Our December Gratitude List. What's on Yours?

From Mara

We thought it would be nice to use our mid-week post at the end of each month to list a few things we were grateful for that month! If you know me, I tend to be a little (a lot) sarcastic and more of a Angry Little Asian Girl (cartoon character) than a Hello Kitty (also a cartoon character). But as a parent and spouse, I have learned the importance of gratitude. It was always easy for me to see what I was dissatisfied about with my life, but it took me a long time to learn how truly important it is to be able to identify and be thankful for what I have. Simply taking the time to recognize what blessings we have can make each day brighter. I firmly believe that gratitude allows for more grace in our lives.

We would love to hear what you are grateful for this month. Please comment below!

This month I am grateful for:

Medical care. Last week I started to feel sick. I thought I had a cold but by Wednesday night, was very sick and thought I should probably see a doctor. I went to our local Kaiser Urgent Care clinic, was given medicine, and was better in time to enjoy the holidays with my family. 

I am so grateful to have access to this level of medial care. Sure it was a hassle and sure I didn’t want to spend the money on the extra appointment, but I'm grateful I have medical insurance so I don’t have to choose between going to the doctor or feeding my family. I'm also extremely grateful to the smart people out there who invent things that heal us and the dedicated people who manage to get through medical school to be doctors. And finally, I'm grateful that I'm healthy enough to be able to return to health. SO GRATEFUL.

Crock pots. Seriously, the Pineapple Brown Sugar Crock Pot Ham was miraculous. I got the recipe from Facebook. It was ridiculously easy to prepare, not very expensive, and DELICIOUS.

My dad's strange Christmas gifts. So my dad went through a phase where he insisted on buying unique (strange) gifts for the family. Sometimes they were meant to be jokes, but usually it seemed as if he’d gone to some effort to pick something he thought might actually be useful. Several years ago he bought our daughter a scrolling LED sign. At the time, we thought “Oh cool—whatever,” but it has turned out to be a great gift because we use it on important days in our lives and it makes them extra special. 

On birthdays, we type in Happy Birthday and on Christmas we type in Merry Christmas. We can add hearts and stars and it scrolls along all day long, reminding us what a special day it is. And it is unique; when people walk into the house, they say, “Wow that’s so cool!” At the end of that special day, I always feel a little sad when I turn the sign off, but I'm also so grateful to have it. It makes our special days extra special and always reminds me of my dad.

Our very unique LED scrolling sign (And one of my favorite pictures my mom drew!) 

From Toni

This month I am grateful for:

Mara's dad's cooking. I live with that same dad she writes about above. He feels bad that he can't make my health problems go away, so some time ago he decided that what he could do for me was to cook a delicious dinner each night. Every year, the food gets better and better. This month, he was in fine form, cooking everything from fish that melted in my mouth to fried rice and eggs that tasted as if they'd come from a gourmet restaurant. 

But on Christmas Day—also the second night of Hanukkah—he outdid himself, cooking Syrian Jewish food from recipes he found on the web. Dinner featured Keftes (meatballs in a sweet and sour sauce with cherries) and Kibbet Yatkeen (Pumpkin patties—an early version of latkes before they were made with potatoes after they began to be imported from the Americas). The food was so exotic and delicious that our two guests and I were swooning over it...and that was before he brought out the burned caramel custard for dessert. Grateful indeed!

Mara. It was Mara's idea for us to start this blog together. I am so grateful to her for it. It's put us in closer contact than we've been for years. I've learned so much about her from reading what she shares here...and I think she's learned some new things about me. In addition, I love that so many people have written me, saying that a mother-daughter blog is a wonderful and unique idea. Finally, the blog is connecting me with readers of my books and other writing in a new way. I'm so grateful to Mara for coming up with this idea.

Christmas and Hanukkah overlapping. It doesn't happen very often, but when it does, it brings back cherished childhood memories. I wrote about them here: "Hanukkah and Christmas Overlapping: Hallelujah!"

Speaking of gratitude, in 2014, I wrote a short piece for Psychology Today with advice on "What to Do When Gratitude is in Short Supply." If you're interested, you can find it here.

