I know a lot of people like her work. I find it glosses over the suffering and tries to put a smile on everything. Sort of like a cheerful puritan, "Now, now, let's make the best of this!" "Put a smile on your face!" "You're sick, so deal with it--the best you can!" I can feel this cheerleader emphasis behind the buddhist stuff. And I really did like her essay on dukkha and dukkha dukkha...which was posted somewhere, maybe on Facebook.
Generally, though, I don't find that honest (for *me*, not necessarily for others, since the book is popular). I think the title is very good from a marketing standpoint and terrible (to me, again, this is my opinion only) from a health standpoint, as it starts with the given that you're going to stay sick and have to learn how to do it well. "How to Be Sick". What does *that* say spiritually? I'd rather read, How to Get Well...if it was practical.
JB--
What I liked least is when she espouses the "blessings of the illness." On page 28--regarding the truth of annica, "the bittersweet cold that penetrates to the very bones" she writes: "Without the bitter cold of giving up my profession, I wouldn't have the fragrance of Mozart and Beethoven wafting through my bedroom. (Of course I could have enjoyed the fragrance before I got sick, but the fact is I didn't.) Without the bitter cold of having to stay in bed most of the day, I wouldn't be so attuned to the changing seasons; I never realized they are right on view outside my bedroom window." and down the page: "There are so many ways I've "grown" ONLY BECAUSE OF THIS ILLNESS..."
I find it really annoying when people try to convince me my three decades with a debilitating neuro-immue disease is a f-----ing blessing. It's almost as bad as being told I "created my own reality."
I have found that the hardest and most necessary part of dealing with my symptoms is being able to honestly face them as they are, without pretending they are something better or easier than they are. If I resist my symptoms by minimizing them, or trying to transcend them, I ALWAYS make them worse... because that which I resist will definitely persist! So having a HOW TO program is very much contra-indicated in my case. I do best when I allow myself to feel what I feel, embrace it fully, and find ways to be with it and express it. There are no rules, and no one thing works all the time. The more willing I am to be honest with myself about my suffering, the more free I am from it. Yes, it is VERY STRANGE how that works.
Exactly, Neilk.
And if she's going to talk about the upsides of chronic illness, or things you can do from your bed, etc, she should realize she is still talking as a privileged person. She has a bed. She has a home. There are levels of suffering way beyond that--like all the Fukushima, radiation exposed, sick and homeless people.
She does not acknowledge the wider grisly aspects of suffering. She should read Humanity by Jonathan Glover, which is a history of wars. There is a great deal of evil, horrific suffering, torture in our human history. What about the suffering of the deer mauled by the lion? There is a certain narcissism and false marketing in talking to the privileged group of people who are in bed feeling like crap but not so sick they can't read, write, and not so poor they can't get whatever food, shelter, and treatments they want...and well enough to contemplate their spiritual advancement and knit in bed or whatever cheery things they want to do to encourage themselves that life is still worthwhile.
Indeed, life is still worthwhile, but not necessarily for the reasons she says.
Well, the book is popular, it's part of our culture--self-help, self-actualization, turning adversity into an advantage etc.
Didn't get that at all but then again this stuff work for me and if it doesn't I imagine you would think it was just words. Buddhism is so not ' cheerleadery to me. It's very much about not shying away from the negative in the world and not trying to hold onto the positive; kind of the opposite of cheerleading really.
I see the title as a kind of koan.....How to Be Sick...when you're sick you're sick so it would be best in those circumstances to learn how to be that way. Since its a difficult way to be there's some real learning involved.
I agree that if Toni could have written "How to Be Well" she would have. Unfortunately she's still ill.
I agree that if Toni could have written "How to Be Well" she would have. Unfortunately she's still ill.
But Dreambirdie - you just described a "How To" program......feel what you feel, embrace it full and find ways to be with it - that's all very Buddhist and it fits well in my opinion with what Toni says in her book.
I think she's experienced quite a bit of illness in her life.....
Yes Cort, I have done a lot of inner process work, have read extensively on this topic, and have actively participated in several spiritual traditions along the way, including a couple of Buddhist communities. I was interested in inner process as far back as high school, even before I became ill. In my 30+ years of investigating my inner reality, I have become well acquainted with the workings of my own "crazy mind" and the places where it sabotages me and sends me down the slippery slope into self-loathing, depression and despair. Along the way I've found a few key "things" (questions, reflections, reminders) that tend to work for me. I would not personally describe my commitment to inner process as a "HOW TO" program, and I think that anyone who has taken inner reality seriously would be quite reluctant to do that.
When I describe feeling what I feel, embracing it, and finding ways to be with it, that's not exactly a technique, at least not anymore than describing sex with my partner as a HOW TO technique of: taking our clothes off, lying down in bed, and attaching our genitals together. There's many other important details along the way, that are very personal, that require sensitivity, careful attention, open-hearted involvement, and in-the-moment response. Most of this can't be described in words, and if it could be described for what it is in one moment, that moment would quickly change to another that needed an entirely other description.
The psyche is fluid, and the mind is slippery. Neither will fit into a box, at least not any longer than a few seconds. That's why I was sure to say "there are no rules and no one thing that works all the time." I wish that Toni Bernard recognized that. If she did, then maybe the book would have more appeal to me, but then it would have to be an entirely different book without a HOW TO title.
Cort, you've done better than most because you were willing to sleep outside, and avoid toxic load on your system, even when it was a tremendous hardship.
That might not work for everybody, or even most, but I'm of the opinion there are many options people don't try. Like hyperbaric oxygen--a home chamber, etc. Lots of things, I'd have to know they tried them all before they tell me how to be sick.
