How To Be Sick

Our first official blog post. (It's the second post, but the first topical one.) It made sense for it to be about How to Be Sick, the book that brought my mom's story to the public. To give you a little history about the book, my mother, Toni Bernhard, was always an amazing writer. She has a gift with words that makes you feel like you are living the experiences that she is describing. As a law student and then a legal writing professor she learned impeccable grammar (something I have yet to learn much to her dismay) but there's also a compassionate and loving quality to her writing that makes her stories extremely accessible. Growing up I never doubted that she would eventually write a book. I never imagined it would be a book about being chronically ill.

When my mom first got sick in 2001, it was just 5 months after my daughter was born. The Tonies (my parents are named Toni and Tony which should probably be a whole blog on its own) went off on a trip to Paris and when they came back, mom was sick. They assumed it was a virus and that she would get better. But she didn't. In fact, she got worse.

Months went by and I was distracted by being a new mother and a little out of touch because I don't live near my parents. The knowledge that my mom was still struggling with this mysterious sickness she'd picked up in Paris floated around in the back of my mind, but I just thought she'd get better. I figured they would discover what was wrong, she'd take some medicine, and she'd get better. After about 18 months it became clear that wasn't going to happen.

Becoming sick challenged my mom in every possible way. It still does. It limits almost every aspect of her life. But true to who my mom has always been, she has never stopped looking forward. She has days that are harder than others, but she still challenges herself. She doesn't give up. She learned to love listening to opera. She learned to love watching tennis. She learned to crochet. She learned to embroider. She created a network of friends across the globe through email and Facebook.

And she wrote books.

I'm guessing I wasn't the only person to suggest that she write a book, but I'm going to take credit for it because I very specifically remember telling her she needed to write a book and she needed to try and have it published. I firmly believed that her story about being sick needed to be told. I knew that she could make people feel better by sharing her experiences. Being a person who naturally expresses herself with writing, she admitted to me that she had in fact been keeping notes about how to cope with being sick. Those notes became the basis for How to Be Sick.

Buddhism was a practice my parents developed when I got older. Even though I no longer lived with them, I could see the changes it made in their lives. My mother, always kind and loving, was more peaceful. She became more accepting. She was more skillful at offering insights and suggestions. And while the book isn't really about being a Buddhist, the knowledge that she learned from her many years of practice definitely provides a nice framework for how to handle the obstacles she faces from being sick. 

I believe one of the reasons my parents eventually ended up practicing Buddhism is because of its non-judgmental approach to the world. My parents were hippies. They've always believed in being open to people and experiences. Buddhism allows her to do that while also giving her tools to accept the everyday grievances we all face.

The books have touched many readers over the years. Even before she was an author, my mom was the type of person my friends just liked being around. If you're having a bad day, you want my mom to be around to boost you up. She'll love you up and make you feel better. So the subject of creating a blog has come up before, but was always dismissed as too taxing for my mother to handle. She does write articles for Psychology Today, but the thought of tackling a regular blog felt like too much of a commitment. 

Then we came up with the idea to work on a blog together so that I could handle the bulk of the work and allow her to participate in a way that wouldn't feel too burdensome.

One focus of the blog will be my interviewing her, using questions from readers so that they can hear directly from her. We thought we'd start with an interview about her book: How to Be Sick. Enjoy!

As always, feel free to email us at bloghowtobe@gmail.com with questions you might like to have answered in future blogs!
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Interview with Toni about How to be Sick:


Can you describe some of the symptoms of your illness?

Start with how you feel when you're extremely jet-lagged: sluggish and exhausted. Add to that the feeling that you have the flu without the fever and without many of its acute symptoms such as a sore throat. But you have aches and pains and very little energy. Think of how, when you have the flu, you can’t stray far from the bed and how the smallest tasks and interactions wear you out, and how you sleep 9 hours and still wake up feeling sick. So, combine jet lag and the flu and that’s me. 

So what happens when you get an additional sickness?

I rarely get an acute illness. For that reason the main theory of what's wrong with me is that my immune system is constantly on. It reads me as sick, even though I may not have an active virus. They call it “up-regulated.” As a result, I'm able to fend off most of the acute things that come my way. I’ve been sick for 15 years and rarely have had an acute illness. But when it does happen, I call it “sick upon sick,” and it's awful.

Why did you decide to write a book?

I didn’t set out to write a book…as you mentioned, I’d just been taking notes on what might help me adjust to the shock of my life having been changed so dramatically.  You were, in fact, the first person to suggest I write a book. I'd made some friends on the internet who were also chronically ill—the internet is great for people who are housebound—so I sent the notes to them. They loved them and told me, “This is a book!” So I took their (and your) word for it and started organizing the notes, coming up with chapter titles and the like. And it’s funny because when I was originally just keeping notes, I'd called them “How to Be Sick” so the title of the book came very easily. The titles for next two books were so much harder to come up with.

How did you write it while being sick?

It was hard. And there were days when I would start crying and think to myself "I can’t do this." What I did was to put my laptop on a stool next to my bed and keep a notepad nearby. Then I'd grab one of them and write when I wasn’t feeling too sick. Sometimes just for five minutes if that’s all I could do that day. That’s how I still do my writing today.

One thing that made it possible to write How to Be Sick was that during any given session I only wrote about a subject that I was inspired to write about at that moment. Of course, as I neared the end of the manuscript I had to fill in some of the gaps. For example, there's a chapter in the book on isolation and loneliness, and that was hard for me to write about so I kept putting it off. But as I neared the end of the manuscript, I finally had to force myself to compose it to complete the story. But in general I don't force myself to write in a particular order or on a particular subject.

