After I read How To Wake Up last summer, Toni Bernhard was kind enough to answer some of my questions about the book and the Buddhist practices she suggests. You can read the full text of our conversation here. This post has been in the works for many months, and I have felt very guilty about the delay. But as it happens, the beginning of a new year is the perfect time for me to reflect and refocus. I’m happy to share Toni’s wisdom with you today.
Most of the plans I had for my life were wiped away like marks on a dry erase board when I got sick in 1994. Career? Children? Even grocery shopping? Gone, all gone. But I don’t want to be a person who always complains about what I can’t do or how sick I feel. One of my greatest struggles is to find a way to be content, even in the face of this suffering. I have only succeeded in doing so because of my spiritual journey.
One of the things I love (and sometimes hate) about spirituality and personal growth is that there is always more to learn. I am a Baha’i, but I draw inspiration and strength from many religions and spiritual traditions. Toni Bernhard’s books, How to Be Sick and How to Wake Up, have taught me about a Buddhist perspective on coping with suffering. I consider Toni to be one of my Teachers, and her lessons on detachment and impermanence have really helped me.
Many days, I long for escape from my body, this illness, my disability, my confinement in my home, my isolation. In the early years of being sick, I watched a lot of television – A LOT. I was too sick to read or write much. It was all I could do to pay the bills once a week and cook a little bit. Ignorant about ME/CFS and post-exertional malaise (it was the mid to late 1990’s), I was in a permanent push-crash cycle. All I wanted was out. Even now, when my cognitive function is somewhat improved and aggressive pacing/activity management has evened out my functionality, I still want out.
Toni’s second book begins with the necessity of waking up, of engaging life fully as it is. But why would I want to do that? I asked Toni if it was easier to not wake up to the pain in life. Some days, I think ignorance is bliss and distraction is divine. But Toni told me, “It depends on what you mean by ‘not being awake.’ To me, not being awake is a source of pain in my life in the form of mental suffering. By that I mean that one aspect of waking up is waking up to the realities of the human condition, so that we’re not deluded about what to expect in life.”
This, I understand. When I pretend my illness isn’t happening, either by pushing through my symptoms or by distracting myself, it actually doesn’t reduce my suffering. I might feel better in the moment of denial, but it’s impossible to maintain indefinitely. Sooner or later, the truth smacks everyone upside the head. I can’t pretend that I’m not disabled. Toni is right: when reality pushes through the flimsy wall of denial, it hurts more. Not only because my denial has probably led to a crash or other negative consequence, but because I’ve been fooling myself. That causes more pain.
But facing life as it really is in the moment, whether it’s good or bad, is not enough. We not only have to be present with whatever is happening, we need to recognize that we can’t have everything we want. Being dissatisfied with the way things are only creates more suffering. And even if we get what we want, it will be impermanent and change will come again. I could regain my health tomorrow, but I would still face illness and death again in the future.
One of the things I’ve learned from Toni is “weather practice.” In her first book, Toni describes seeing pain (physical, emotional, spiritual) as impermanent like the weather. No matter what I am feeling, it will pass. It will change. Knowing that pain and suffering will give way to beauty and joy makes it easier to bear the pain. And knowing that joy will give way to pain helps me stay detached from the high, so that my heart doesn’t break when it ends. There is a quote from the Baha’i Writings that I love:
Grieve thou not over the troubles and hardships of this nether world, nor be thou glad in times of ease and comfort, for both shall pass away. This present life is even as a swelling wave, or a mirage, or drifting shadows. – Abdu’l-Baha
One aspect of understanding impermanence and detachment has really troubled me. If everything is impermanent, and if wishing things were different causes pain, should we even try to make positive change? Certainly ME/CFS advocates want something different, as in all social justice movements. Many types of change or advancement in our personal lives comes from a desire for something more, something better. Does detachment mean giving up on achieving change? But Toni explained it to me this way:
Good things do come out of wholesome desires, such as the desire to be a civil rights or health advocate. The type of desire that the Buddha was cautioning us against is tanha. It’s an intense self-focused desire that’s experienced as a need. It leads us to think that if only we could get what we want (or get rid of what we don’t want), we’ll find lasting happiness. But the universal law of impermanence dictates that nothing lasts forever . . .
