“No, no, you come back. I’m tired!”
“It will be much faster if you drive here,” he says, beginning to get angry himself.
By now, Cheyenne has finished her run and arrived at the parking lot. She listens with a quizzical expression as I argue with Mirek. When I tell her why I am so upset—“I don’t know where he is!” I whine—she offers to go pick him up in her car.
“No!” I snap. “Leave him there with those stupid chanterelles.”
“Why don’t we take a little walk,” she offers gently. “Just until Witek arrives.”
But I do not want to walk with her. I am furious. I decide to go find Mirek myself. I get into the car and start the engine. But should I turn left or right? What did Mirek mean by a loop? I can’t picture it in my mind.
Finally, I pick a direction randomly and head down the road.
I’m bewildered and increasingly irritated. The trees, the fields, all of them look familiar yet at the same time unrecognizable. And no matter how hard I try to retrieve the concept of a loop from the depths of my brain, it eludes me.
I drive very slowly, growing angrier and more exasperated. I begin to fixate on Mirek’s behavior.
I’m tired, I need to eat now, and he wants me to find him? He might as well be lost in a giant forest in a foreign country. This is Mirek’s fault, entirely his fault—he gave me the wrong directions!
Up ahead, I see Kasia and Witek running along the road in my direction after finishing the cycling portion of their workout. Unlike every other time in my life, the sight of my beloved children does not make me happy. I stop, and Kasia gets into the car. Witek keeps running to meet up with Cheyenne at the parking lot.
Seeing my scowl, Kasia asks, “Mom, why are you so angry?”
“Mirek is taking so long! I want to go home! Pieprzone kurki! Damn mushrooms!”
“Mirek’s picking mushrooms,” she says soothingly. “We’ll be there soon.” She gives me very simple directions—“Just keep going straight, Mom”—but I’m angry with her too.
“How can you be so sure that I need to go straight?” I say. “It’s annoying. Why am I at fault for this stupid loop and the park and everything?”
Her eyes well with tears. “We’re all here for you,” she says. “Why are you so angry?” she asks again.
“Because he’s late!” I half scream.
But then, ahead of us, there is Mirek, standing at the side of the road smiling and waving, his bike against a tree, a full bag of mushrooms in his hand. He puts his bike on the car and climbs in with his bounty. At first, he doesn’t notice my dark mood.
“Look at all of these!” he says happily.
I refuse to look. I want to toss the chanterelles out the window.
“I need to eat!” I shout. Mirek looks at me with a shocked expression.
Kasia offers to drive, and I move into the passenger seat, too tired to argue with her. I sit in stony silence as we head to our picnic spot, where Witek and Cheyenne join us. As they lay out the tablecloth and unpack sandwiches, fruit, and granola bars, I fume. We eat quickly, with little conversation, my inexplicable anger unnerving them. The food helps a little, but I’m still incredibly tired and angry at the entire world.
When we get home, Witek washes the chanterelles and I go upstairs for a nap.
An hour later, I wake up and head to the kitchen to begin making dinner. Each day, cooking has become harder for me, but now, as I stand here, I can’t remember what to do. Not even the simplest steps.
“Where are the pots? Where are the spoons?” I grumble. “Why can’t I find anything?”
Everything is gone! My family has gone behind my back and rearranged my kitchen! I slam drawers and pull open cabinets in a frenzy. It’s all wrong, everything has changed. Why would they do this to me?
I finally find what I need. But as I set to work, the simple recipe that I’ve made hundreds of times seems like a complex mathematical equation.
I try to recall the ingredients and locate them in the pantry. But it’s so hard! I grow more agitated, swearing and banging cabinet doors. Mirek peeks in and offers to help.
Kasia and I relish a breakfast of chanterelles and scrambled eggs the day after our fateful excursion.
“No!” I shout. “I make the dinner! I always make the dinner! I’m not going to stop now just because you’ve moved everything around!”