And finally, Mara and I are grateful to all of you for reading our musings.

When the Holidays are a Struggle

From Toni:

The media constantly tells us that the holidays are filled with joy and we should be happy, but for many people it’s a difficult time of year. I’m going to write about one challenge: isolation. It’s particularly a struggle for the chronically ill, but applies to anyone who, for whatever reason, feels isolated from others during the holiday season. 

After my piece, you’ll be treated to Mara’s honest and heartfelt sharing about her difficulties during the holidays: overblown expectations and worry. Then she asks me some questions.

I’m isolated due to chronic illness. Even if family or friends come over (this year our friend Richard and our goddaughter Jessica are coming for Christmas dinner), I can’t stay in the front of the house for the entire time they’re visiting. 

I used to cry after retiring to the bedroom and hearing sounds of chatting and laughter coming from the living room (and I admit that once in awhile, I still do). But over the years, I’ve developed some tools to help me cope with my life as it is.

Self-Compassion. Once in my bedroom, I’m alone so there’s only one person who can be nice to me...and that’s me. So I work on treating myself with kindness about my sadness. I pick specific words that express how I feel and I repeat them silently to myself: “It’s so hard to leave the gathering just when the conversation was getting good”; “It hurts to be alone in my bedroom on Christmas.” Sometimes, as I repeat the words I’ve chosen, I stroke one arm with the hand of the other. Stroking my arm or my cheek never fails to ease my emotional pain.

Try to feel happy for others. I also try to cultivate joy for those who are enjoying themselves. I think about the good time they’re having and try to feel happy for them. If I feel envy or resentment instead (usually in the form of “It’s not fair!”), I just keep practicing. I imagine their smiling faces and the sound of their laughter. After a time, I can’t help but feel happy for them, even if I’m still sad. And sometimes, I even start to feel happy myself, as if everyone is having a good time for me. I recently wrote a piece on feeling happy for others; it concerned an incident with Mara’s daughter (and my  granddaughter) Malia. You can read it here.

Tonglen. This is a compassion practice from the Tibetan Buddhist tradition. In the words of Pema Chödrön, tonglen reverses ego’s logic because we’re usually told to breathe in peaceful and healing thoughts and to breathe out our pain and suffering. In tonglen practice, we do the opposite—breathe in the suffering of others and breathe out whatever measure of kindness, serenity, and compassion we have to offer them.

When I breathe in the sadness and pain of all those who are isolated during the holidays and when I breathe out whatever kindness, serenity, and compassion I have to give them, I’m aware that I’m breathing in my own sadness and pain and that when I breathe out kindness, serenity, and compassion for them, I’m also sending those healing emotions to myself. For this reason, I call tonglen a two-for-one compassion practice—we’re not only cultivating kindness, serenity, and compassion for others who are alone, we’re cultivating them for ourselves.

When I practice tonglen, I feel a deep connection to others who also can’t participate fully in the holidays and so, after a while, I no longer feel alone.

***
These are three practices I rely on when I’m feeling sad about being so isolated from others during the holidays. I hope you’ll try each of them and use the ones that resonate most with you.

May your holidays be peaceful and restorative.

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From Mara:

I don’t have much to add to my mom’s very helpful suggestions about isolation, but I do have my own struggles this time of year even though I don’t have a physical illness, I’ve always found the holidays to be super stressful. So stressful, in fact, that I have very few memories of enjoying them. 

I think I created too grand a vision of what I thought the holidays “should” be and was always disappointed when I couldn’t meet my own expectations. When I was younger it was about wanting more than was realistic, and when I got older it was about wanting to provide more than was realistic. 

I simply expect too much—too much of myself and too much of the people around me. And I don’t just mean presents, I mean the whole package. I want every day in December to feel like a Hollywood movie. I want there to be snow (even though I live in Los Angeles where, when you’re in shorts, it’s hard to feel like it’s a winter wonderland). I want to want to make gingerbread houses. I want to want to go to lots of parties and do amazing crafty things like creating homemade advent calendars. 