Second, the wholesome desires I mentioned—those based on good intentions, such as care and compassion for others—can also become a source of dissatisfaction and suffering if we become attached to the results of our actions. This mean, do your advocacy work—with all your heart—but know that you may or may not succeed in your efforts. That wholesome desire can turn into the painful desire of tanha when you begin to feel that you need to get the results you want.
I have experienced the difference between wholesome desire for positive change and the painful desire of tanha in the last few months. I am passionate about doing whatever I can to contribute to a positive outcome in the IOM case definition study. I want such an outcome for all ME/CFS patients, not just myself. But I have sometimes fallen into the trap of believing that I will never be happy if the IOM process fails us. I think about what a bad result would do to us, and it feels like an abyss that I cannot see past. These thoughts cause me deep despair, and then the advocacy work becomes a source of true suffering. I have to act with all my heart, as Toni says, but also be personally prepared for (and a bit detached from) failure. That is the only way I have found to prevent this controversy from completely crushing me.
But I don’t control my mind all that well. My thoughts run all over the place, and it is far from orderly or sedate. There is a fantastic quote in How To Wake Up that captures this brilliantly. Toni quotes Bhante Gunaratana as saying, “Somewhere in this process, you will come face to face with the sudden and shocking realization that you are completely crazy. Your mind is a shrieking, gibbering madhouse on wheels barreling pell-mell down the hill, utterly out of control and hopeless. No problem.”
I laughed out loud when I read this the first time, because this is EXACTLY what my brain feels like. And as Toni explains, there is tremendous peace and relief in that realization:
He’s pointing to the fact that we can’t control what thoughts and emotions pop into our minds. Knowing this is tremendously helpful to me because it means that the key to peace and well-being is not controlling what thoughts and emotions arise, but learning to respond skillfully to them. . . .
The last step in that process is to “let it be” which, for me, is the best way to handle this crazy mind. We let it be by acknowledging whatever we’re feeling, without judgment or aversion. Then we patiently wait for the stressful thoughts and emotions to yield to the universal law of impermanence and pass out of our minds, while evoking compassion for ourselves over any suffering they’re giving rise to.
Toni has helped me realize “we control a lot less than we think we do in life. When we can see this and accept it, then we’re better able to ride life’s ups and downs without being tossed around so much.” That sense of calm, peace and well-being is what I yearn for. Toni, in her kind and gentle way, has taught me that this is a possibility in each moment, and then the next, and the next.
I cannot force my life to conform to what I want. In reality, I have never been able to do that. All those plans I had that were wiped away by ME/CFS? There is no certainty that I would have ever achieved them anyway. In fact, the nature of existence is that at least some of them would not have come to pass. What I never grasped before reading Toni’s books is that, to quote the movies, there is no spoon. I cannot bend life to my whims, therefore it is I who must bend. Bend, and never break. Toni says:
Understanding that my dissatisfaction with my life can be traced to not getting what I want has helped me tremendously. I realized that I’m left with a choice—spend my days in frustration and dissatisfaction (dukkha) because I can’t get what I want (my health restored) or accept that I’m sick and that, although I’m doing my best to recover, I might not. In fact, I may be sick the rest of my life. I feel much better mentally when I’m able to give up the constant desire to get well. One reason that I feel much better is that it frees me to look around and see what life has to offer to me, even with this illness.
2013 was a brutal year for me. Our family dealt with multiple illnesses and surgeries, and my closest friends faced a number of difficulties. We joked that no one should want to be near us because we seemed to carry such a cloud of bad luck. But instead of seeing the year as the worst of my life, I’ve tried to reframe it as a year of miracles. We had many close calls, but my family is intact and on the mend. I have so much to be grateful for, even today when I am confined to bed for the third straight day this week.
Toni has taught me to accept the reality of whatever is happening, to detach from unhealthy desire, and to recognize that even the worst year of my life was not permanent. Being able to separate myself from my burning wants and do-not-wants, even for a moment, brings relief. It helps me be compassionate towards my body, working so hard to keep me going. It buffers the pain of disappointment and fear, and reminds me to focus on what matters most. And like every spiritual practice, it takes practice. I must detach, then detach again, then remind myself to detach again. Trying to govern my completely crazy mind is frustrating, but also an opportunity for hope. If I cannot detach in this moment, I can try again in the next.
Very profound insights…so proud of you!
