“Sick: a Memoir,” by Porochista Khakpour, is one of a few non-fiction biographies that detail a life of struggle following a diagnosis of Lyme disease, a tick-borne infectious disease that has varying degrees of complications.
First identified by a rash, symptoms can range from feeling tired, to heart palpitations to the inability to move. These issues can be short-lived or last for a lifetime. Antibiotics are the first line of defense but usually are only effective if the infection is caught early.
In 1983, when Khakpour was five, her parents fled Iran with her and her brother. As a child she remembers bombs, sirens, air raids, and threatening planes overhead being part of her life. In their native country, the family had been upper class Royalist Iranians, but they left everything behind and sought political asylum in the Los Angeles area.
Never wishing to seek government assistance, the family lived on the edge of poverty for decades. The father’s high-level education meant nothing in America and he worked at lowly jobs, as did his wife.
In America, Khakpour was a sickly child although she often had to hide it as her parents didn’t tolerate or understand what was happening to her. She suffered tremors, earaches that resulted in near deafness, depression, visual problems and more. Later, she learned that children exposed to significant trauma by the age of three often suffer from PTSD. Khakpour believes that PTSD contributed to her illness. Lyme exacerbated it.
To deal with her illness and anxiety, Khakpour always told stories to her parents and continually wrote stories that came to her throughout her preteen years. Her goal from very early on was to be an author. Now her writing has been published in many major newspapers, journals and magazines. Fellowships, teaching opportunities, and writer-in-residence programs have allowed her to travel and live all over the world. Currently, she resides in Harlem.
Throughout her travels, Khakpour struggled with her illness. She recounts her dependence on friends (rarely family), her inability to work consistently, her dwindling lack of funds because of the cost of her medical care, the occasional loss of the use of her legs, rendering her unable to walk without a cane or wheelchair and her inability to swallow at times, among other symptoms.
Khakpour, a renowned author of two novels and a third on the way is now 40. To this day, she struggles to cover the cost of her treatment and handle relapses. The definitive diagnosis for her was made around 2013 but she suffered for many years before that. She has no idea where or when she picked up the tick that caused her Lyme disease.
Khakpour believes that the medical community still fails to recognize the severity of Lyme, which seems to attack women more than men. She compares it to the skepticism that women and a few men received when they complained of chronic fatigue symptom and fibromyalgia, both now recognized as legitimate illnesses. The author suffered through many misdiagnoses, as did those with chronic fatigue and fibromyalgia. Often she was told she was mentally ill.
This book interested me because I have a friend who has finally been diagnosed with Lyme disease. My friend had to hear family members, teachers, and even doctors say that there was nothing wrong with her, that it was all psychological. It never was psychological, and like the author, she’s spent over six figures and experimented with multiple types of treatments trying to find medical help for this disease.
Very recently, Khakpour was asking friends to help fund her medical bills even though she has received top awards for her books. Her story is an indictment of our current medical system as much as it is a riveting memoir of a very ill, very talented woman.
Harper Perennial: 2018.