In Ep 11 Toni Bernard talks how to be sick and how to live well with chronic illness. We talk fear and suffering, and how her new book will address the many challenges the chronically ill face every day...
FULL TEXT TRANSCRIPT:
Dr. Craig: Thanks for listening to another episode of Spoonie Radio. I am your host Dr. Courtney Craig. Today my guest is Toni Bernhard.
Toni has practiced Buddhism for over 20 years and before a diagnosis of ME/CFS, she was law professor at the University of California Davis for 22 years. She is also the author of How to Be Sick: a Buddhist Inspired Guide for the Chronically Ill and Their Caregivers. It has garnered a worldwide following and has won two novelist book awards: a gold medal in self-help and psychology and the silver medal in memoir. It was named one of the best books in 2010 by Spirituality and Practice.
She is also the author of How to Wake Up: A Buddhist Inspired Guide to Navigating Joy and Sorrow. Toni blogs about these themes for the website Psychology Today, and she has a new book coming out titled, “How to Live Well with Chronic Pain and Illness: A Mindful Guide;" which we will talk more about in today's interview.
So welcome to the show Toni!
Toni: Thank you for having me!
Dr. Craig: Thank you for being here. So your books have been translated in multiple languages, they are available to such a wide audience--not just people in this community with ME/CFS, but people with all sorts of chronic illnesses including their caregivers and anyone who is seeking wisdom. So did you ever imagine such a wide readership and such success with these books?
Toni: No, never imagined it at all. As a matter of fact How to Be Sick, began as a self-help guide literally, a guide for me. I started taking notes on how I might adjust and try to live a good life despite my severe limitations. I met some other people online with ME/CFS, and I sent some of my writing to share with them. A couple of them in particular said, “This is a book, you have to turn this into a book!" It had not occurred to me to do that until they said so. And then I talked to Sylvia Boorstein who was one of my first Buddhist teachers and she read some of it and said the same thing and that's how How to Be Sick was born actually. I had no idea it would have the impact it's had all over the world! It just amazes me still.
Dr. Craig: Yeah, it really is remarkable. And what's interesting about this is you write for such a wide audience with chronic illness. So how do you write in a style that's applicable to this myriad of people's unique health challenges?
Toni: Well, I write from my own experience and I write from my heart, and what I have discovered is that no matter what a person's diagnosis is, and no matter what their prognosis is--I hear from people who are terminally ill. We share more than we don't share in terms of how illness, chronic illness and pain, have impacted our day-to-day lives. So I didn't actually start out thinking that this was a book for everyone. I wrote from the perspective of someone with ME/CFS, but I discovered that what I had to say applied to everyone. And I hear from people all over the world with maybe I probably think I’ve become a lay expert on all the different difficulties people can encounter because it turns out that what I wrote was universal for anybody with health struggles.
So I didn't think intentionally that's what I'm going to do, but it turns out we have so much in common that it spoke to everybody.
Dr. Craig: Yeah, we really do have a lot in common. And one thing that immediately drew me to this book was the title. I mean How to Be Sick--like a guidebook. And your book does include some simple exercises that people can do, but this is so much more than a guidebook, isn't it?
Toni: Well you know, the title is interesting because every once in a while like 1 out of 100 people will say, “I don't want to buy a book with a title like that." But the reason it carries that title is that that is what came into my mind when I began writing this guide for myself. I needed to learn how to be sick.
What I found was that my many years of immersion in the Buddha’s teachings--which I follow not as a religion but as a day to day practice; his insights into the realities of the human condition and his approach to accepting your life as it is as opposed to how you wish it would be--that perspective is what has enabled me to accept the life I have and to try to help others do the same. It's true that the book has a lot of exercises in it but it also comes from a perspective of; this is your life even though you may have problems and difficulties, that's okay. Everybody does. Healthy or sick. That's part of being human. What the goal is to take what you've got and make the best of it for yourself and for those around you.