Well explained, Jennie. It has been such a relief for me to realize that I can act with a full impassioned heart towards a desired goal without becoming attached to a particular outcome. I am free to care deeply while also accepting what is. That has been a wonderful revelation to me.
A revelation to me as well. It is freeing and comforting, at the same time.
Wonderfully written and said. I need to read this everyday i think. Thank you xxx
I will remind myself every day as well.
Thank you, my friend. This reminder of impermanence and weather practice is just what I needed today, just a few days after the 23-year anniversary of when this illness began for me. The wants and do-not-wants have been speaking so loudly that they drowned out all memory of equanimity and balance. Your reminder that the fantasies of what-might-have-been-had-I-stayed-healthy are really just illusions is just beginning to allow me to notice the chair that I am sitting upon at this moment.
The joy of seeing family on that very anniversary evening lead to feeling bereft that I could not join them on the family ski trip, that the few lovely hours of being enveloped in warmth and comradery would continue for them and abruptly end for me. In truth, I have no way of knowing how their vacation will play out. They may have a fabulous time, or there may be disappointments and squabbles, or some mix of the two. Somehow, like the weather, these intense feelings of loss will move on and some balance will return. I’m so grateful to Toni Bernhard for her beautiful books, and to you for writing and posting this wonderful piece. Thank you!!
Yes, it is so bittersweet to have wonderful time with family and then have it be cut short by our limitations. I feel this all the time with my niece. I’m trying to learn how to cherish the time without crushing it in my grip.
Thank you, Jennie. Much to be learned by all this wisdom.
Tis a ‘challenge’–all any of us have guarantee of is ‘the moment’ . . . yet . . . we have our realities to face. I am looking forward to reading Toni’s book How to Wake Up also; I ordered it just before Christmas. Here’s to good things for 2014.
Beautiful, Jennie
Thank you Jennie.
So similar in my path with M.E./CFS – (40 years) especially the ‘weather’ surely changes and passes. As you said ‘One of my greatest struggles is to find a way to be content, even in the face of this suffering. I have only succeeded in doing so because of my spiritual journey.’ Me too.
The world, human lives, are inconsistent; my body, shambling mind, simply reflects this in a way that is right in my face! Unavoidable! That is so useful to realise fully; that the now is precious, that life is transitory, that those with health can not, do not see this so clearly as we with the disease clearly can! There is a ‘gift’ aspect of our condition.
This Body is not mine. The pain, the lack of energy is of the body and the mind. The I is separate. Meditation is so beneficial.
As you say, ‘[spiritual practice] … helps me be compassionate towards my body ……….. and reminds me to focus on what matters most. And like every spiritual practice, it takes practice. I must detach, then detach again, then remind myself to detach again.’
Thank you for sharing your words, your experience, and telling me about Toni Bernhard’s book.
Jonathan Eyre
What a beautifully written, inspiring article! I’m so happy for you that you have found a way to lighten your struggles. Detachment has been a personal mission of mine for a while and something I need to remind myself of continually! I’m very inspired to read Toni’s books now!
I’ve just shared this on my Facebook page. As I said there, Jennie says here that she thinks of me as one of her teachers, but I’ve learned so much from her. I feel blessed to know her.
I’m honored, Toni, and blessed by your friendship.
Thank you for sharing your thoughts and feelings. I relate to much of what you wrote, and looking forward to reading Toni’s 2nd book.
Beautifully written. Thank you.
What beautiful wisdom indeed… and I try and practice it everyday, because I have no more choice… accepting, detaching from what can’t be, detaching from the outcome of my endeavors but without abandoning them (great that you add this nuance, how important!) . Letting go without giving up.
But I am also a “tanha-ridden” type! And the mere statement that such desires are unhealthy is not enough spiritual help! The issue can not be done away with so easily!
What of a person who had a PASSION beyond words and was robbed from it by this illness? (I am surely not the only one…) What if – I’ll take a quite extreme example – what if Beethoven had been stricken with CFS and had to give up composing and music… what do you tell him? …
He lost the blood of his life if he can’t live out his passion, and i’m pretty sure he would not have objected to having his rapport to music seen as a ” self-focused desire experienced as a need”. He might even have responded “You are damn right! That’s exactly what it is! It’s all about me and my innermost need to express myself! Through a wonderful form of art!”
I will see my two young kids grow, no matter how sick I am, and can take an utmost pleasure contemplating this thought.
