A few months ago, I had an eerie but rich experience: I listened to my own book being read to me. It took 2 1/2 years, but finally, I was able to make How to Be Sick available as an audio download. I chose Deon Vozov as the narrator because she reads the book the way I’d read it had I the skill to do so. As Deon recorded each chapter, she sent it to me in an audio file. I would simultaneously listen and read along in the book. I noted any corrections and sent them to Deon in an email. When I’d get the corrections back from her in an audio file, I’d listen and read along again.
I’ve opened the book many times since it was published, but I’d never read it cover-to-cover (let alone read it while listening to it at the same time!). It was an intense experience, not without tears. I’m sharing what I learned because I hope it will be valuable, not just to those who’ve read the book, but to others who might recognize experiences we share as members of the community of the chronically ill.
1. I’d forgotten how scared and traumatized I was the first few years of the illness. I was afraid I was ruining my family’s life. I was afraid that all my friends would abandon me. I was afraid I’d lose my career. I was afraid that people wouldn’t believe how sick I was. I was afraid that no doctor wanted to treat me. At times, I was afraid I might be dying.
As I listened to Deon read, I realized that many of the practices I wrote about in the book would have helped me through those terrible early years had I only thought to try them. For example, the fear and the trauma would have been eased had I treated myself kindly and with compassion rather than blaming myself for getting sick. In addition, had I been more attuned to the truth of impermanence (what I call Weather Practice in the book), I wouldn’t have been afraid that the worry of the moment was about to become a permanent part of how I’d feel from then on. And I could have benefitted from mindfulness practices that help keep the mind from wandering off into stressful stories about the past and the future.
As for those many things I was afraid of when I first became chronically ill, some of them indeed came to pass. I did lose my career and I lost many of my friends. But I survived…and even thrived, thanks to a few people in my life, thanks to the loving support I get on the internet, and thanks to the Buddha’s guidance. (Side note: The Buddha was a human being, like you and me. I don’t “practice” Buddhism as a religion. I “practice” the many tools he left us—as one human being to another—to help alleviate suffering and to help us find peace and well-being in this life.)
2. I didn’t realize how many times I wrote about crying—even sobbing. No wonder people write to me, saying that they wept at certain passages. I wept too as I listened to some of those passages—like the place in the book where I reprinted a letter I wrote to four friends who have since dropped out of my life. In the letter, I tried to explain my illness to them and how, even though I didn’t look sick, I no longer could do many of the things we used to enjoy together. As I listened to Deon read, I didn’t weep out of sadness over the loss of those friends. I’ve accepted that. No, I wept for the Toni I was when I wrote that letter—a person who was desperate and panicked that she wouldn’t be able to hold on to her friends, and a person who thought it was her fault that her life had taken such an unexpected and radical turn.
3. I’d forgotten that the book was so personal. I couldn’t believe that I wrote about peeing into a thermos in my office because I was too sick to make the trek to the bathroon at work! As I listened to Deon read what I shared about my life—particularly how unkind I could be to myself at times—I understood why people tell me that reading How to Be Sick is like reading about their own lives. The book can get “down and dirty” about life with chronic pain and illness…and it’s not always pretty.
4. I gained a new appreciation for the ever-presence of impermanence in our lives. I wrote about new friends I’d made since becoming sick, but some of those friendships have already changed—a few have even faded away. Yet, new ones have formed. And I described how I got to know other people who are chronically ill by leaving comments on their blogs (I didn’t have one myself at the time). There’s only one brief mention of Facebook, but in my life at the moment, along with this blog, Facebook is the principal way I connect with people who live day-to-day with chronic pain and illness.
On the plus side (I like to say that the law of impermanence can be our friend), I realized as I listened and read along, that my health has improved somewhat since the book was published. I still have those “lucky-to-even-be-able-to-post-on-Facebook” days and, come evening— like clockwork—I’m still in the “stun gun” state I wrote about in the book. But I’m rarely entirely bedbound.
I spend more time in the living room and I can visit for longer when someone comes over. My husband Tony and I sometimes go to an espresso place in the afternoon or even to an early dinner. It’s small stuff but it’s definitely a welcome change in our lives. Tony no longer has to shoulder the entire burden of hosting people when they come over, and he sometimes has company when he goes out into the world (so long as he stays in Davis!).
5. Finally, I realized how much I wrote about in the book is still true for me today. This is because, well, chronic means chronic. In the last chapter, I wrote:
Some days I cry out: “I don’t care if this is the Way Things Are. I don’t want to be sick!”
I still sometimes fight the Way Things Are and cry out “I don’t want to be sick.” At least when this happens, there’s a certain book I can look to for help.
© 2013 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)
Visit www.tonibernhard.com for more information.
You might also enjoy my lighthearded piece: "Top Ten Thinks I Learned from Writing Two Books."