But I don’t do those things. That’s just not me. And because of this, I feel like I’m not doing the holidays right. I would love to have some snappy fix to suggest to everyone who struggles in this way, but I don’t. 

In addition, Christmastime is full of worry and anxiety for me. I worry if it will feel “good enough” for our daughter. I worry that I won’t be able to be cheery enough. I worry that people won’t like the presents I give them. I worry about money. I worry about time. I worry that I’m not grateful enough for my fortunate circumstances. It’s an endless cycle of beating myself up about things. 

I  realize that I am doing this to myself. No one is demanding anything of me, but it’s still hard for me to take a moment to just enjoy what is. 

This year, however, I am really going to try. I want to be able to enjoy my family and enjoy whatever Christmas Day holds. Because as I sit here, I’m realizing that no matter what happens, the day is going to be how it is. If the day is amazing, then hopefully I can appreciate it. If it’s awful, then we’ll get through it and we’ll wake up the next day and start fresh. My trying to force the holiday to be something it’s not will not create happiness. 

So I am going to challenge myself this year to let go of my worry. I recently read that an effective way to confront worry and anxiety is to talk to them. So when I feel anxious feelings start to build up, well, I am going to tell them to leave me alone this year. I might actually shout it at myself because I really want to stop blocking my own happiness. I’ll keep you posted on how it goes!

And just a short note to my mom: I hope you know that the fact you can’t participate in family things as much as you wish you could has never changed how we feel about you. And even though you aren’t in the room physically, you are always there in spirit. So if you cry, I hope it’s simply tears for yourself and never tears for me. Because there really isn’t anything you could do to make me think you loved me more. Your being sick has never made me feel like you didn’t love me. If anything, the efforts you have made to be a part of our lives in spite of your sickness have reinforced to me how much you love us. 

Okay, sappy part over.

I would love to hear from you guys about any suggestions you have for relaxing and enjoying the holidays. Comment below!
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Interview with Toni about coping with chronic illness during holidays:

Mara: You already briefly covered some suggestions for making the holidays a little easier for people who feel isolated, so I’m going to ask some questions about other topics:

When you feel bad about not being able to participate in family gatherings, do you feel bad because you are missing out? Or are you feeling guilty—as if you are letting down the family?

Toni: Well, I’d have to say both, depending on the situation. I often feel bad when I’m missing out—either because I can’t go to something in the first place or because I have to leave in the middle of a gathering if it’s at my house. 

For example, when all of the family was here this Thanksgiving, it was huge for all of us because the whole family is so rarely together in one place. When I ran out of gas and started feeling really sick, I knew I’d better lie down. I admit there was a little breaking of my heart to have to leave everyone. Gatherings tend to get more loose and juicy and intimate later in the evening because everyone is relaxed. But it’s also when I can’t visit any longer because I feel so awful. So, yes, I feel bad when I have to leave and miss out on the best time of the gathering.

As for whether I feel bad because I’m letting people down—it depends. I didn’t feel like I was letting all of you down at Thanksgiving because you had each other and were having a good time chatting whether I was there or not. 

But if there are only one or two people visiting, then if I have to leave to lie down I do feel like I’m letting them down because I feel like I should be a hostess. For example, Jazmín, a young woman in her early 20’s lived with us for two years when she was in college here. She’s become like family to your dad and me. She came up from the Bay Area to visit us last Saturday, and I was really sick that day. I could only stay out in the living room for two hours—and even that was pushing it. When I felt like I would pass out if I didn’t lie down, I left. She stayed for four more hours—visiting with your dad. I felt bad that I couldn’t be with her more—so yes, I felt as if I’d let her down. She didn’t feel that way, but I felt that way. So to answer your question, it depends on the situation. Does that make sense?

Mara: You’re saying the two emotions—feeling bad because you’re missing out and feeling bad because you think you’re letting people down—are not mutually exclusive feelings?

Toni: Yeah.

Mara: When you think about the holidays before you got sick, do you think you idealized them? For example, as I described above, I find the holidays very stressful. Do you think you are remembering them in a way that they never were simply because you can no longer participate the way you wish you could?