I can think of other peoples’ struggles and of the fortunate few who overcame them, and I can rejoice.
I have missed out on all the recent family holidays get-togethers but could partake in their joy from a distance, without myself being there.
But the one most challenging thing for me about this illness, is how to detach or mourn from … an intense passion. It is what hurts me the most. Like an ongoing hemorrhage.
Any thoughts?
“An ongoing hemorrhage.” A painful and apt analogy. I’ve emailed Toni to see if she has any thoughts for you. I’ll just share my own for now.
For me, the devastated passion is hiking. I became passionate about it just 18 months before getting sick, but I had fallen in deep love with empty trails in the woods. I was going to the gym at 5am to train before work (something I had never done before). I was planning to thru-hike the Appalachian Trail. And when I got sick, it was suddenly more than I could manage to walk six city blocks from my apartment to work. (If only I could have had a 2 day CPET test back then!).
On our honeymoon 17 years ago, we stayed at a hotel in the Adirondacks. My husband was driving us through the woods, and I remember turning my face to the window and crying because I wanted so desperately to be WALKING in those woods.
I think every ME/CFS patient probably has a passion like this, devastated by the illness. It may even be part of what fuels our push-crash cycles. It took a long time for me to realize that walking in the woods was no longer possible. But the results of my attempts were so unbelievably and obviously wrong that I stopped trying pretty quickly. But the passion has never gone away. And it is a continuing wound, as you say.
I don’t really have advice for you. I guess I’ve coped with it by finding adaptations when possible. I can’t hike but we take birding drives through the woods near our home. I am fortunate that my husband insisted on buying a house that backed up to township property, guaranteeing a daily view of trees and birds. I sit on my porch a lot in good weather, and try to find accessible ways to nature as much as possible. My new hope (inspired by another patient) is to get a motorized scooter that can be put into a car. Perhaps some trails will be accessible to me again.
But it is not easy. And the passion never goes away. I’ve always felt that if I truly let go of the passion, I would lose part of who I am. This may be why it continues to pain me, and perhaps that is unnecessary.
What a wonderful article. I too have found Toni’s book (have just ordered the second one) to be the most comforting, Informative and most useful tool in assisting me to stop ‘looking for a magical cure’ for CFS/Fibromyalgia than anything I have tried in the 13 years of being sick. Living in the now and living the best life i can regardless of my illness is pure gold.
I’m so glad to hear this, Suzy. Toni’s books are an enormous comfort to me too.
Thank you for responding with such honesty. I think Jennie’s reply covers most of what I would say. I, too, had a passion that I had to give up—teaching students (it was my career). In both of my books I describe how painful it was for me emotionally to have to stop teaching and how I fought against what had happened for years. But then I realized that this continual tanha-type of desire—the feeling that I needed to get what I wanted in order to ever be happy again—not only wasn’t getting me any closer to returning to the classroom, but was only making me feel worse about my life.
I talk a lot in my books about alleviating the suffering that comes from being driven by tanha. Sometimes the best I can do to alleviate it is to just not make matters worse for myself. It took me several years, but when I was able to acknowledge and accept that I might not ever be able to return to the classroom, it was as if a huge burden was lifted, and it was only then that I could begin to look around for “substitutes” (the way Jennie so beautifully describes how she’s substituted her passion for hiking). But it takes time and isn’t necessarily a linear process—meaning I didn’t just overnight “shed” the desire and have it never return. It was a mourning…that returned periodically.
This is an individual matter but I’ll add that, unlike Jennie, my passion to be in the classroom is gone now and, in fact, were I to recover, I wouldn’t go back. This is because I’ve built a new life around my limitations. This doesn’t mean I don’t want to get well—I do. But if it happened, I’d be more active in regard to my new interests instead of returning to teaching. Sometimes this change in attitude surprises me because that passion to return to my teaching job—that tanha-driven desire—was so intense at the time that I never thought it would subside…but it has. In this way, the universal law of impermanence has been my friend—everything changes, even my mind!
I can only hope for Beethoven that if he’d had to give up composing music, over time, he’d have been able to find another passion. Change is ever present in our lives and, as I said, that realization has been a blessing for me, because I’ve learned that no passion is set in stone. I can only hope that Beethoven would have found a way to live a satisfying life within his limitations.
