The Bumpy Road to Acceptance and the Happiness It Brings

I recently heard the quote “Being an adult is learning to live with disappointment.” I’m not sure I agree with it, but I understand what it means. It means that no matter how amazing our lives are, we aren’t always going to get what we want. And being an adult means we have to learn how to cope with disappointment. 

And yet, I think it’s more helpful to focus acceptance rather than disappointment. I think adulthood is about learning to accept things with grace. Accepting the good things and accepting the bad things. Taking responsibility for the things we need to be responsible for. 

Growing up, I was considered mature at a young age. People always told me I was a little adult or they'd say, “Oh I thought you were so much older.” And that was because I took on a lot of responsibility as a young person and that impressed people. So I grew up thinking I was adult because I could do all these things that were considered “adult.” But the reality was I had no idea what it meant to be an adult. 

Yes, I had no problem taking on responsibility for big projects. I could choreograph an entire musical full of adults. I could tell people what to do and be super organized. But I had very little idea about being responsible for my own life.

Growing up, my parents were great and they were supportive of me in every way. I almost think they were too supportive. I became a grown-up person without ever understanding how to get my laundry done regularly. Or how to clean up after myself in the kitchen. I grew up not realizing that it was an inconvenience to everyone around me if I left my dirty cups all over the house. I was well into my 20's before I didn’t expect my parents to solve problems for me when it wasn’t “convenient” for me to do so. 

My teens and my early twenties are filled with memories of waiting for my life to start. I was in a rush to get out high school and to go to college. I was in a rush to get out of college and get married and get a job. I was in rush to have kids.  

Those years are a blur to me because I kept thinking "This is what I’m doing until my real life begins." I thought I didn’t need to worry about being happy because I assumed I’d be happy when I finally was "grown up." The problem with thinking this way was that, at some point, I realized that life was passing me by and the idea of arriving at the mythical place of “happiness” wasn’t happening.

It wasn’t until my late twenties, after I had a child, that I finally began to understand what it meant to be an adult. I couldn’t not do the laundry just because I didn’t feel like it. I couldn’t stay in bed if I didn’t feel well. Frankly, aside from my mom—who will probably always feel sorry for me—nobody was feeling sorry for me. I was an adult. What felt like overwhelming responsibility and inconvenience to me was simply what millions of other parents had faced all through time: being an adult. 

Even after having a child, I felt as if I still had so much time. I thought there was the possibility of starting an amazing company or becoming famous or doing whatever I wanted at the time. But when I reached my 30's, I started to get an unsettling feeling of dissatisfaction. I realized that most of those dreams were probably no longer a possibility. I began wondering to myself, “If I never do anything more with my life, will I be okay with that?” For several years I was unsure and this led to that underlying feeling of dissatisfaction.

Then I started second-guessing my life. I'd think, “If I'd just done this I'd feel happier” or “If I just do that I’ll feel happier.” But no matter how much I accomplished or tried to become what I thought I wanted to become, the feelings of insecurity and doubt remained. I got a job. I lost the baby weight. I did some professional acting.  I started a dance company. But it was never enough. 

Finally, I realized that nothing I did was going to make me feel better. It clicked inside my brain that to truly feel better I had be able to accept what I am. I had to be able to accept what I am right in this moment. 

To be honest, if I could truly explain how I came to this revelation, I'd probably be a millionaire. The idea that true happiness is to be found by accepting yourself has been around a long time. But no one can tell you exactly how to do it. And it’s not easy. It’s not something you can simply read about and suddenly feel different. Even after I realized that acceptance was the key to my feeling better, it didn’t change everything for me overnight. 

It’s taken years. It’s taken years of wrestling with the concept of acceptance—even challenging the idea—before I finally learned to trust that my life isn’t about what I have done in the past or will do in the future. It’s about right now. That if I can accept where I am right now, then I will be able to accept myself where I am in the next moment. And the next. And the next. 

