One medical crisis is certainly enough to turn your world upside down. But imagine living through four of them. That's what Jessie Gruman did, with admirable resilience and laughter.
The 53-year-old social psychologist has turned her history into a practical and accessible guidebook, AfterShock, for people who are going through the same things she did confusion, fear, and emotional seesaws every time a doctor gave her devastating news about her health. Founder and director of the Center for the Advancement of Health, a non-partisan institute that helps patients get reliable information about their medical care, Gruman talks to TIME about her experiences and provides advice about how to weather medical storms.
TIME: Your personal medical history uniquely qualifies you to write about how to handle a devastating medical diagnosis. Tell us about your experiences.
Gruman: [Laughs] You mean my colored past? Well, when I was 20, I had a Hodgkin's [cancer of the lymph system] diagnosis. I had surgery, chemotherapy and radiation for years. Then when I was 30, I had cervical cancer. When I was 48, I was diagnosed with viral pericarditis [an inflammation of the heart tissue]. One day I was in the gym, the next day in intensive care. When I was 50, my doctor suggested that I get a colonoscopy to screen for colon cancer. So I went, and when I woke up I found out that a big part of my colon and I were soon to be parted. I was just floored. I had no symptoms, and no reason to believe anything was wrong with me. How could this happen again?
What inspired you to write AfterShock?
It never occurred to me that I would ever write a book. But with my most recent diagnosis, I thought, I know how to respond to a bad diagnosis. I've certainly had a lot of experience doing that. And, given what I do, I know so much about how to make medical decisions, and where to get information.
And, still, I struggled so hard with that diagnosis. I realized that all my knowledge didn't save me. And if I struggled, what must it be like for people who know less, and have less?
If you read this book and aren't experiencing a medical crisis, it's a bit like watching a 3D movie without glasses. You look at the advice and say, 'Of course, I know that.' But if you're in the middle of it, you forget. So this book is like a string on a kite for people who are in that place and don't know where to turn.
What do you remember about how you felt each time you received a new diagnosis?
What strikes you is the magnitude of the shock. It hit me every time. You don't know if you're going to live or die. You don't know what kind of pain you're going to face. You don't know if you're going to be able to make those theater tickets on Thursday. You don't know anything. Everything that was certain 10 minutes ago is not certain now.
There is no time in your life when it's more important to use really good information to make a decision than when you get a devastating diagnosis. And I swear to you, there is no time in your life when it's more difficult to do so.