As I read Sick: A Memoir by Porochista Khakpour, I couldn’t help but think about the normal progression of illness:
- Step One — Symptoms
- Step Two — Diagnosis
- Step Three — Treatment
- Step Four — Cure or Remission
- Step Five — Follow Up and Repeat?
Depending on the disease, each step can speed by or linger. For well-known diseases these steps proceed logically from one to the next. For Khakpour, who was ultimately diagnosed with Lyme disease, the progression took years and continues today.
I didn’t know much more about Lyme disease before reading the book, other than it was caused by ticks. I remember my parents checking me and my siblings for ticks each night when we would stay the week at my Uncle Al’s cottage on the border of Wisconsin and Michigan. I also give my dog a flea and tick preventive each month and do a half-hearted scan for ticks on my ankles after any day hikes I might take.
I have only heard of one acquaintance who has had Lyme disease and know it is hard to diagnose. Until reading this book, I had no idea of the range of symptoms and how devastating it can be. Khakpour isn’t exactly sure when she contracted the disease but has been sick for much of her life.
She has had symptoms ranging from insomnia, tachycardia, problems swallowing, fainting, and convulsions. At times, doctors thought she might have anything from MS or ALS to chronic fatigue or psychological problems. The book also deals with her addiction and drug use, both in college and of prescription drugs, which she took to manage insomnia and panic attacks.
The book circles around doctors and alternative wellness providers who think they know what will cure Khakpour, as well as those that don’t believe her and think she is only making the symptoms up. She talks about the struggle she still has after finding out she does have Lyme disease. There is a controversy around Lyme in that some believe it can be cured with a short-term of antibiotics and that any long-term effects are related to autoimmune issues.
Because she doesn’t know where she contracted Lyme disease the book chapters are organized by the locations where she has lived. This organization is also relevant as her family migrated here from Iran as a result of the revolution, settling in Los Angeles. Her father believed that they would always return to Iran, even keeping packed suitcases in the closet and renting homes here for more than 30 years, before buying a permanent home. This made Khakpour feel as if she really never lived anywhere.
One interesting part of the book is all the times that Lyme came up in her life. She remembers the times she saw signs warning of it, a parent of a boyfriend who had it, a dog who was infected, and warnings that she didn’t heed about ticks. I’m sure if I contracted a disease that caused as much havoc in my life as this did in her life I would remember such details too. It just shows how relevant things become when they suddenly become relevant to you.
At one point, before she knows that she has Lyme, she works with an acupuncturist who referred to her illness as a:
“dragon [who] sometimes slept and sometimes awoke.”
“But what is it? I asked.
She shrugged. “Does it need a name?”
It’s an interesting question. We don’t necessarily need to know the name of what ails us, but according to modern society, insurance companies, and doctors, it seems, knowing the name of the disease is important. Without it, we are lost for how to treat it. Somehow it becomes less valid without the proof of a name.
At the end of the book, we learn that the end is not the end for Khakpour. As a chronic someone with a condition she writes, “illness will be with you as long as life is with you.” She suffered a concussion as part of a car accident she wrote about in the book and since has experienced a reaction to mold from the remodeling of her apartment book.
When I looked at her Twitter feed, she is very sick again and is raising money for her medical care. If you are interested in helping, you can learn more on Twitter.
Originally published at catherinelanser.com