away from me? Who would assume my position in the family structure, and how much would I resist? Could they force me?
In my family, no one wanted our happy life to change. So we all refused to accept the full reality of my illness. Training for triathlons! Chanterelle hunting! These are the things that we love, and so off we went to the park that day as if I’d not just learned that I soon might die. I suppose you could argue that the exercise helped relieve stress, and it certainly did. But that’s not the main reason we headed out for the day. We did it because it’s what we always did—and we did not want to accept that anything was different.
If a loved one or coworker suddenly slumps over and is paralyzed on one side of his body, most of us would recognize symptoms of stroke and immediately call 911. Acute symptoms like this are easy to see. But behavioral changes can be much harder to recognize and accept as alarming or serious. This is especially true if they come on slowly, like gradual memory loss or small changes in someone’s physical abilities. We tell ourselves, “Mom is just getting older—of course she’s forgett
ing,” or “Her joints ache, that’s the reason she’s no longer a sweet and loving person.” It can be very difficult to admit that personality distortions like the ones I experienced—anger and irritability, loss of inhibition, and lack of empathy—might be signs of serious physical problems in the brain and that a physician’s help is needed.
When I became very angry in the park, my family could tell something was off but they also felt there was little they could do about it. I was tired and grumpy, an exaggerated version of my usual type A self—but nothing so extreme as to set off serious alarms. They did ask me to take it easy. But was I listening? That night, I was the one who cooked dinner for the family even when it became clear I was struggling and couldn’t navigate my way around my own kitchen—because that was my role, and I had no intention of giving it up.
11
Survivor
Despite all my years of studying brain disorders, for the first time in my life I realize how profoundly unsettling it is to have a mind that does not function. And the more I remember from the days and weeks of my madness, the more frightened I become that I will lose my mind again. Perhaps madness is not the proper term to describe my condition at the time. After all, it is not an official diagnosis, but it is often used informally to mean mental instability, insanity, and angry and disorganized behavior. So instead, I think of myself as having experienced a number of symptoms connected to a range of mental disorders. In other words, I had a brush with insanity.
And I have come back.
Despite conducting research on mental illness for over thirty years, I believe it is my own suffering that truly taught me how the brain works—and how profoundly frightening it is when our minds fail. I personally experienced how scary it is to live in a world that makes no sense, where there is no logic because the past is quickly forgotten and the future can’t be planned or foreseen. As a result, I have become preoccupied with examining my own mind. I continuously test myself to see if I’m slipping again. I solve math problems, try to remember dates, check to see if I’ve forgotten any loose ends or details. I exercise my own mind like I’m training for a marathon; I try to be more curious, inquisitive, sharp, and logical in an effort to make up for any losses that I may have experienced. I do this because I live in constant fear that my insanity will return.
And—to memorialize my experience—I write, write, write. I feel the overwhelming urge to share my experiences with other people. By sharing, I relieve my own fears and perhaps soothe those of others. These are my new obsessions.
On March 13, 2016, a little over a year after I was first diagnosed with metastatic melanoma, the Sunday New York Times publishes my essay “The Neuroscientist Who Lost Her Mind.” The response is immediate and overwhelming. I receive over two hundred e-mails from people all over the world, thanking me for writing so honestly about my experience with mental illness, and my piece is one of the most e-mailed articles in the New York Times that week. Many people with mental illness and their family members write to me. Physicians who work in the field thank me for shining a light on this issue. Dr. Thomas R. Insel, a former director of the NIMH, writes to me, “You have done something so important for people with serious mental illness who do not have an observable lesion. Not only have you reminded us all that mental illnesses are brain illnesses, you have reminded us to be hopeful. People recover.”
What is it about this article that struck such a chord with so many people?
Brains fascinate us with their complexity and the mysteries they hold. Everything we dream, think, feel, and do—everything that makes us who we are—comes from the brain. We are our brains. It is terrifying when the mind breaks down due to illness or aging, and we lose what is dearest to all of us and to our loved ones: our personas. People are hungry to know more about the mind and the mental ailments that we all hope can one day be explained and cured.
In April 2016, an ordinary envelope arrives in the mail. When I open it, I’m astonished to find I have a remarkable, once-unimaginable new title for myself: cancer survivor. On May 6, 2016, the Lombardi Comprehensive Cancer Center is holding its annual melanoma survivorship luncheon, and I am among the guests invited by Dr. Atkins and his team.
Survivor. Am I a survivor? They must have made a mistake. I have not been cured. At best, I am in remission. True, I’m still alive sixteen months after my diagnosis, which is an incredible feat given the grim prognosis of my disease: four to seven months. But I’m still suffering from rashes all over my skin. And who knows how many cancer cells continue to lurk undetected in my body, waiting to sprout into tumors?