Toni: Yes and no. No, in the sense that, to be honest, the holidays lost their glow for me when I was 10 because my father died two weeks before Christmas. He was the sweetest and gentlest guy. Perhaps I’ve idealized him, but I don’t think so because everyone said that about him. For years after that, Christmas and Hanukkah (we celebrated both) had this empty feeling for me because I loved him so much and he wasn’t there. It’s amazing that so many years later I can still feel sad about it. So to that extent, I never idealized the holidays. 

On the other hand, when I think about Christmas with you and Jamal when you were growing up, I guess I do idealize it to some extent, telling myself, “All our Christmases together were fabulous and now that I’m sick I can’t do them anymore.” But if I’m realistic about it, our holidays were certainly nice but they weren’t always spectacular. What do you think?

Mara: They were nice, I mean they weren’t amazing, but they were nice.

Toni: For one thing, for many years while you and Jamal were growing up, my mother-in law came from San Francisco to have Christmas with us after my father-in-law died. She could be difficult to be with. She loved me, but she could also be blunt and even mean to me. So there were definitely some years that were stressful at Christmas time even though, since becoming sick, I can think back and convince myself that I’m missing out on what was once a perfect time. It’s interesting how we idealize the past like that.

Mara: Has the family done things (consciously or unconsciously) that made you feel worse during the holidays? (This might help other caregivers avoid behavior that they don’t realize is making their chronically ill family member feel bad.)

Toni: When I first got sick and couldn’t travel anymore, I did feel bad that you and your family didn’t come up here for Christmas. I never felt bad about Jamal not coming because he and his wife Bridgett had an established tradition of going to her parents' house in Escondido. But I felt bad that your family didn’t come up. 

But you know, part of my mental healing (which to a large extent came about through my writing—hopefully I’m helping others, but I’m also helping myself) was realizing that you’re an adult with a family of your own. Maybe you want to establish your own holiday traditions in your own home. And you have your own stresses to deal with and may not want to travel at Christmas. So I got over feeling bad and now it’s fine with me for you to celebrate Christmas however you want to.

In general, my relationship with you is that I’m ok with whatever time you want to give me because you have your own life to lead. You’re a grown woman and I shouldn’t be the center of your life. I might like to be, but I shouldn’t be!

The only other thing I can think of that has made me feel bad at times is not having anyone acknowledge that it's hard to be sick and in pain all the time. It's great to hear these five words: “I’m so sorry you’re sick.” Just having someone acknowledge that it’s hard is very comforting. So that would be nice to hear. That said, I’m not asking that of anyone in the family because you’re so good to me otherwise. But it’s something that a friend said to me a few months ago, and I was shocked at how good it made me feel. So that would be nice for people to say that to family members who are chronically ill.

Mara: Do you have any advice for people who are suffering from health problems and are feeling angry about how their family treats them during the holidays? I know we’re lucky to have a mostly understanding family. But for people whose families aren’t as understanding about what they’re going through, do you have suggestions for how to cope with feelings of anger and can you help them communicate to their families how they’re feeling?

Toni: I’ll start with communicating. It’s important to try and help your family understand what’s going on with you. They’re not mind readers. And even if they know what your symptoms are, they still don’t know what it actually feels like to have them—whether they’re physical or mental. So you should try to explain what it’s like. This is so important that in my most recent book, How to Live Well with Chronic Pain and Illness, the very first chapter is about how to teach friends and family what your day-to-day life is like so they'll understand you better. 

That said, so many people have written to me, saying that their family just doesn't understand. They tell me that they’re told things like “If you'd just get up off the couch and started doing things you would be fine.” Or “If you’re that sick, why aren’t you in the hospital?” So some chronically ill people have family members who are just plain insensitive for whatever reason. 

If that’s true for you, it’s natural to be angry about it. When I start to get angry, I rely on what the Buddha said about it: “When you get angry, it comes back at you like fine dust thrown into the wind.” This is certainly true for me. When I get angry at other people, I don’t know what effect it has on them, but I do know that it makes me feel worse and suffer more. This is because anger feels bad emotionally. And emotions are felt in the body, so anger makes you feel worse all over. You can’t always stop anger from arising, but once you’re aware that you’re angry, you can make a conscious decision not to feed it and make it stronger. 