All my best to you,
Toni
Thank you very much for your generous and helpful response Toni, and for yours as well Jennie.
Jennie,
I was a recreational hiker pre-CFS and like you, I have had to learn to adapt to not being able to do what I enjoyed previously. One thought I have had, and of course it depends on your health, is to get out into nature in alternate ways that require less energy. For instance, canoeing is an option if you sit in the middle and have friends who paddle; another option is horseback riding. Horses can go on some nature trails and if one does it slowly might be doable. (Riding can also be a form of exercise and strenuous; it depends on how it is done. Therapeutic riding programs might be an option as they often work with people with disabilities.) And camping/ stargazing are also options.
I also came across this book recently by Col. Chris Hadfield, an astronaut who recently retired as International Space Station commander. Although Hadfield is not sick/ disabled and achieved his dream job, his book appears to be about the challenges he faced in his life and his philosophy. Might be of interest:
http://www.amazon.com/Astronauts-Guide-Life-Earth-Determination/dp/0316253014
And check out his music video from outer space:
I hadn’t thought about therapeutic riding. Great idea!
Your link to Chris Hadfield’s video didn’t show up, but I think you meant this one which is AWESOME:
And here’s the link to his YouTube channel, which has some brilliant videos as well:
http://www.youtube.com/channel/UCtGG8ucQgEJPeUPhJZ4M4jA
Something for everyone in this post, even those of us who are “well.” Thank you for sharing with us, Jennie.
A help to me in this daily ‘ISOLATION’ that ME/CFS brings are the delightful visits from our daughter’s little French Bulldog. He is so sweet and happy and comes to me for the day once a week–we have little plays and ‘sometimes’ we manage a little neighbourhood walk. He loves to nap and so we are good company and a match for each other while I am crashed in rest-mode on the couch and he is in his little bed right by me. I realllly look forward to his visits–can’t do more than one day like this a week–and couldn’t have my own dog–couldn’t possibly look after a dog on a regular basis–(allergies too–take an antihistamine for his visits).
That little dog truly lights up my life!!! Woof – woof (couldn’t resist 🙂 Actually, being a Frenchie he SNORTS a lot–funny guy!!
Thanks for these helpful thoughts
As another former lawyer with CFS, I’ve always identified with your blog. But never realized you were also a Baha’i as well! It’s funny, my mother and I were just talking last week about the mindfulness books we’ve been reading and how well the Buddhist practices mesh with the Faith. The meditation practices flesh out the half of “prayer and meditation” that I used to ignore, the mindfulness feels like a roadmap to developing virtues like detachment and compassion, etc., etc.
It’s funny, when I read this post last night, I was going to end my comment there. But then I decided to say a prayer for detachment while the subject was on my mind. Picked a prayer at random, and as I was reading, the prayer resonated as deeply, deeply familiar to me. I genuinely don’t know how I forgot this, but that particular prayer was my “go to” prayer at the Shrines when I served in Haifa many years ago. I prayed over and over and over again for God to “fill up for me the cup of detachment from all things.” Mere weeks after I returned from Haifa, I was hit with the autoimmune disease that led to this completely disabling CFS. Here I am, all these years later, “detached” from career advancement, the golden handcuffs of financial comfort, the constant buzz of activity that occupies most healthy people, and focusing intensely on mindfulness practices to keep up my spirits. I prayed for this!!! Don’t know whether to laugh or to cry.
(But seriously, as crushing as this disability can be, I am at least theoretically grateful for the chance to develop deeper spiritual qualities through these difficulties. Have you read The Purpose of Physical Reality, by John Hatcher? Not a light read, but it really clarified for me the “meaning of life” from a Baha’i perspective. Think you’d get a lot out of it, if you haven’t read it yet….)
Tara, what an incredible story! All of it: you being Baha’i, your prayer for detachment, falling ill so soon after returning from Haifa. This sort of thing astounds me. I think, regardless of circumstance, everyone is given tests that give us opportunities to learn those virtues and practice detachment. It’s so tempting (and short-sighted) to see one suffering as greater or lesser than another. I have to remind myself that I am tested to capacity, which extends my capacity, and then I’m tested a bit more. I haven’t read Hatcher’s book but I will now. Thanks for suggesting it!
For those of us who’s vision is impaired it is difficuit to read the pale font over the blue (I do love the blue, though)
Thank you Jennie, for this site. J