I manage to create some strange concoction that they politely eat at a tense dinner table where no one talks. For the rest of the evening, I barely speak, and when I do, it is only to criticize them.
Despite the fact that I am clearly struggling with so many simple tasks, I continue to be very driven, especially with regard to getting back to the sports I love. I have a powerful desire not to interrupt my training routine and daily life. Altering my habits means I have to accept that I am not okay. Conversely, willing myself through a draining workout proves that I can overcome any obstacle and beat any foe—even brain cancer.
But my feelings of power and strength are an illusion, born in large part of the high doses of steroids I am taking combined with my natural determination to survive.
And while I’m feeling better, my frontal cortex is not functioning normally. Just days earlier, it was being squeezed and pressed against the inside of my skull because of the inflammation and swelling in my brain. If I hadn’t been treated with high doses of steroids in the ER, I might have suffered permanent damage to my frontal lobe. I could have lost forever critical cognitive functions, such as judgment, as well as my social skills, empathy, and personality. In fact, if the inflammation and swelling had not been caught in time—had my brain stem been choked off and sent me into cardiopulmonary arrest—I could have died.
Since my frontal-lobe function is still compromised, my brain cannot respond appropriately when faced with complicated or demanding tasks. That morning before we went to the park, when I was still at home in a quiet, familiar environment, I behaved normally. For that reason, there was a strong emotional incentive for all of us to believe I really was fine, especially when I insisted I would have no problem walking in the woods.
But after walking for seven and a half miles, I became exceptionally tired and hungry, and at the end of the two and a half hours, my brain was in no shape to handle much of anything. Depleted and exhausted, it had entered survival mode. When called upon to do anything that was even slightly complicated—such as finding Mirek’s phone number, calling him, processing his request to locate him, retrieving from my memory a visualization of the road, understanding it was a loop, or recalling which way the one-way traffic went—my traumatized brain fell apart. With that kind of information overload, the neural connections within and between my frontal lobe and other brain areas became clogged, like a traffic jam in my head. Finally, my advanced thinking came to a near-complete standstill. Sensing itself endangered—too much going on, too many demands!—my brain ignored everything but primal necessities. Rest, rest, rest! it told me. Rest and eat! Do not engage in anything else! Your survival is in jeopardy!
Try asking a hungry toddler, or even a hungry eight-year-old, to solve a puzzle after you explain that dinner will be ready soon. She will throw a tantrum, kick and scream, call you names. Since her undeveloped frontal lobes will not mature until her mid- or late twenties, she is controlled in large part by her instincts and basic emotions related to survival. She has no impulse control, is not rational, has a short attention span, and cannot understand the concept of waiting for a reward—food—that will come later. Her brain is telling her one thing: she must eat now.
Try the same experiment with a marathon runner who is just reaching the finish line. He would rather slap you in the face than try to solve a simple algebra problem. With its energy stores almost completely depleted, his brain is hoarding whatever’s left for the region essential to survival: the primitive limbic brain, which operates autonomous functions, like keeping his heart and lungs operating, and regulates basic emotions like f
ear. His brain has switched off the luxurious, sophisticated frontal lobe, which enables problem-solving and other higher cognitive functions that make us human, including the ability to evaluate options in order to make judgment calls. For the exhausted marathon runner, these more refined skills simply aren’t as essential as the basic brain functions that will keep him alive, so they go into a kind of hibernation until there is enough energy for them to spring back.
I experienced this phenomenon myself when I ran marathons. In the final several miles, I could never calculate my pace because my brain could not do the necessary arithmetic. As I approached the end and focused only on getting across the finish line, I was in a zombielike mental space. If anyone interrupted my singular focus, I reacted with anger. When my husband tried to tell me encouragingly that the finish line was close, I would snap: “Bullshit! It isn’t close enough!”
Or take my elderly mother. Otherwise brilliant and fully functional, she cannot engage in more than one task at a time these days because her frontal cortex—which deteriorates as a person ages—gets overloaded easily. When too much is happening around her, she becomes disoriented, panicky, and angry.