Even now, there are often times when I'm filled with doubts and fear. When that happens, I can feel myself getting caught in the whirlwind of fighting against what is or find myself wondering “What if?” But the difference is that I'm able to catch myself now. I'm able to slow myself down and remind myself that whatever scenarios I’ve created in my mind don’t matter. All that matters is this moment. All that matters is putting one foot in front of the other; taking one breath after another. 

And while this state of mind doesn’t solve all my problems—I still often struggle—it definitely helps. It helps me accept that the life I am living is the life I am living. I can choose to enjoy it—to really appreciate it—or I can choose to be unhappy. I am choosing to try to be happy. I am choosing to accept what my life is. It doesn’t mean that I'm never disappointed, or that I will stop growing or trying new things and reaching for new stars; but whatever happens...is what happens. And I will choose to try and make the best of it. 

For my mom, becoming chronically ill has truly challenged her ideas about acceptance. Here are her answers to my questions about it.

When you realized that your illness was probably chronic, what was your reaction?

My reaction in the early months and years was denial. Denial, anger, and a lot of self-blame. It was because I thought back then that people didn't get sick and not recover, and the people around me seemed to feel the same way—even if they weren't trying to be judgmental. So I thought, what's wrong with me that I'm not getting better? There was a lot of self-blame which is very common when people first become chronically ill.

My reaction changed when I realized that this illness was just an illness. Even though I was sick, I was still a whole person—just as anyone who is disabled is still a whole person. A person missing a limb is still a whole person. That's when I stopped blaming myself. And when the self-blame went away, so did a lot of the denial and anger. I still get angry every once in a while, but it used to be the way I felt all the time. It was awful. I hid it. I hid it from my kids and my friends. But my husband knew. And I knew.

How long do you think it took before you were able to start to come to terms with acceptance of your illness?

I get asked that question a lot, and it always throws me because it's been 15 1/2 years since I became chronically ill, so it's getting harder and harder to remember. Not harder to remember when I got sick—that's seared into my mind. But it's hard to remember when I started to turn my mind around. 

So, what I do is count backward from when I started writing my first book because that was when the mental healing began. I would say it took about six years to start to accept this illness. I can only hope that my books, my writing, and maybe these interviews help other people not take so long to start moving toward acceptance. Life is too short.

For some people acceptance is the same thing as giving up, or resignation. For you, what is the difference between acceptance and resignation?

Acceptance, as I see it, is acknowledging where you have to start in your life. And for me the main feature of where I have to start is that I'm sick. I'm chronically ill. There's hope in acceptance because you can't take steps to make things better for yourself until you stop and acknowledge how things are for you right now.

So, take a moment to truly acknowledge how you feel and take that as your starting point. For me, that starting point is: "I'm in a body that's sick." Whatever your starting point is, from there, you can open to possibilities of what you might be able to do within the limitations of your illness.

I can't take credit for the expression "start where you are." The Tibetan Buddhist teacher Pema Chodron has a book titled, Start Where You Are, and that title really resonated with me, so I use it to help myself and help others. The emphasis is on start—starting to see possibilities for making changes in your life. Start with an open and mind and an open heart. That's acceptance.

Resignation, on the other hand, is giving up on life. There's tremendous aversion in it and a lot of anger and resentment. It's the attitude of "Life is unfair. I give up. I'll just be miserable from now on." We've all been there. That's resignation. You're treading water when you're feeling that way, and so there's no chance to improve your life.

But there's hope in acceptance.

I went through a resignation phase. But then I realized that, even though I'm limited in what I can do, I'm still alive. You talked about this in your terrific piece above—how you've chosen to be happy. (Sorry for a little detour here, Mara, but I want to comment on one thing in your piece—I don't feel sorry for you. I do worry about you at times though, so that sounds like a more accurate characterization—to me anyway!)

Okay. Back to choosing to be happy. Obviously, no one can be happy all the time but, like you, I've also chosen it as a direction. I choose to find things that are fulfilling to do with my life. I choose to look for joy where I can find it. 

When you're resigned you don't move forward and so you can't even make choices that are likely to make things better for you. That's why resignation is a sad place to be. We've all been there, but hopefully by recognizing the feeling when it arises, we can learn to acknowledge it and move on.