Dr. Craig: Right, exactly. So much more than just a simple guidebook. There is a lot of wisdom in here. Now one thing you just mentioned that I want to get more into is you mentioned you follow these Buddhist principles not as a religion but as a daily practice. And that's one thing that maybe makes people not pick up the book. Perhaps they are unfamiliar with Buddhism and Buddhist principles. But there is wisdom in your writing that can be appreciated from a secular viewpoint, right?
Toni: Yeah. I try… I have a lot of people who read the book who are active in other religions that have said to me, “It's amazing that when I saw the subtitle, “Buddhist inspired guide" I thought maybe this wouldn't be right for me. It's really non-parochial in the sense that the focus is on wisdom from the Buddha, the same that much of that wisdom comes in other spiritual traditions, certainly from Jesus. Buddhism just happens to be mine and I just resonate so well with the Buddhist perspective on life.
One of the treats for me has been the fact that so many people write to me and say, “I am a devout Christian" or, “I am a devout Jew, but this book speaks to me anyway." In my new book I've decided when I wrote it to leave out a lots of the Buddhist terms and just to the extent that I discuss any of the same kinds of things just to use the English language rather than some Buddhist terms that people will say, “Well what's that word again?" So I can translate it into a language that all of us can understand.
Dr. Craig: That's great, that's great and yes, I come from a different kind of religious background and upbringing but I agree exactly with that. These Buddhist principles are so similar and parallel a lot of other religious principles. It's nothing to be intimidated about even with the ancient language as well.
So your second book title is, “Waking Up" which is also a clever title. Now this is not related to alarm clocks or energy or activity in any way, this refers to a Buddhist principle as well, right? So could you explain what this title "Waking Up" means?
Toni: Well first of all I have to say that my publisher really wanted me to stick with the "How To" otherwise I am not sure the book would have been called, “How to Wake Up." But having come up with something that started that way I am happy with it. But at first I thought, “well one "How To" is enough.
"How to Wake Up" is not a book about chronic illness per se, except to the extent that I write from my personal experience and I illustrate practices and ideas that I am putting forth with my own experience, and my experience over the last 14 years has been chronic pain and illness. That's where a lot of people who like How to Be Sick also like, How to Wake Up. But the book itself, it's a book that puts forth my understanding of the Buddha's path--the Buddha's path to peace, the Buddha's path to well-being. So it really is a Buddhist book, and is to my surprise being recommended by a lot of Buddhist teachers as an introduction to Buddhism. That just pleases me immensely.
For one thing, when people say, “I am interested in Buddhism, what book should I buy?" That's a tough question to answer because there isn't one Buddhism, just like there isn't one Protestantism. There are lots of different schools, be it is Zen or Tibetan. So there are many different schools of Buddhism and they all differ slightly. I draw on all of them, and I think that's one reason why this book is resonating with a lot of Buddhist teachers as a good introduction; because I don't come from one perspective. I just think in terms of what I understand the Buddha to have been teaching.
So it goes over a lot. The Buddha’s main teachings and then there are practices and exercises, many of which I made up and some which come from the written record of this teachings. Then again illustrated with examples from my life or from stories that other people have told me.
Dr. Craig: Now you have been practicing Buddhism since before your diagnosis. So with a diagnosis your practice had to change a little bit right? This is probably maybe something that other listeners who are also severely ill can relate to. The typical meditation practice might not be feasible. So how did your kind of practice involve as with the ups and downs of dealing with illness?
Toni: Well that's a really good question because my meditation practice is actually changed since I wrote, “How to Be Sick." It's been five years and that's not surprising. Everything is always changing in our lives. At the time that I got sick I had a very disciplined meditation practice, really too disciplined. I wasn't flexible at all. Twice a day, 45 minutes…I had to meditate and I meditated. I actually sat in a chair because I had back trouble so I didn't sit on the floor in the lotus position or anything, but I did sit in a chair and I meditated twice a day. I joke about in, “How to Be Sick" how that on my daughter's wedding day which was a wedding that I had to put on because he didn't even live in our town, she lived across the country, I meditated twice a day. Then I got sick and I found it impossible for me--it wasn't impossible--but I felt it was impossible to meditate.
