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Acceptance opens possibilities for peace, even for us sick chicks…
An interview with Jenni Grover and Toni Bernhard, about acceptance of chronic illness.
Toni Bernhard is an author, blogger for Psychology Today, and chronic pain and illness advocate.
She is the author of three incredible books, two of which focus on living with grace and joy despite chronic illness (which includes chronic pain), and one which focuses on the Buddha’s path to awakening to a life of peace and well-being. They are: How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015), How to Wake Up: A Buddhist-Inspired Guide for Navigating Joy and Sorrow (2013), and How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers (2010).
Toni has been a practicing Buddhist for over 20 years. She was also a law professor at the University of California—Davis for 22 years, serving six years as the dean of students. She writes in a conversational style, with the intention of helping everyone, regardless of circumstances, learn to live with compassion, joy and purpose. She lives in Davis, California with her husband and their endearing, if goofy, gray lab named Scout.
Jenni: Today we’re talking with Toni Bernhard. She was a law professor until 2001, when she got an acute illness that turned chronic. It forced her to give up her career; what she did instead is to write a book called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, and two subsequent books as well.
I have to tell you, I adore this book. I’ve read it twice, I recommend it to everyone I know who has illness—even some people who don’t who are just caregivers or who love people who are sick—I think it’s one of the best tools I’ve ever read. So I’m really excited to welcome Toni today, and we’re going to talk about acceptance, which is the subject of Lesson One of ChronicBabe 101. Welcome Toni, I’m so happy to have you here!
Toni: Thanks Jenni, and thanks for recommending my book to people, that’s very sweet.
Jenni: I always love to tell everybody about the tools I use that I think work really well. And I’ll just point out, I know a lot of people who aren’t Buddhists or who don’t study Buddhism who’ve read the book and love it. So don’t feel like you have to be a Buddhist to read the book and get a ton out of it because in fact, I think anyone can get great benefit from it.
Jenni: Today we’re talking about acceptance, which is really a fundamental aspect of being a ChronicBabe, of living well in spite of chronic illness. Toni, you’ve really had to accept an entirely different way of life since you became ill so many years ago. When you first got sick, did you even think about acceptance? Did you think acceptance was a possibility for you?
Toni: Well, you know, I have to be honest and say no. And I had 10 years of Buddhist practice behind me and yet when I first got sick, I was in a state of denial for years. I don’t think that’s unusual. I think it just illustrates how hard it is to accept that the life you were living and your plans for the future sometimes just have to drastically change.
So the first few years of being ill, when I didn’t recover from what we thought was this acute illness, I would go to bed at night and try to will myself to wake up feeling healthy again. It was like hitting my head against the wall, because there are some things about life we just can’t control.
And it took me, I don’t know, somewhere around four years—a long time—to realize this was a losing strategy, that all I was doing was adding mental suffering to the physical suffering of the illness. I think when I saw this, that’s when I began this process of accepting my new life.
Jenni: I totally relate to that. I spent many years after my diagnosis with fibromyalgia fighting it, and fighting really hard, because I’m tough, and I did not want to feel like I was giving up. I felt like acceptance was kind of giving up or giving in to the illness.
How do you see acceptance? Do you feel like it’s… I don’t think it’s about giving up… but I don’t want to put words in your mouth.
Toni: I don’t think it’s about giving up either. The right words to describe giving up would be resignation or indifference, and that attitude and state of mind carry aversion with them, which is a turning away from our life as it is.
In contrast, acceptance means opening to our life as it is. When we say to ourselves, “I just give up,” that kind of negative attitude makes it difficult to make constructive changes to our life, because we’re refusing to look at our life as it is right now. So I feel strongly that we can be accepting of the state of our health and be proactive in continuing to look for treatments, find new doctors if we need to, and also be proactive about figuring out what new things we can do with our life as it is now.
And if you come from a place of acceptance, there’s a certain calmness to it, and that makes it easier to make wise decisions and to take constructive action.
Jenni: That’s definitely the experience I’ve had. I know when I fight it, when I’m angry about it, I tend to be more irrational and I tend to leap at things, or feel and act out of fear and frustration, and make choices that are not the healthiest.
Toni: I think it’s just not a linear process where one day you wake up and say, “Okay! I accept.” You know, I have my ups and downs, I have my bad days, but at least I know what to work on. I understand that resignation, that kind of negative attitude, doesn’t do me any good. And so at least I know to try to cultivate acceptance in the face of that. But I still have my ups and downs.