What’s the alternative to anger? It’s accepting that people are the way they are. Whether you’re chronically ill or not, all through life, some people do what you want them to, and some don't. Some people come through for you, and some don’t. It’s important for your own well being not to take other people's behavior personally. Maybe they can’t accept your illness because they’re afraid they’ll get sick or maybe it reminds them of their own mortality. Most of the time, the things we take personally are about the other person, not about us. They’re about their own demons. So the best thing you can do for yourself is to say, “Yes, this person has let me down, but this is the way they are and I’m going to try to accept that.”  

Lastly, two important things. First, don’t let people who question your illness—whether it’s a mental or physical illness— get you to question yourself. If people tell you that you can’t be that sick or that you’re not really depressed, don’t turn their questioning back onto yourself. You know how you feel, so trust your judgment and do what you need to do to take care of yourself.

Second, if someone is treating you badly, do everything you can to stay out of their presence. You’re not going to change them. It’s not good for your health to be exposed to people who are always questioning you or who aren’t nice to you, so do whatever you can to avoid them. If you need to call on a third party to intervene, do so. It’s an act of self-care and self-compassion to stay away from people who aren’t treating you well. 

Malia and Camden (Toni's granddaughters) Christmas 2014

Our Favorite Authors. Who Are Yours?

Hi blog friends! We thought it would be fun to get a discussion going about some of our favorite authors, those we read to pick ourselves up if we are feeling low, or just to get a little inspired. I know for me, reading is one of the things I have always turned to when I was struggling. Sometimes I immerse myself in fiction and sometimes I read non-fiction. So here are some of our favorite authors. Comment below and share your favorites!

Mara’s favorite authors. It’s hard for me to just pick a few because I love so many authors and books, but here’s a list of the ones I read most often:

Toni Bernhard - Because, well, she’s my mom.

Jane Austen - Because her stories make me feel better. Not sure why.

Francis Hodgson Burnett - Because her stories remind me to work on being a better human.

Eckhart Tolle - Because his approach to living life without ego makes sense to me.

Anne Lamott - Because she makes me feel like it’s ok to not be perfect and I love her sense of humor.

Wayne Dyer - Because he soothes me. I don’t always agree with him, but I find his writings helpful. And he always includes a selection of very inspiring quotes from other writers!

James Patterson - Because it’s easy and fun. I always take a James Patterson book on vacation.

John Grisham - Because I enjoy reading stories about law. And also just easy and fun.

Gretchen Rubin - Here, I am actually thinking of her podcast. I love listening to Gretchen and her sister discuss things. When I’m feeling rumpled, I find listening to them very soothing.

Toni’s favorite authors. Since becoming sick, it’s hard for me to read, so I listen to audiobooks. In fact, some of my favorite authors on this list are here only because I originally got their books based on who was narrating. (My favorite narrators are the late Anna Fields, Lisette Lecat, Bernadette Dunne, Richard Poe, and of course Deon Vozov who narrates my books; I chose her as the narrator because she reads the books the way I would had I the skill.)

I’m limiting my list of favorite authors to 10 so I'm aware that I'm leaving some out. Two of them write non-fiction (Andy Olendzki and Sylvia Boorstein), and two of them are on Mara’s list (Anne Lamott and Jane Austen).

Here goes:

Anne Lamott – Because of the reasons Mara gave.

Jane Austen – Because she was such a good writer (“A mind lively and at ease, can do with seeing nothing and can see nothing that does not answer.”) She was a hopeless romantic, and my heartfelt wish is that her books gave her solace since she never found romance herself during her short life.

Harper Lee – Because she wrote To Kill a Mockingbird and it changed my life.

P.D. James – Because I love how she develops each character in detail. And I love that she starts so many sentences with the word “and.” It’s given me permission to do the same in my writing. 