Similarly, patients with schizophrenia don’t perform well under conditions of increased cognitive pressure. Brain-imaging scans show that when people with schizophrenia are presented with overly demanding tasks, such as solving complex tests, their prefrontal cortices are not activated at the same level as neurotypical people’s. When too much is asked of them or there is too much stimulation in the environment, their already compromised brains fall apart further. They might behave angrily and inappropriately, like I did during the park misadventure.
Before we went to the park, I was largely fine. But with too many demands on my brain that day, the most advanced part of it—the most human part—simply shut down. My meltdown was clear evidence that I was not out of the woods yet. And I would need even more aggressive treatment to stay alive.
9
What Happened, Miss Simone?
One afternoon at the beginning of July, I’m walking with Witek on a quiet, empty street, holding tight to him as if I’m afraid I’ll lose him. We’re headed from home to a nearby pharmacy to pick up my prescription for oral steroids. I’ve been having such trouble with directions lately that we’re going hand in hand, my son and I.
I look at the contours of his slim face and his strong muscular body. Witek is all I could have wished him to be—a scientist working on the brain, an athlete, and a kind man. He finished his first Ironman just a couple of weeks ago, while I was in the ER, and now he’s training for the next one. His goal is to qualify for the Kona Ironman in Hawaii, the crown of the Ironman competitions. He’s found the love of his life, Cheyenne, who shares his fascination with endurance sports. I’m proud of him and glad he is by my side.
But today I feel acutely that our lifelong roles have reversed. I am no longer his strong mother-protector. Instead, he’s leading me as if I were his little daughter. His presence gives me a warm sense of safety but I feel odd—fragile and dependent.
We talk about everyday things: his work, friends, the weather. The air is damp, the sidewalk wet. As often happens here in July, there have been some severe storms. But I don’t remember them. I know there’ve been storms only because I see tree limbs scattered all over our neighborhood, and several houses have been damaged by huge branches falling on their roofs.
We pass a car with half of a tree splayed across it. The car is crumpled, the metal mangled. The windows are shattered, the glass all over the sidewalk.
“Look at this car!” I say to Witek. “What a terrible thing. Wow, half the tree fell on it!”
“Yeah, bad luck,” he agrees. We continue walking.
Inside the pharmacy, I cling to Witek, not confident enough to let him out of my sight. But as we wait for the prescription, he wanders off, checking the products on the shelves.
I find myself uneasy. There are too many people here, too many things going on. I start to meander but have trouble navigating the store. I knock into shelves, bump into other shoppers. It’s as if I’ve lost my balance or can’t estimate my distance from objects. I don’t quite sense the boundaries of my own body, can’t really feel where it starts and ends, have no real awareness that this is me and that is the outside world. I feel as if I’ve fused with my environment.
I’m frightened. Where is my son?
Witek finds me, my prescription in his hand, and we head for home, walking slowly as I hold on to his arm. We pass a car with half of a tree splayed across it. The car is crumpled, the metal mangled. The windows are shattered, the glass all over the sidewalk. There must have been a storm last night.
“Look at this car, Witek!” I say. “What a terrible thing—a tree fell on it.”
Witek gives me a strange look. He seems surprised and uneasy. I don’t like it.
Something is wrong. What have I done?
As I look into his face, I grab him tighter. I’m afraid to let go.
Like a person with early-stage Alzheimer’s or any number of other mental conditions, including brain injuries, I am losing my short-term memory. While I retain sharp memories of my childhood and various long-gone incidents—which is why I can write so much about them—I can’t remember what happened just minutes ago. Short-term memories are processed differently in the brain than long-term memories, so people with dementia can often remember events that happened in their childhoods but have trouble recollecting what they had for breakfast that day. Long-term memories are tucked away in our brains for safekeeping with strong emotional attachments tied to them, since they may be useful for survival. Short-term memories appear to be more like temporary factoids waiting to be categorized and evaluated. If important, they’ll be stored. If they’re unimportant, they’re not tagged for retention and will vanish.