Jenni: Well, we’re all human. I wrote a piece about it on ChronicBabe.com a few years ago and got a crazy reaction, lots of people either really agreeing very strongly or people saying that they strongly disagreed. I know for myself, though, the moment of time in my life when I really came to accept that I wasn’t going to get better and I was just going to learn to work with it and still live a great life, it was very powerful, it really changed me in a very profound way.
I’m wondering why, you think, this happens to us, because I know it happens to a lot of people. Why is acceptance such a powerful concept for those of us with chronic conditions?
Toni: I think it’s so powerful because, bottom line, we have the life we’ve been given. This is our life as it is. We’re in bodies and bodies are subject to illness and injury; it can happen to anyone and it can happen to anyone at any age. And so, for me, the only peace to be found is to start where I am. It’s a wonderful expression; it’s the name of a book by Pema Chödrön, Start Where You Are: A Guide to Compassionate Living.
Well, where am I? I’m in a body that’s not in good health and I’ve found that when I spent all my time fighting that, my whole life was subsumed with thinking about my health. It becomes this total identity; if you spend all your time fighting what is, refusing to accept your life as it is, you kind of become what you’re fighting. I was this sick person; that was my total identity: “sick person.”
Jenni: I know that you know, you’re so much more than that.
Toni: Right, but we don’t see it when all we’re doing is fighting it. And if we also have a chronic pain condition, it’s the same kind of thing. We feel as if we’re nothing but the pain, because we’re spending all our time fighting it.
When we accept it as part of our life, then we begin to see that we’re much more than that. I mean, look what you’ve done, Jenni! I find it hard to believe that you could have done everything you’ve done with this big community and all the things you do, if you weren’t coming from some level of acceptance of your health difficulties. Otherwise you’d just be spending your days as “person in pain,” consumed by that.
Jenni: Yes. Unfortunately, I encounter so many people like that, which is a big part of why I’m trying to do more outreach work like this, because there are so many people who get stuck there. And the thing is, I understand that because I’ve been there before myself, I definitely understand it. ChronicBabe came to be 10 years ago, and I was diagnosed with fibromyalgia almost 18 years ago. So it took me quite a while to really get to that place and be able to speak openly and try to help people.
So what do you think is one of the first, or the first, steps people can take toward acceptance? Especially people who are reading or listening to this for whom acceptance may be a really new concept?
Toni: It’s a great question because, you know, we’re talking about acceptance opening up possibilities. But the question is “well, how do you get there?”
When I don’t know what to do about the stressful thoughts running through my mind or what to do to help myself, the first thing I do is to treat myself with compassion. Even if it’s just compassion for the fact that I can’t get to acceptance, it’s amazing how directing compassion at ourselves can soften everything, and out of that can flow the beginning of acceptance.
I’m going to share something, which is that I do a lot of talking to myself. I don’t talk out loud, but I do talk to myself. And I talk to myself with compassion, because it’s not my body’s fault that I’m sick—this just happened to me.
So I might say something like, “It’s so hard to have to miss this wedding that you really want to go to when all your friends and family are going.” I’m using this example because it’s something I’m working with right now. This coming weekend, I can’t go to a wedding because, even though it’s nearby, it’s in the evening. Sometimes I can go somewhere during the day for an hour or two, but by the evening, I’m sick in bed.
And so, when I speak to myself that way, it’s like I’m acknowledging the sadness, the unhappiness, and that’s the first step toward acceptance.
To me, if you’re turning away from that, and trying to pound it out of your life—“I’m not sad, I’m not!”—then you don’t get to acceptance. You have to see it and treat it with compassion, which means treating yourself kindly, over all the things that are troublesome for you, and that are making you unhappy and making you sad. And when you do that, that’s when the crack of light of acceptance starts to shine through. That’s how it works for me.
So I would tell people the first thing to do is to start by treating yourself kindly about what’s happened with your health—it’s not your fault. Treat yourself kindly and with compassion. That, to me, is the first step toward acceptance.
Jenni: Such a powerful idea. That’s something that, I think, a lot of us, in moments of intense pain or struggle or sadness, can use. It can be really hard. I know for myself, I’ve definitely had times where I beat myself up and it’s so unproductive and unhealthy.
It sounds like what you’re talking about is, there’s a difference between acknowledging the sadness of something you can’t do and wallowing in it. You’re not talking about wallowing.
Toni: Right, I’m talking about acknowledging that the sadness is present. Sadness and unhappiness are among the myriad arising and passing thoughts and emotions that flow through the mind. We don’t have to think of them as a permanent part of who we are, because they’re not.