For one thing I couldn't sit up that long and I didn't feel as if lying down to meditate was the real thing. That's why I am saying that my inflexibility I think hampered me at that point because I couldn't do what I had always done, I quit altogether. I stopped meditating. Meditation is only one part of Buddhist practice. The Buddha put forth this eightfold path and meditation is only one of the things on it. It also has to involve how you treat yourself, and how you treat other people and there is a lot more to it than just meditating.
So for many years I didn't meditate at all but I have started again and I meditate lying down. I am fortunate that I am not one of those people who falls asleep lying down although I talk about this in my new book; if you do fall asleep while you are meditating lying down that's fine, how good for your body to have a little nap! I have started meditating lying down and it's been really quite wonderful for me to take up the practice again because it calms my mind, it allows me to seclude myself from all of the constant sensory inputs and a lot of that sensory input comes from our discursive thinking and so I found it to be very helpful.
Dr. Craig: And I know a lot of patients utilize it as well, and there are different adjustments you can make certainly. Lying down is a great option for those that are more severely disabled.
Now another thing that our listeners and people dealing with illness, this illness in particular ME/CFS as well as fibromyalgia, can really relate to a lot of the principles in your book. And one thing that I hear a lot in this community--and I think you just wrote a piece about this recently on your blog--that's constantly thinking about the past, constantly thinking about things we can't do anymore, things that we wish we could do again. You argue in your book and also I think on your blog that this is not the right mindset for us to take. So could you speak more about this – what we can't do anymore.
Toni: Yes, I actually have a chapter in my new book called, “Beware of good old days syndrome," because you have this tendency to put the past on a pedestal. I can easily fall into that trap where we think about what we could do before we became sick. By the way I also don't talk about it in the book but I have fibromyalgia too, it's just minor compared to the difficulty I have from the ME/CFS.
We tend to think about what we did before we became limited, and forget any of the difficulties or negatives about it. For me I was a professor at the University of California Davis here where I still live, and I thought: Oh, I had a perfect job and everything about it was perfect; the students were fabulous and my colleagues were wonderful. Well it wasn't actually like that.
As with everything in life it was a mixed bag. It's as if the negative just drops on out, which is understandable because we are so frustrated at our inability to do what we once could do. Even if we do think back on some of the things--like my husband and I love to go to Hawaii together, that was our summer vacation, even if I say, “Well yes that really was perfect" I have been sick now for 14 years. It doesn't mean it would be perfect to me now, everything changes. So even the parts of our past that were really exactly how we want them to be, there is no reason to assume that they’d be that way now.
Life is hard enough with chronic pain and illness. My theme, the theme of my writing is – let's not make it worse. One of the ways we make it worse is to expend what little energy we have thinking about how great our life was before the way it is now. When I had that realization and was able to say, “Oh, there you are again exaggerating how wonderful everything was before you got sick" it was incredibly helpful partly because it allowed me to focus on the life I have now, and try to find things to do that are satisfying. I love to crochet. I like to play with my dog. Rather than spending what little energy I have longing for what I just can't have or do anymore.
Dr. Craig: Right, yeah. Living in the past is a tremendous source of suffering for a lot of patients. At the other end of the spectrum--and I feel like I am more at the other end of the spectrum--and that's dwelling on an uncertain future. Kind of on a personal note here, this is one fear, and one thing I struggle with a lot. I’d love your perspective on it. I have been sick for… I was first diagnosed at age 15, I have been in remission—or as I like to say I have a good handle on it-- for the past five, but I still have a tremendous fear of relapse. Particularly a fear of severe relapse, and this is a great source of suffering for me. So what advice do you give on that other end of the spectrum, this fear of uncertainty and unpredictability of health and our future?