Alexander McCall Smith – Because his books are funny, soothing, and good company when you’re alone like I am much of the time. I love his characters, from Mma Ramotswe in Botswana to poor little Bertie in Edinburgh who’s saddled with the insufferable Irene as a mother. As a bonus, Lisette Lecat narrates his No. 1 Ladies Detective Agency series.

Andy Olendzki – Because he’s had the most influence on my understanding of the Buddha’s teachings.

Sylvia Boorstein – Because she’s the best storyteller I know.

Donna Leon – Because her Guido Brunetti mysteries are well-written, suspenseful, and full of eccentric characters. I’ve listened to her books so many times that I feel as if I’ve been to Venice. As a bonus, Anna Fields is the narrator.

Marcia Muller – Because her Sharon McCone mysteries take place in San Francisco and its environs, so I know all the settings. As a bonus, Bernadette Dunne is the narrator.

And last but not least:

W. Somerset Maugham – Because his novels speak directly to my heart.

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.

Introductions

Hey everyone, it's Mara. Welcome to the HOW TO BE blog.

For our first post I thought I would just do a brief introduction about me and my mom. Many visitors will be familiar with my mom, Toni Bernhard, author of How to Be Sick, How to Wake Up and How to Live Well. For those of you who don't know her, she was the Dean of Students at the UC Davis Law School, a mom and grandmother when she was suddenly struck with an illness on a trip to Paris 15 years ago. She has never recovered. Years of doctors visits and research have gone by and she has never gotten a definitive diagnosis or "cure." She wrote about her experiences coping with chronic illness in her first book, How to Be Sick, detailing her struggle with sickness, being forced to retire from work decades earlier than she would have otherwise, and the hardship of missing out on most social aspects of family and friendship. She's very excited that her publisher has asked her to do an expanded second edition of How to Be Sick. It will be published in Fall of 2018 and she's really enjoying updating it.

Her years of Buddhist study and her kindness and compassion give her a unique perspective on life. She is truly one of those people who make you feel better to be around. If you are interested in reading one of her books, you can visit her webpage www.tonibernhard.com.

About me—my name is Mara. I live in Southern California with my husband and my teenage daughter. I was adopted by Toni and Tony from Seoul, Korea in 1977. (They were awesome parents in case you were wondering.) And although I don't suffer from chronic illness in the same way my mother does, I have spent years researching and reading books about how to deal with life. Life has always felt a little bit mysterious, often complicated and—well, for me, difficult. I have always felt as if I wanted to be happier, I wanted to be more successful, I wanted to be popular, I wanted to be left alone, I wanted to be less tired, I wanted to be less bored, I wanted to be less busy...I just always wanted to be something other than I was. Starting in high school I began suffering from severe depression and as an adult I suffer from depression and severe anxiety. So my search for relief from my various struggles is never-ending.

Now that I'm older, I'm coming to grips with the reality that there are no magic answers, that there is no easy fix. And that even if you don't have obvious hardship, you can still struggle. And that struggle is still valid even if nobody else understands it. And there have been times when I really struggled with the thought that I wasn't sure I could make things better for myself. But when truly faced with the stark choice of survive or don't survive, I chose survive. And once I chose to survive I had to decide if I wanted to survive in misery or try and find another way. I am choosing to find another way. 

I'm inviting you to come with me on my journey because I don't have answers. There's no ending to my story yet. so hopefully you can help me and I can help you too. Fortunately one of my coping mechanisms has been to turn toward humor and sarcasm, so the journey will at least be funny.

Facts about Toni: Breast cancer survivor, Sociology major, law professor, married for a long time, obsessed with her dog Scout, artist, has literally crocheted me about 100 scarves, has a left-handed son.

Facts about Mara: Cut my own bangs every week, Political Science major, dance teacher, married for fewer years than Toni but still for a long time, have two cats and a dog but would also like a pig and a goat, own at least 100 scarves, have a left-handed daughter.

So one of the things we want to do with the blog is give visitors a chance to ask Toni (or Mara) questions. The questions can be about chronic illness or not, about her books or not—anything! Please email us at bloghowtobe@gmail.com or comment on our posts. Let us know what's on your mind!

1996 at Mara's Wedding