One of the universal laws that all religions and all scientists recognize is impermanence, this ever-changing nature of what arises in the mind and passes in the mind. But we sometimes tend to grab onto something and think, “I’m always gonna be sad, I’m always gonna be this way.” And so, simply try to recognize the sadness and, then, having recognized it, try not to grasp onto it, but see that it’s only temporarily there and treat yourself kindly about it: “My dear, sweet body. It’s so hard to be sick.”
I know this is easier for some people to do than for others. A lot of people find it easier to be compassionate about others than they can be about themselves. But it helps to recognize that the inability to be self-compassionate is just conditioning, maybe from something your parents told you, such as “don’t ever complain about pain.” You may have internalized that conditioning, but you can change.
We change our conditioning every time we treat ourselves kindly. It’s as if we’re laying down a new and fresh track in our minds. And each time we treat ourselves kindly, it’s easier to do the next time.
You have to just dive in and start doing it, even if it feels fake at first. Do it. Because you’re changing yourself into someone who is able to be kind and loving to themselves. And that opens the door to acceptance.
Jenni: I hope everyone reads or listens to this. Really, of all the chapters, I’m just feeling like this is so powerful, and I guess that’s why I made it the first lesson in ChronicBabe 101, because I think that everything about living the most awesome life, in spite of illness, comes from this as its foundation.
Toni: I do too.
Jenni: When people approach you—I know they do, especially now that you have published books, you’ve got a very public face—do you have favorite suggestions for people when they’re kind of exploring the idea of acceptance, books they can read or podcasts or even strategies for practicing it that you like?
Toni: Well, I can share some strategies. I know there are wonderful books but I don’t have any to recommend offhand because it’s difficult for me to read, so I mostly listen to audio books and fiction, that kind of thing.
But I do feel very strongly that if someone is starting to explore this idea of “how can I accept what I don’t want,” it’s really important to be patient with yourself. It kind of goes back to what I was saying about how, for some people, it’s hard to be compassionate towards themselves. Well, because acceptance flows from that, for some people, acceptance may be long in coming.
But that’s okay. Be patient with yourself, treat yourself kindly, the way you would if you were trying to teach something to a child. Recognize that it takes time because you’re developing new skills, and then relish each little victory. Be content with baby steps.
So if there’s just one moment during the day when, maybe you’re lying on the bed, and you’re just having this moment of feeling, I’m okay with my life as it is right now. Even though I’m in pain. Relish that little victory. And know that, as I said before, that this is setting the stage for the next moment when you’re going to feel that way. Be patient, take your time, and be content with baby steps.
Jenni: You and I both share a pursuit of Buddhist learning, and I know for me, acceptance is a big part of that and my spiritual practice has really helped me come to a state of acceptance.
I think there was something similar for you. I’m wondering if you could talk about how your faith or your spirituality plays you’re your work on acceptance. And also, I’d like to think about people of other faiths who are reading or listening, and how they may find resources there too.
Toni: You know, people talk about Buddhism and there really is not a thing that is “Buddhism.” There are dozens of different schools of Buddhism, and I don’t actually consider it to be a religion. To me, it’s a practical life path. It was only given the label “religion” when it was discovered by Westerners.
The Buddha himself avoided metaphysical questions. He refused to answer them, and that’s why his teachings are compatible with any other faith. He was interested in our day-to-day life, and what we could do to ease our suffering. To ease our difficulties.
And I’ve said this before, but to me the number one thing we can to do ease our suffering is to start where we are. In other words, accept our life as it is, rather than spending our days bemoaning what might have been and what we thought was going to happen.
There’s that great line from a John Lennon song: “Life is what happens when you’re busy making other plans.” So I had other plans, I was going to be a law professor for another 20 years, but it didn’t happen that way.
What makes us unhappy, according to the Buddhist teachings, is when we are continually dissatisfied with our life as it is. The thing is, we’re never going to get everything lined up exactly how we want it. Even if I woke up tomorrow with my health restored, I’d have other difficulties to face.
So the key to happiness is not trying to get everything fixed so it’s just the way we want it. It’s acceptance—acceptance of both the joys and the sorrows in our life, of both the pleasant and the unpleasant experiences.
To me, the essential teaching of the Buddha really is about acceptance. We have to look at the hard facts and realize that acceptance is going to include some of the things we don’t like. Whether it’s personal or more global—like who’s President of the United States.
We can spend all of our days in what I call “like/don’t like” mode, but it’s just not fruitful because we’re never going to get the world or our life to be exactly how we like it. So change what you can change, but accept what you can’t.