Toni: Well, Courtney I have those same fears that arise. I think actually like you, it's a bigger problem for me worrying about the future than bemoaning the past. I have concerns that my particular focus is something will happen to my husband who is my caregiver, and not only will I not have a caregiver but he will need me to be his caregiver to help him out and take care of him and I won't be able to do it. That is a fear that arises for me all the time.
The way I deal with it is with a certain type of self-talk, which is to recognize that none of us can predict the future. We can spend all our time worrying about events or happenings that may not even happen, and are probably unlikely to happen. What we wound up doing is squandering the present moment, because we are so focused on what could happen, what might happen, the uncertainty. As for me I have not been able to keep that fear and uncertainty from arising, but what I have done is to learn to skillfully handle it by recognizing… I talk silently to myself by saying, “Oh, there is that fear again. Yeah hello, I know you well, you're going to hang out here for a while, and then you will go away and I know you have nothing to do with what might actually happen or not happen in the future."
The reason I find that important is that if you try to deny that you are feeling the way you are feeling, it tends to just make those feelings and those fears more intense. Or if you are not just denying, but if you are angry or hating those fears it just makes them more intense. I don't want to feel this way, go away, I hate this uncertainty. That never works for me.
What works for me is to say, “Oh, hello there you are" these thoughts are rising in my mind like all thoughts. I like to think of thoughts as just blips of energy arising and passing. Where is the thought you had five minutes ago? I don't even remember you know. So I almost greet them with a certain kind of friendliness and say, “Okay, you are here but I know you have nothing to do with what might actually happen in my life but you're going to hang out in my mind for a while. Okay" and then I just get on with things. I hope that's helpful.
Dr. Craig: That is. And as you mentioned this is a continual process, continual practice that we have to continue to hone; whether it is fear of the uncertainty and the future or any sort of fear and suffering that we bring into our minds--our thoughts. As you were talking there it reminded me of an excellent quote that is in your book and that's of Byron Katie wrote, "You can argue with reality. You will lose but only 100% of the time" or something to that effect.
Toni: That's it, that's what she said!
Dr. Craig: Yeah. Her work has also been really influential for me as I am working through some of these things as well. I was first introduced to her through your books, I appreciate you including her work in there as well.
Toni: She shows up in all three of them, because I find her work really helpful too. She is not Buddhist, she is just a person out there who has been tremendously helpful to others. She has workshops and there is a lot of videos of her online that people can watch. I mean basically in a nutshell what she is saying is thoughts arise, you don't have to believe them. They are just thoughts. Believing our thoughts and then spinning them out into stressful tales is a tremendous source of suffering in our lives.
That's why I came up with this practice of just saying, “Oh, hello" because it's a way of taking the power out of the thought, it's just a thought. You don't have to believe it.
Dr. Craig: Exactly. I heard you mention another really powerful statement in another interview you said something to the effect of, “Comparing sorrow and suffering." So you mentioned that sorrow is optional and suffering can end. So I wonder if you could talk more about that. I think that's a really powerful statement that kind of ties into this.
Toni: What you're saying reflects what I meant, but one of the themes of "How to Wake Up" is actually that sorrow is inevitable, but suffering can end. Of course it has to do with how you are going to define those words. Sorrow to me is something that all of us will encounter as humans, and the Buddha had a list of sorrows. Of course they include getting old and getting sick and losing those you love, being separated from those you love or losing those who you love. Who can go through life without encountering sorrow? We can't.
But by suffering in my understanding he meant something different. Suffering is that intense really unhealthy desire for things to be other than they are. So of course one a source of suffering would be the desire to never encounter sorrow in this world. I don't think that's possible. I don't care how enlightened you are. If you have a child and the child dies you're going to feel sorrow. So whatever is going on in your life, the source of suffering--which it is the suffering that I say is optional--the source of suffering is that unremitting intense desire for things to be other than they are. For me it's been over the years, the desire to be healthy again and that still comes up for me.