But there it is, in an official letter, an honor more precious—and unexpected—than any I can recall.
What does survivor mean? What does it take to be admitted into this special club?
In the days leading up to the event, I ask myself many times about my surprising new identity. I’m curious about what it really signifies. At its most basic, a survivor is someone who was seriously ill but isn’t dead, at least for now. Not a bad label, given the alternative, but somehow less than entirely satisfactory. Or maybe survivor includes everyone currently free of any detectable signs of the disease. For me, this definition seems too random, too dependent on the accuracy of our current diagnostic tools. Melanoma cells can lay dormant and hidden for years, biding their time and then emerging from the depths of the body when the conditions are right to strike and kill quickly. Survivor is a problematic category if it simply means that someone’s cancer cannot be detected with the tools available at the point in time when the hosts mailed out the luncheon invitations.
I Google the general definition of the word and learn that survivor means a person who remains alive, carries on despite hardships or trauma, perseveres, and remains functional or usable. This sounds a lot more inspiring, especially the last part, “functional and usable.”
Am I functional and usable? What about the others who attend? How incapacitated will they be? Are they still functional and usable?
I start obsessing over this idea and begin examining my own life, all that I have done and been, the good and the bad. I think about the people I love, especially the two people I brought into this world and nurtured, Kasia and Witek. Am I a successful human being? What have I achieved? Do I measure my life by my career success, the hundreds of scientific lectures I’ve given and articles I’ve had published? Or is my real achievement my devotion to my family, who in turn have stood by me through the wintry days of gloom and tragedy? I reflect on my cheerful, still so innocent grandsons, Sebastian and Lucian, who always wait on the front porch for their loving babcia to arrive from Washington, DC.
But I’ve also failed. I still carry guilt and regret for the breakup of my first marriage and for not being there to support my first husband through his unsuccessful battle with melanoma. And what about who I am now? Am I functional? Usable?
The day of the luncheon is dreary, rainy, and cold. I’m not sure I want to go there and mingle with people I don’t know, people who were—or maybe are—on the verge of dying. But I shake off my reluctance, and off we trek, Mirek, Witek, Cheyenne, and I.
More than seventy people crowd into a conference room at Georgetown University Hospital: Dr. Atkins and other doctors and nurses and about thirty melanoma patients along with their families and friends. I recognize many of these faces from my visits to the cancer center, although in most cases, at the time I had no idea that they also were suffering from melanoma. Today, everyone looks healthy, and we’re all smiling.
The survivors range in age from their late thirties to over eighty, with most in their sixties, I’m guessing. And almost all of them are eager to share their stories: symptoms, diagnosis, treatment. Like soldiers emerging alive from a battlefield with emotions still raw, they easily discuss their experiences with comrades who’ve undergone similar hardships, the only ones who really understand.
One woman tells us she was diagnosed fifteen years ago with early-stage melanoma. Unfortunately,
in recent years the disease metastasized throughout her body including her spine. Immunotherapy saved her life but she has trouble walking. She is wild type, meaning she doesn’t have a mutation in BRAF, the melanoma-related gene, like I do, so the targeted treatment I got won’t work for her. She tells her story with a smile as her husband holds her hand.
A tall man of about seventy, a retired doctor, was diagnosed with advanced melanoma over six years ago. It didn’t appear first on his skin—which is unusual but not unheard of—but instead attacked from inside his body. He smiles as he describes being saved by the Georgetown team and how well he’s feeling now. A stout and healthy-looking gentleman of about the same age brags about the number of beers he drinks on a weekday (over twenty) and on the weekends (over thirty) and tells us about his beloved horses and chickens on the Southern farm where he lives. He has undergone various harsh treatments for advanced melanoma, some without much success, but the latest immunotherapy has worked for him, although he’s developed another kind of cancer. Unfazed by these adversities, he says he looks forward to horseback riding and drinking. A couple seated at the far end of our table has come all the way from Florida, where they’d retired just weeks before the wife’s melanoma diagnosis. The Florida doctors told them she would die soon because there were no viable treatment options. But she found the immunotherapy trial at Georgetown, which has been successful so far, and now they commute to the Lombardi center every few months so she can get checkups and scans before returning to golf in the Florida sunshine.
We watch two short videos of other successful cases—other survivors. A woman in her forties describes how she discovered a large tumor on her thigh that turned out to be melanoma and was informed by her doctor that she would soon die. As she tells her story, her two very young daughters and a stepson giggle and play and hug her. She limps slightly, smiling shyly. A man well over eighty developed a large, scary-looking tumor on the scalp of his bald head. After immunotherapy, he says, his tumor disappeared as if a magic wand had touched his scalp.
The Neuroscientist Who Lost Her Mind Page 17