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The purpose of this blog will be to describe aspects of the mental illness journey that my son “Bill” and I took together: the illness episodes, the emergency room visits, hospitalizations, medication issues, and interludes of stability and success. I will share my thoughts about aspects of his treatment that worked, treatment dilemmas that families face, legal decisions, and finally the tremendous strain that we all face confronting a terrible illness with inadequate resources.
In writing about my struggles, I hope to help others to understand mental illness better in themselves, or in their friends and loved ones. Every family’s situation is different, yet there are common elements, including recognizing the warning signs, getting help, understanding the different medications and their side effects, learning the ropes of the mental health system, and taking action to improve care. My ultimate goal is for this account to expand awareness and recognition that we are not alone in this struggle.
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It has been almost three years since I found my son dead in his apartment in Madison, Wisconsin. I keep asking myself if I could have done more. If I could have saved him. His illness and death particularly haunt me because I am a professor of psychiatry at the University of Pennsylvania. Both my research and my clinical work focus on major depression and bipolar illness. Treating bipolar illness is what I do every day. So how could my own son have died from this terrible illness? How could I not save him?
Piecing together what happened with “Bill” involves several intertwined threads. One is the raw power of psychosis to dramatically change a person’s ability for self-direction and choice—in other words, free will. In classical philosophy, free will has two aspects: the freedom to do otherwise and the power of self-determination. In Bill’s case, and for many others with severe psychosis, it was questionable whether he had the power of self-determination once he started into a psychotic episode.
Because his psychosis was brought about by mania, it took the form of grandiose delusions and paranoia. He alternately thought he was auditioning to be Director of the CIA, that his thoughts were controlled by a computer, or that he was leading a rebel army against occupying forces. Some of these experiences naturally terrified him. But many were accompanied by an extremely elevated mood: “10,000 times higher than the highest marijuana high,” is how he once described it. He wrote about his drive to become manic again, to re-experience the high of mania.
This led to a third thread: his desire to avoid taking his medication, partly because of the side effects but even more because he simply wanted to feel better. I didn’t fully understand these different threads—the power of psychosis to undermine self-determination, the desire to re-experience the high of manic mood elevation, and the drive to avoid taking medicines—until it was too late.
Until I read his journal writings about his drive to avoid medication, I didn’t grasp how extremely ill he was, how there were repeated episodes when he was no longer himself once he’d been annihilated by illness. I didn’t realize he had a strong compulsion to invite the illness in again to feel high, something he described vividly as an addiction to mania, not dissimilar to opiate addiction.
