Each time I snap at him, he gently asks me to calm down. I hate that—it’s so stupid and weak. It just makes me angrier.
Why is Mirek such a wimp? What happened to him?
He frets over my health, always asking me if I need anything, urging me to do the things I enjoy—to go for a run or take a bike ride. It irritates me. More and more, I avoid his eyes. I don’t care how it affects him. I don’t care what he’s thinking or feeling. I don’t care what he is going through at work or anywhere else. I have more important things to focus on.
What will I have for breakfast? Is the table setting complete? And now Mirek has put the forks somewhere that I can’t find them! Why would he do this to me? Where is the salt? I can’t remember what I was planning for dinner. For the life of me, I just cannot recall. It really bothers me. And where is Mirek?
Bothered by my short temper and egotism, my family tiptoes around me. And, out of earshot, they quietly share their concerns. Upstairs in his office, on one occasion that I will learn about much later, Mirek speaks with Kasia on the phone, telling her that I’m being difficult, so difficult that he is really struggling. She can tell that he’s trying hard not to cry.
I’m not the same woman they’ve always known, they agree. I’m an angry, overly critical, selfish version of myself. My characteristics are basically the same, for the most part, but exaggerated. I am an over-the-top caricature of myself.
But my behavior is not so bizarre that it sends up red flags about my health. I’ve always spoken my mind, more so than anyone in the family; they’re used to that. And my concern about the chemicals in the pesticides, for example, wasn’t unreasonable, they admit; chemicals can be dangerous, after all, so the fact I ripped into the pest-control guy wasn’t completely out of line.
So my awful behavior continues unchecked. And for my part, I remain unaware that anything is amiss. With a brain that’s not functioning properly, I am singularly focused on my own needs and entirely blind to the signals that something is seriously wrong with me.
There is one thing I care about more than anything else: getting that fourth and final infusion. I’m going to finish this treatment even if I have to drive myself to the hospital. Even if I have to walk the twenty miles to get there, crawl into the infusion unit, and stick the IV into my own vein. I’ll do it. I’ll do whatever it takes.
6
Lost
At the office, I work long hours just as I did before my diagnosis. I act like nothing is different. I review scientific articles and manage my large staff, making detailed plans for the institute’s ever-expanding brain bank. We continue collecting postmortem brains and setting up scientific collaborations with colleagues across the country at a faster and faster pace to support increased demand as more people in the scientific community learn about our brain bank. I assure my supervisors that I’m back to normal, and I send e-mails with cheery subject lines like I am feeling good!
And I am feeling good! I’m staying optimistic about my prospect of surviving this deadly cancer. While I’m no longer as strong as I was before I began immunotherapy, I’m still capable of powering through a normal workday—and, when the occasion calls for it, summoning great bursts of energy for a project or a meeting. I believe I’m doing very well, apart from the tumors in my brain.
But of course, I’m not.
Increasingly, I struggle with some tasks, and I’m having trouble focusing on what I’m doing. Reading is especially confusing. I begin delegating some of my work to my employees and sending e-mails in all caps—the electronic version of shouting, something I’ve never done before. On one occasion, instead of proofreading an article for a prominent academic journal myself, as I’ve always done, I immediately forward it via e-mail to a postdoc with a blunt note: please do this. Another time, I e-mail the organizers of a professional conference whom I’d asked to make hotel reservations for me:
Thanks. These are super special cicrumstances for me, i am batting a deadly disease. As a federal employee, i have to wait for travel approval and can only use gov rate fee h
For hotel. I tried to ask for accommodation a few weeks ago biy to mo avail. Please help! Thanks. Barbarag
I see nothing amiss with this e-mail, and no one says anything to me about it.
Nor do I recognize that I’m becoming more and more uncaring about what other people think, and more disinhibited. At some point in June, for instance, I stop pulling down the blinds in the bathroom window at home when I’m showering. I just stop caring about who might see me. It’s just too much work—and why would I block a nice view into the park?
It’s around this time, in June, that I go for a run through the neighborhood without my prosthetic breast and with hair dye dripping all over me, surprising Mirek with my bizarre appearance when I return home. I see nothing off about the way I look.
I don’t realize what’s happening at the time, but this lack of inhibition and judgment are common in people with frontal-lobe problems due to dementia, stroke, injury, swelling in the brain, or any number of issues. The frontal lobes give us the capacity to predict the consequences of our behavior and avoid actions with expected adverse reactions. Each of us makes thousands of judgment calls every day, in most cases without even having to think about them. When a person suddenly breaks normal social
