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 forgetting,” 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