What is your advice for people who are struggling with the idea of acceptance of their current situation?

I have to go to some of the Buddha's teachings here to answer that. Most people have heard of the first noble truth. In it, the Buddha provided a list of the experiences we can all expect in life. And one of the things on that list is illness. There are other things, such as growing old, separation from loved ones, etc. (I'm sure these lessons are included in other religious teachings as well, but I am familiar with Buddhism.)

So I look at the Buddha's list and think, "Wow. Chronic illness is a natural part of the life cycle." That teaching has helped me a lot. It made a huge difference to me to be able to say that this is one of the things on the list that all of us can expect to experience even though it's unpleasant. And so, since illness an inevitable part of human existence, I'd advise people not to fight their current situation. Try to see it as just the way your particular life is unfolding. Illness could happen to anyone. 

It's also helpful to remember that everyone has things about their lives they're not happy with. For those who are healthy, it might be not being able to find love or hating their job. Life offers us many wonderful things but it also has its share of sorrows, and they're on that list from the first noble truth. 

The response to a tough situation should not be resignation because that carries so many negative and painful emotions with it. That said, if it's too hard to move right away from resignation to acceptance, I suggest practicing self-compassion. All that means is recognizing that you're suffering and being nice to yourself about it. So, acknowledge how hard it is to be sick or in pain, and be nice to yourself about it. You can even speak kindly to yourself about how hard it is. In my books, I suggest crafting self-compassion phrases that you can say silently to yourself, almost like a mantra. 

There's no way around it, it's hard to feel sick all the time. Really hard. But it's easier if you can accept it. To do that, take your chronic illness as your starting point and then look around for what might be enjoyable for you. And always, always, be nice to yourself.

Expect the Unexpected: Two Versions of the Same Adventure

One of the many things that has been hard for me to adjust to as an adult is that we have to expect the unexpected. When I was younger, I always assumed that when I grew up, all the doubts about how to handle life would somehow evaporate. But as I finally grew into adulthood, it became clear that no matter how much I planned, no matter how much I thought about things...life didn't always do what I thought it would.

This has caused me endless hours of stress and anxiety. Especially after my daughter was born.

I like to know what’s coming. I like to feel like I have a plan. But there's simply no way to plan for everything. Believe me, I have tried. It ends up being very expensive, very frustrating, and not very effective.

This desire to want to be able to plan for every eventuality reminds me of a trip to Hawaii my family took when I was in middle school. We were vacationing in Kona on the Big Island. We were staying in a condo and had rented a jeep for the week to allow us to do some exploring. Needless to say, the trip took an unexpected turn.

Mara’s memory of the event: 

I was only 12 years old when we took this trip. I can’t say I remember very much. It was a typical family trip, we saw some of the major sites, did some shopping, ate at lots of restaurants. 

One day we were doing some sightseeing—including exploring a valley that was full of lush foliage and beautiful waterfalls. It felt very exciting. My dad was driving and I don't think he knew where he was going. There were no google maps or Siri to help us. I'm sure my mom had a map of the island with her, but there was no street map of where we were because there were no streets. There were no roads. At best they could be described as wide trails.

As we were driving, we crossed a couple of small streams, feeling brazen as we splashed our way across. Feeling adventurous, we encouraged my dad to keep driving. Eventually we came to a river. This was no little stream, it was a bonafide river. There was clearly a strong current as we saw the water swirl by us. We must have discussed whether or not we should try to cross it, although I don't remember it. But there must have been questions: Is the water too deep to get across? Is the car powerful enough? Should we turn around? Should we go for it? We went for it.

We got stuck. 

Like really stuck. The rocky bottom of the river trapped one of our wheels. I don't remember if the engine immediately died, but we were clearly not going to be able to maneuver the car forward or backward. 

Water quickly started flooding into the car. My parents hurried us out. My dad might have carried me because I recall the current being swift. My parents and my brother carefully waded through the water. One of my brother’s flip flops was swiftly swept away from us—we all said it was a sacrifice to the river gods. Perhaps it would bring us good luck. 

