What part of my brain isn’t working? It’s likely that communication between my prefrontal cortex and my hippocampus is failing, which is unpleasantly reminiscent of the prefrontal cortical connections I disrupted in rats to study schizophrenia. Perhaps the areas that aren’t functioning normally could be determined if I were to undergo a battery of neuropsychological tests as my problems intensify. But no one is testing me like I tested my rats, in controlled experiments carefully designed to examine particular elements of the behavioral impairments. Still, I share some similarities to my brain-damaged rodents: I can’t find my way in the maze of streets in my cozy neighborhood, and I cannot locate the sweet rewards of food and safety that are waiting for me at my destination.
In some ways, my struggles are similar to those of people who have a condition called dyspraxia, the loss of motor skills, motor memory, and the ability to perform coordinated movements. Dyspraxia can be due to a developmental disorder; the actor Daniel Radcliffe has been open about his struggles with it. Dyspraxia is also quite common among people with Alzheimer’s disease, and the symptoms can be progressive: First, patients have trouble with sophisticated motor skills, and later, they are unable to do simple things such as brush their teeth. Eventually, some can’t even swallow.
These kinds of difficulties are also common in people with damage to the parietal cortex. The parietal lobe is also related to the ability to read and do math; dyspraxia often coexists with dyslexia and with dyscalculia (difficulty doing arithmetic, something I will soon begin to experience as well). This could have suggested, if we’d thought about it at the time, that my brain problems were more widespread than any of us imagined.
In addition to dyspraxia, I’m also suffering from loss of visuospatial memory, which makes it hard for me to remember my location and navigate my way through space. These problems are similar to those described in people with a condition called developmental topographical disorientation (DTD). From very early on in their lives, perhaps from birth, people with DTD don’t recognize very familiar environments. Just as I could not find my way home in a place where I’ve lived for almost thirty years, people with DTD have no recognition of their surroundings no matter how many times they follow the same route. For me, this was short and transient; for them, it is permanent.
Spatial orientation involves multiple regions of the brain and a network of connections among neurons in different areas. Two regions, however, stand out as crucial for spatial memory: the prefrontal cortex and the hippocampus. In the case of DTD, it may be the connectivity between these two regions that has gone awry, as MRI scans have demonstrated to neuroscientists who study this rare neurological disorder.
Is this what is happening with me? It’s possible. My prefrontal cortex appears to be dysfunctional and perhaps can’t connect efficiently with other brain regions, including the hippocampus, one of its main, albeit indirect, targets. It’s possible that the lack of communication between these two regions in my brain is the reason why I cannot figure out where I am, even when driving through a neighborhood where I’ve lived for decades.
My changed behaviors do not raise enough red flags for my family and colleagues to wonder whether my brain may be seriously malfunctioning. For one thing, I’m not telling my family the whole truth about every single problem I encounter. I don’t even tell them about how I smashed the car. The lapses in how I usually act can be, and are, easily discounted and explained by the stresses of my grim diagnosis, challenging treatment, responsibilities of family and career.
And, regardless, I’m still functioning at a very high level—which is remarkable, given what my family, my doctors, and I are about to learn about the shocking reality of what’s happening in my brain.
7
Inferno
This headache is killing me.
Dull and throbbing like distant thunder, it overwhelms me, taking over not only my head but my entire being. The clock in my bedroom shows that it’s the middle of the night. I lie in bed wide awake.
Somewhere deep inside my body I feel an approaching storm. All of a sudden, lightning strikes. My stomach turns upside down, nausea overcomes me, and I leap from bed, rush to the bathroom, lower my head over the toilet bowl, and vomit violently. My skull seems to split in half as the headache explodes, then slowly recedes. I feel better but so weak I can’t stand up. Kneeling before the toilet, I stare down at strange pieces of plastic swirling in the water.
I am terrified. It’s surreal, the sight of all this plastic I’ve vomited up.
Why would they have made a pizza filled with plastic? Poison. They are poisoning us!
Last night, June 16, we celebrated my final infusion, a finish line I’d sworn I would cross. I was elated but very tired. I felt as if I’d just graduated from college with the highest grades in my class or crossed the finish line of a marathon. Done with immunotherapy! After twelve weeks of hoping that I could withstand the hardships of this treatment—itchy rashes covering my body, gastrointestinal problems, the loss of thyroid function—it was over. That final hospital visit was the longest ever—over six hours waiting for blood tests, waiting for the doctor, and waiting for the drugs to be delivered from the pharmacy in their transparent plastic bags and then released very slowly, drip by drip, into my veins. Afterward, Mirek and I were both so tired that I couldn’t even consider making dinner. On the way home from the hospital, we did something we rarely do: we stopped for takeout pizza at a