Referencing my other post--no, I'm not at all saying she has to be a Fukushima victim to write the book. I'm saying that there is something disingenuous to me about a wealthy westerner lamenting the loss of her privileged job or that she's sick in bed, and talking about how to suffer wisely and find the silver lining----and not at least first really understanding the first line of Buddhism: "Life is suffering." To acknowledge that suffering is distributed on a bellcurve through time and space, and that many have suffered so much worse than she has. If she really can embrace that, and acknowledge that, and that her suffering is relatively minimal compared to an AIDS victim in certain cultures completely abandoned by their families alone in a hut suffering agonies as they die...that there is much more horrific suffering...as well as of course many happier and luckier lives that just play themselves out without too much suffering until death intervenes...maybe I'd listen more closely.
Laura Hillenbrand was quoted once as saying, and I'm totally paraphrasing, that she never assumed she deserved to avoid suffering. There is something about Toni's laments that makes me feel she thinks it was a very unlucky blow, and that now she is applying these spiritual principles from her bed---now she is listening to Mozart--no, it doesn't wash with me. There are many other interventions she could try to get well...many. This is my opinion, I've felt it for ages, now I'm saying it, I don't see that it should be unpopular.
I agree any techniques that calm the mind and help one handle adversity are wonderful. That's not what I'm talking about. I find your story far more inspiring, and relevant, frankly. You've taught me more about how to be as well as possible when sick.
Thanks Dreambirdie - I now see what you mean about the "How To" (I wasn't referencing the title before.). I agree that the mind is slippery and really, really hard to catch a hold of - even glimpse.
Here's one thing I do to alter 'my reality'. This is from Landmark Education...I create a possibility - like being calm and experiencing love or enjoying nature - and then I step into it. This does shift my reality for a bit; I can create periods of calmness, love, etc. I think this is kind of similar to what Gupta does; he has you go back to a time when you felt well - experience that feeling and then step into it. Either way you are kind of moving yourself into different mode of being. What do you think about this?
But how can you NOT want things to be different, when faced with pain and evil?.
I'm glad that you're looking at and discussing these questions, Cort. It's something I've thought about a lot since getting sick. I was fortunate in that when my insurance company referred me for the requisite CBT, I got a psychologist who had herself lived with chronic pain; she believed me to be mentally healthy and physically ill, and aimed the CBT at helping me to find some kind of peace with my changed circumstances and life. She was the one who first set me on the path of learning about a Buddhist-like approach, which I found very helpful. Then when Toni's book came out, which used that approach to specifically deal with chronic illness, the wisdom in her book really resonated with me. It hasn't made me less ill, but it has helped me to find ways to experience happiness, joy, and peace, even while sick.
It's funny that I should read this blog today, because I just pulled out "How to Be Sick" to re-read.
One concept (or maybe it's just the word) that seems to trigger a negative response in some people, is the idea of acceptance. I like the way Toni gets across the idea that acceptance doesn't mean giving in or giving up or acquiescing. Rather, it means looking squarely at what is, and dealing with that reality. Acceptance is something you do with your head up, not bowed down. Acceptance is what allows you get on with living.
I hear a lot of people say "ME/CFS has stolen my life." I understand that feeling, but I'm not willing to let that happen. This IS my life. My life is one that includes ME/CFS. Right now, it's a life that is largely housebound, largely prone. Okay, so what I want to do is maximize the amount of living I can squeeze out of it. If I can't go for a BIG life, can I go for a deep one? Yes. By being as aware as possible of life while it's happening. Like hearing the sound of a wild snail eating. It's kind of like you can study the cosmos by looking at an atom. By finding all that's wonderful in my life as it is now, not waiting until some possible time in the future when I'm well. By finding ways to LIVE life, even if I can't DO much.
Thanks Jenbooks. We'll see how "How to be Sick" progresses.
I think buried deep, particularly for those who have been ill for long we must carry a burden of illness (as does anyone with a chronic illness) - a feeling of shame or wrongness - and the idea that illness is part of the human experience ,that a certain portion of people are going to experience that does make it easier to handle.
My problem with Toni's work is it ignores the "rag and bone shop of the heart" (Yeats). The grinding suffering. The sleepless nights. The exhaustion. And worst of all, that this often is an illness that is neurological in origin--for instance the new idea of an autoimmune neurological illness--meaning that actual brain function, including mood, is affected. So it's almost like saying, Stop having seizures--to an epileptic. Some of the thought patterns may be equivalent to seizures...they are not simply thoughts.
I never feel she gives me the low-down before talking of ways to deal with things. And also, she has a pretty good situation. She was successful, and her husband still works, so they are financially comfortable. So that doesn't address people who are sick on SSDI...and can't even try chinese herbs or acupuncture like she does.
I just have mostly avoided her work because of this. I feel to some extent it has a lot of translated buddhist wisdom, and to some extent its pablum.
Referencing my other post--no, I'm not at all saying she has to be a Fukushima victim to write the book. I'm saying that there is something disingenuous to me about a wealthy westerner lamenting the loss of her privileged job or that she's sick in bed, and talking about how to suffer wisely and find the silver lining----and not at least first really understanding the first line of Buddhism: "Life is suffering." To acknowledge that suffering is distributed on a bellcurve through time and space, and that many have suffered so much worse than she has. If she really can embrace that, and acknowledge that, and that her suffering is relatively minimal compared to an AIDS victim in certain cultures completely abandoned by their families alone in a hut suffering agonies as they die...that there is much more horrific suffering...as well as of course many happier and luckier lives that just play themselves out without too much suffering until death intervenes...maybe I'd listen more closely