I'm not sure if the sacrifice of the flip flop was the cause, but shortly after we evacuated the car, as we stood on the banks of the river trying to figure out what to do, a jeep full of local boys stopped for us. I don't remember a lot about them other than they were clearly amused by the tourists who had abandoned their car in the middle of the river. But they were friendly. In very Hawaiian style, they seemed unconcerned about a bright red jeep in the middle of the river. And they immediately offered to help us. They took a tow line off their jeep and tied it to ours. They pulled our car out of the river.

Just like in the movies, we opened the doors and water poured out of the car.

We were all nervous to see if the car would start. Would we have to somehow try and get a tow company to find us in the middle of valley and tow us out? Was that even possible? 

The car started.

Being only 12, I’m sure there’s a lot missing from my version, but this is one of the only parts of that trip I remember. Once we were able to start the car we were able to laugh about it. I was young so I wasn’t worried about any financial ramifications of drowning a car so what I remember is that it was scary, and exciting, and funny and memorable. I remember how grateful we were to that group of local kids who were so friendly and helpful to strangers.

It was a bonding moment for our family that we often refer back to.

This memory has come in handy at times when trips I'm on have taken an unexpected turn. When something doesn't go the way I planned, I remember that my family once got stuck in a river, and that everything turned out fine. The trip wasn’t ruined. We were able to recover and move on. It reminds me that we are able to handle what we are faced with--even if we can’t prepare for it. 

Toni’s memory of the event:

Our memory of this event differs in several ways, but it was wonderful for me to relive the day through Mara’s description. Several of our recollections differ, but it’s funny that she mentioned her brother Jamal's flip flop floating down the river because that memory has stayed vivid in my mind all these years later.

So, here’s my version of events. We were driving through the lush Waipio Valley on the Big Island in our four-wheel drive jeep and had crossed several streams. When we got to one that was more river than stream, we talked for a few minutes about whether we could get across it. We were having so much fun on this adventure that we talked ourselves into thinking we could make it across. 

We couldn't.

When we got stuck in the middle of the river, the engine went dead, and the jeep started filling with water. We hustled out of it as fast as we could. Thankfully, we could still open the doors even though the water level inside was almost seat-high.

Here’s where my memory differs from Mara’s. It wasn’t the group of locals who pulled our jeep out of the river. It was a very old man. I can still see his face. The local kids she referred to (I’d say they were in their late teens) did indeed stop and help us though. I think there were four of them.

At first they teased us as if we were stupid tourists, but when we agreed with them, they changed their attitude toward us completely. They took us under their wing and began to take care of us. They stayed with us until the jeep started (as I recall, it took a while for the engine to turn over once the car was on dry land). Then they even accompanied us out of the valley (up a steep hill that only a four-wheel drive could negotiate) and helped us sop up the water in the car, using what towels we had. We’d fill each towel with water from inside the jeep, wring the towel out and then do it again. This took a while—maybe an hour. This wonderful group of kids stayed with us and became our protectors.

Now, about the old man. At some point, when we were on dry land but the jeep was stuck in the middle of the river (tilted a bit as I recall), I started walking back up the road to look for help. One family member came with me, but I don’t remember who it was. We came to a rice paddie and there was a man who I’d guess was in his 80s, sitting in a battered old jeep—it looked as old as he did. I asked him if he knew anyone who could help us and he said that he could. He drove us to the river and got a cable out of his jeep. We attached it to both jeeps and then he slowly drove his until it finally pulled ours out of the water.

We were so grateful and he looked so poor that Mara’s dad reached in his pocket and tried to give the man a 20 dollar bill. “No, no, no” he said, refusing to take it. We thanked him over and over...and then he drove off as if it had been no big deal. At some point during all of this, the local kids came upon us in their own jeep and, as I recounted, stayed with us until all was well.

This is one of my most treasured memories from the years of raising Mara and Jamal. My husband and I may have been negligent as parents to have tried to cross that river but, for some reason, I've never felt bad about it. Maybe it’s because, as Mara said, it was such a bonding experience for our family.


Writing about it here fills my heart with love for my husband and my two children.

Waipio Valley

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