Jenni: In my life experience, I’ve said the serenity prayer many, many times. And at different times I’ve said god or goddess or universe, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
Toni: That’s what I was referencing there. It’s so helpful. I’m really glad you quoted it.
Jenni: Such a good universal thought. And I do believe people of any faith can say that, and they can call it a prayer or a meditation or a quote or whatever they wanna call it, but the basic idea is so solid and foundational.
So if you were going to talk to someone who was newly diagnosed—imagine the Jenni who’s 25 and has been freshly diagnosed with fibromyalgia and her doctor’s said, “You’re going to have much more limited physical activity, yada yada yada,” all the things that go with fibromyalgia. If you were going to talk about acceptance, how would you begin to describe that idea to someone?
Toni: I’ve probably already given a clue to this, but acceptance to me is not some blissed-out state where I’m always smiling and upbeat. But neither is it the other side of the spectrum, which is what we talked about—negative resignation. It’s a kind of middle path, this acceptance of the fact that everybody’s life, including our own, has its share of joys and sorrows.
To me, acceptance is this path of learning to open my heart and open my mind, and it’s interesting: in the Buddha’s language, there’s only one word for heart and mind, “citta.” So I say heart and mind. Opening our hearts and minds to both the joys and sorrows in our life, and being able to say, “This is my life, and it’s okay even though I have difficulties.”
I think that’s what I would say to someone who’s newly diagnosed, that the path—what you’re looking for—is not some blissed-out state, but a calm acceptance of the joys and sorrows in your life.
Jenni: I think I would probably veer toward that same thing myself. And I have reminded many people of this: I reached a state of acceptance and it gave me a lot of freedom from sadness and anger and fear, and has helped me move forward and achieve a lot of the things that I have.
I get a lot of questions; a lot of people email or tweet at me and ask me: “How are you able to do all this?” Most of the people I know with fibromyalgia are on disability and aren’t able to work. And I understand that—I know there’s always a possibility that I could be there myself—but today, where I am is that I have this feeling of acceptance and it has helped me. I know that it will help people to different degrees.
Toni: Well, it helps you accept your limitations. And to say, “I’ll do what I can.” It’s like I was saying before—when we’re fighting, and not in an accepting mode but just fighting what’s happened to us—at least with me, it takes over my whole consciousness. And that’s what I become, I’m just “sick person,” “miserable person,” “person in physical pain.”
One of the wonderful things about acceptance to me is that it opens possibilities. Even though for me, the possibilities are not going to include that wedding this weekend, there are other things I can do.
Jenni: And to appreciate all those things that you CAN do, I think is really important.
Jenni: Well Toni, it’s such a pleasure to talk to you, you’re one of those folks who I’ve known online and through email for a long time and it’s great to share this time with you and hear your perspective on this, because I have so much respect for the work you’ve done, and for where your spirit is.
To kind of take us out, I’m wondering if you have any final tips or a piece of advice that you would offer someone who is maybe struggling with the idea of acceptance?
Toni: I think what I would say to someone is that it’s important to remember that suffering from chronic pain or illness is not a personal failing on your part. We live in a culture where we’re subject all the time to advertising claims and to people around us who think that all we have to do is take this pill and we'll be fine—or that only people who are older develop health problems. It simply isn’t true.
As I said before, we’re in bodies and bodies can get sick and injured at any time during our life, and it’s not our fault. And when I finally got that it wasn’t my fault, that my body was working as hard as it could to try and be better, it opened a new world to me, and allowed me to live gracefully with the hand I’ve been dealt.
Jenni: Such an awesome idea, such an awesome concept. It seems that it’s easy for us to say, it’s not the easiest thing to do, but like you said earlier, baby steps, practicing it every day.
Toni: And always let compassion for yourself be that fallback position. So if you feel like “I just can’t accept that I can’t go to this wedding!” Always go to compassion: “It’s so hard to not be able to go to the wedding.” It softens everything. It just softens your mind. And opens the door to acceptance.
Jenni: So beautiful. It’s like, we’re just taking really good care of ourselves in every moment, which I think is really, really vital.
Toni, I can’t express how grateful I am for the time we’ve had together. I really appreciate everything you’ve had to say.
Toni: It’s really been wonderful, Jenni. It’s great to talk to you in person.
Jenni: I hope we’ll get to hear each others’ voices again soon, and for everyone who’s been reading or listening, this has been your first audio lesson on the idea of acceptance. I hope you'll head on over and listen to some of the other lessons. (Links are available for download at www.ChronicBabe101.com.)
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