But I don’t realize that my memory is faltering. I don’t realize that I’m missing anything at all.
“Mom, we saw that car on the way to the store,” Witek says carefully. “You don’t remember?”
I’m not sure. I’m not sure of anything anymore.
Late the next morning, Mirek and I drive to a nearby trail that snakes through the woods behind the houses in our neighborhood. Strolling among the trees, we move slowly, holding hands. We talk about what to make for dinner, what shopping needs to be done—the small talk of everyday life. But mostly, we enjoy the silence.
Mirek decides it is time to head back. In less than half an hour, we reach our car, which is parked on the side of a quiet street. When he gets into the car, I tell him I’m not ready to stop walking. I like to move. I can rarely stay still—at the office, I’ve always been one to jump up and stretch and walk through the labs, check up on things—and I try to find every opportunity for more time outdoors.
“I will walk home,” I say. “I need the vigorous movement, okay?”
He hesitates, then tells me he’s not sure I’ll be able to find my way back.
“Oh, please, we’re just a mile away! Of course I can get home,” I say. “I know these streets as well as you do.”
I turn and start walking, fast. Moments later, he passes me in the car. I wave and he waves back, smiling.
It is a hot and hazy July afternoon. The world around me is quiet, which I cherish. A few birds chirp cheerily; cars hum in the distance. I walk happily, legs moving briskly, arms pumping to increase circulation in my upper body.
At first, my stride is very fast—but not for long. I soon tire and slow down. My body is a shadow of what it was before the treatment and stress of illness took their toll. I’ve lost a lot of muscle mass, the result of high doses of steroids. I look down at my thighs, once muscular and strong, capable of running and cycling for tens of miles over rocky paths, desert sand, snow, all kinds of terrain in all kinds of weather. Now I see scrawny legs barely able to hold me upright.
I continue walking nevertheless, convincing myself that I will fight through this illness, improve
my pitiful form, and return to my athletic self.
I pass intersection after intersection, dutifully checking the street signs. I’m being careful; I don’t want to get lost. But after a few hundred yards, I stop recognizing the streets. I know their names, all right—that is, they sound familiar—but I can’t pull up from memory where they lead or which direction they run.
Okay, I know I am a little more than a mile from my house, so it cannot be very difficult to find, I assure myself. I keep walking.
I can’t be lost—not when I’m so close to home. I just need a bit more time to come upon the correct street and recognize the houses. Then I’ll easily find mine.
I don’t panic. I don’t even worry. I just walk and walk. All the quiet houses look exactly the same; all the deserted streets seem identical. There is not a single soul outdoors; the heat must be keeping my neighbors inside. No one’s mowing the lawn or trimming hedges. There’s no one to ask for directions.
I keep walking. But I’m getting really tired. And I need a bathroom. I really need to pee.
I know there are no public bathrooms for miles, and no woods here either, just house after house after house. I look around to find some bushes where I can do my business. But there are none to suit the purpose. Just manicured lawns and evenly mowed grass and nicely trimmed trees.
I can’t wait much longer.
I can’t wait at all.
I pee. I pee in my shorts. I don’t pause or even slow my pace. I walk and pee. I don’t want it to happen, but it does, as if it has a mind of its own. I’m not concerned that somebody will see. I stroll along the street past the houses of my neighbors, peeing my pants like a little child, and I don’t care.
An hour or so later, I flag down a car at an intersection and ask the driver for directions. But I have trouble explaining where I want to go. I tell him the address but he doesn’t know where my street is. In an effort to figure out where I live, he asks additional questions, like whether I’m near this or that neighborhood landmark, but I’m unable to give any meaningful details. He offers to drive me around but I refuse to get in his car. It’s not that I’m afraid to ride with a stranger; it’s that I want to walk. That was my plan, and nothing is going to change it. He volunteers instead to lead me to the closest major road in the hope that it will jog my memory.
The Neuroscientist Who Lost Her Mind Page 14