My husband on Friday is about to go down to Los Angeles to our daughter's house to spend the weekend with our daughter's family, mainly our granddaughter. He tries to see her once a month, and I am lucky if I see her twice a year because it's hard for them to come up here. So knowing that he is going down there I feel sad about that. It makes me sad, it's a source of sorrow.
I work on not turning it into compounding it by saying, “I don't want things to be this way. I hate that I can't go down there." That's the desire coming up that simply can't be fulfilled. I can't will myself to be healthy enough to travel. I know that people with ME/CFS have a great range of limitations imposed on people. Some people are able to travel. I am not. I have a pretty severe case.
I acknowledge the sorrow but I say; I accept that this is the way my life is that if I spend all my time desiring---this is actually the second noble truth of the Buddhas, that the cause of suffering is desire. But he meant a particular type of desire, and it's that kind of desire that we feel has to be fulfilled or we will never be happy again.
What that does is keep us from living, from doing what we can this very day to try to have a good and enjoyable life. That's the problem with living in the past and living in the future is that we don't enjoy what we can about the day that we do have even within our limitations. I won't be leaving the house today and that used to be unacceptable to me and it isn't anymore. I’ve stopped fighting it. When I stopped fighting it that's when I started to feel that peace and contentment that the Buddha talks about and that as I said it is present in many spiritual traditions--being able to accept the life that you have and make the best of it.
Dr. Craig: Right, right. That sounds like the theme of your new book which is titled, “Living Well with Chronic Pain and Illness." So how is this book a little bit different than your previous two?
Toni: Well it's different in that much broader in scope and instead of being organized around principles, Buddhist principles and practices, it’s organized around the challenges that all of us face. So there is a chapter on the challenges faced by young people, there’s a section on dealing with loneliness, and there’s a section on handling sleep problems. It's organized differently in that it takes up separately each of the challenges that people face. It's longer than the other books because they are a lot of challenges, but the chapters are short but there are 42 of them.
So that's the way in which is different is that focused more on specific challenges that people face.
Dr. Craig: Okay, great and when can we expect to see that on bookshelves?
Toni: Well, October, the middle of October.
Although it's already up on all the websites for pre-order, I can't believe how they get it up there so fast but unfortunately it won't actually be in people's hands for a few months.
Dr. Craig: Yeah, I look forward to reading that one as well. Okay Toni, we are out of time so one last question and that's; how can listeners find out more about your writings and any sort of upcoming work?
Toni: Well, I do have a website but it doesn't have the new book on it. My daughter is my webmaster and right now she is working on editing the website to add the new book in. But you can find information about the other books there and a bit of a bio of me.
But I also would recommend finding my blog at Psychology Today and scrolling through. If you go to "psychologytoday.com" I think it's underneath "meet the experts" and find my name, you will find my blog which is, “Turning straw into gold." Maybe if you put that in Google it will show up too. Then people can sort of scroll down and click on any of the pieces--they are all pretty short, well they are all short--that appear to be of interest.
I tend to post twice a month and usually this is not a blog in the sense of a daily blog". I got up today and I drank a glass of orange juice and…" These are little essays. I try to post twice a month. One is always on health, and the others are on other life's challenges.
Dr. Craig: Wonderful, wonderful and our show notes will have links to all of those sources. Okay Toni well thank you so much for being here. I really look forward to reading your new book. I’ve really enjoyed the previous two. And just thank you so much on behalf of the whole community for being a source of wisdom and hope and positive energy for this ME/CFS community.
Toni: Oh, you're welcome Courtney. Thank you for having me on.
Dr. Craig: Thank you. Okay, so be sure to subscribe to Spoonie Radio over on iTunes so that you never miss an episode. Until next time…this is Spoonie Radio signing off.