How long did it take you to write the book?

If I don't count the notes I made and just count from the time I said, "Now I'm going to write the book," I would say about a year. Tony, my husband, thinks it was closer to 18 months. And then of course the publishing process takes another two years or so.

How did you get it published?

That was not easy. I had no connections and no name as an author. But I'd given the manuscript to Sylvia Boorstein who is a Buddhist teacher and a good friend. She loved the manuscript and, as a published author herself, was kind enough send it to three different publishers she was connected to, along with a cover letter. All of them rejected it, saying there wasn't a market for a book on chronic illness.

I thought well, that's that. But I had another friend, Shaila, who'd had a book published by Wisdom. She loved the manuscript and asked if I'd like her to send it to her editor. I said “Sure” not thinking anything would come of it. Soon afterward, her editor (who became my editor for my first two books) called me and said he really liked what he'd read so far and he'd be back in touch in a couple of days—as if I had publishers lined up, vying to publish my book. So I really got lucky because normally preparing a book proposal is a huge amount of work. For example, you have to research all the books in your category and explain how your book is unique. 

How would you describe the book?

It's a practical book. As much as the term is overused, I guess I'd have to say it's a self-help book. It's organized around my understanding of the human condition—its joys and its sorrows. And it contains dozens of practices to help people live a life of purpose and joy no matter what their circumstances. Some of the practices come from Buddhism, but I made up many of them (which is why the subtitle says it’s Buddhist-inspired—Buddhist-inspired usually meaning “I made it up”!).

Do you have to be Buddhist to understand it?

No, and that's been such a surprise and joy for me. I'd say that about 90% of the peole who write to me about how much the book has helped them are NOT Buddhist. People say things to me like “I’m Methodist but your book helped me so much.” I think it works for everyone because it’s not a religious book. In fact, I don’t practice Buddhism as a religion but as a practical path to help me live well. The Buddha was a human being…just like us. He wasn’t a god even though over the centuries some cultures and schools of Buddhism have turned him into one. But he wasn’t. So, to me, Buddhism doesn’t conflict with any religion.

Have you ever practiced what you would consider a religion?

I guess not. My parents were Jewish, but they weren't religious. They were so not religious that we weren’t even members of a temple. There was a short period in high school when I rebelled against not being raised in a religious way. I put aside a specific time each day to read the Old Testament and I went to temple with one of my friends. But that's the only time I recall when I thought of myself as being religious.

Are you surprised by the number of people who aren't chronically ill themselves who relate to the book?

At first, I was completely surprised! I’ve come to realize, though, that many of the struggles faced by people with health problems are the same struggles that others face: money issues, relationship issues, not getting what we want issues!

Is there one particular part of the book that people write to you about the most?

Yes. It's the fact that it never occurred to them until they read How to Be Sick that it's not their fault that they have health problems (mental or physical) and that they deserve self-compassion, not self-blame. Many people tell me that until they read the book, they’d never thought of treating themselves with kindness and compassion. They'd been plagued with feelings of guilt and anger toward themselves, but reading my book allowed them to feel compassion and understanding for themselves for the first time.

That sounds pretty amazing.

I know. It really is amazing. Many people have said that How to Be Sick has become their bible in that they leave a copy by their bed and read it regularly to help them with their struggles.

How does that make you feel?

Really good! Sometimes I think to myself that it almost makes me feel thankful that I got sick, so that I could be of help in this way. Every once in a while I actually do have that feeling—that if I hadn't gotten sick I never would have been able to help the people the way I have. But I have to admit that I would like to wake up tomorrow morning and not be sick. 

We are going to be doing a separate blog about the role of caregivers, but is there anything you would like to say about dad and how this has affected him?

I would say this, and I'm sure he wouldn't agree with me. I think that being mostly housebound for 15 years has been harder on him than on me. Think about all the experiences that couples share. It's not just that I can't go out, but he can no longer go out and have his partner along to experience it with. 

We can't go to family events together, and we can't travel to new places. And it's not just that we can't do the things themselves, but we no longer have them as shared experiences to talk about and to exchange ideas about. We're not creating new memories about the world outside the house. It's changed his life as much as it's changed mine. 

Was one of your motivations in writing the book to get him to understand what you were experiencing?

No, I didn’t think of it that way. He sees the effects of my illness every day. So he knows what I'm going through. I didn’t need to write the book for him to understand. He can see how sick I am. He knows all the nuances.

Do you think though that’s partly because you two have a special relationship and he’s so compassionate and understanding? Maybe other people aren’t as fortunate to have as understanding a spouse or partner.

Yes. Absolutely. I know how truly fortunate I am. I recognize that a lot of people don't have the support from a partner that I have. I've heard from many readers who've been abandoned by spouses. Sometimes their spouses abandoned them with small children. I appreciate how fortunate I am to have a spouse who supports me, and I also appreciate that we don't have to worry about having the money to pay for our home or for my medical bills. So yes, I am extremely lucky and my heart goes out to those who don't have the same support and I do.

If you had to identify one main thing that you hope people take away from reading How to Be Sick, what would it be?

Everybody's life takes unexpected turns and nobody's life turns out exactly as they expected it to or wanted it to. But you can take the life you've been given and, using the practices in the book, learn to be at peace and find joy in your surroundings. Not every day perhaps, but peace and joy enough. That's what I hope people will take away from the book.

For more about How to Be Sick, please visit www.tonibernhard.com.

Toni's books translated into several different languages.