I am oh so pleased to bring Toni Bernhard’s virtual book tour to my blog!! Toni has been a friend to myself and this blog for a long time now, and she is just as wise as she is wonderful. I am working my way through the book right now, and even though it pains me to hear how she got sick, it comforts me to know that I am not alone in my fight with this crippling illness. By merging the beautiful teachings of Buddhism and the issues of the chronically ill and their caregivers, Toni has managed to produce a book that is going to be a great comfort to the all of those dealing with sickness (directly or indirectly). HIGHLY RECOMMENDED.
Toni: I fell ill on a trip to Paris in 2001 with what the doctors initially thought was an acute viral infection, but I never recovered. After six months, I was given the diagnosis of ME/CFS (Myalgic Encephomyalitis/Chronic Fatigue Syndrome), although since that time, several other acronyms have been used to describe my illness, such as VICD (Viral Induced Central Nervous System Dysfunction) – a working theory of an Infectious Disease doctor from Stanford.
Q: How did you come to write the book?
Toni: I was completely unprepared for such a drastic change in my life. I was a law professor. I liked to travel to see my family. I liked to go on meditation retreats. I was active in the life of a young boy as his CASA (Court-Appointed Special Advocate). Suddenly, I couldn’t do any of those things. Despite years of Buddhist practice before I got sick, I fell into alternating states of denial, anger, self-blame, and even despair. We live in a culture that worships at the altar of wellness. It’s okay to get sick, but then you’re supposed to get better. Everyone expected that of me and I expected that of myself. Every night I went to bed expecting to wake up feeling like my old self even though for months and then years it had not been the case. So, in addition to my physical suffering I was suffering a lot in the mind. It took 5-6 years to find my way back to the Buddha’s teachings on suffering and to the many practices that can help alleviate these painful thoughts and emotions. Once I began to change my relationship to chronic illness, I wanted to share it with others, so I wrote the book. The book is not about my particular illness. It’s intended for anyone suffering from a chronic illness or condition.
Q: How has Buddhism helped you cope with chronic illness?
Toni: First, it’s helped me understand my suffering. Second, it’s helped me to work with the stressful thoughts and painful emotions that accompany chronic illness and chronic pain. I think of the Buddha the way the Dalai Lama does – as a great psychologist. He had a keen understanding of how the mind works. Everyone’s life has its unique mixture of joy and suffering. The Buddha focused on suffering because it’s a truth about life that we tend to ignore or turn away from. It comes from the Pali word, dukkha which really means dissatisfaction with the circumstances of our life. In the first noble truth, the Buddha simply stated that, despite our best efforts to avoid it, everyone has their share of dukkha – both physical and mental – meaning we’re all dissatisfied in some way with our life. For one thing, we’re in bodies and bodies get injured and sick and old. Dukkha for me has included this illness. For others it could be frustration on the job, tension in a relationship, a bad living situation, even frustration over not being able to find your car keys!
It may sound counterintuitive, but when I started to really take in this first noble truth, I felt a great sense of relief. Finally, someone was describing life in a way that fit a good portion of my experience. What a relief to know it wasn’t just me or just my life!
So, we’re all dissatisfied with some of the circumstances of our life – unless we’re enlightened, of course! In fact, that’s my own personal definition of enlightenment: not being dissatisfied with the circumstances of my life. Just imagine for a moment not being dissatisfied in any way with how your life is going – opening your heart and mind to the unpleasant stuff too; just giving up all longing for your life to be other than it is. Just for a moment, drop all that craving, all that desire. It’s a relief, isn’t it? Those “wants/don’t wants” (as I like to refer to longing or craving) will almost immediately pop back into your mind, but it’s a taste of freedom, a taste that lingers.
The bottom line is: We have the life we’ve got – with its unique configuration of joy and suffering. We can’t always get rid of bodily suffering – the Buddha experienced great bodily pain at times. But we need not add mental suffering to that bodily suffering. We can do something about painful emotions, such as worry, fear, anger, resentment. We can do something about this constant craving for things to be other than they are in our lives. We can do something about stressful thoughts that, when left unquestioned, can lead us to spin elaborate stories we tell ourselves about our life and our future – stories that have little basis in reality.
Q: How does the book address this mental suffering?
Toni: That’s the heart of the book – specific practices that help loosen the tight-fisted grip that painful mental states have on us. One way to do this is to bring them to awareness (sometimes called mindfulness), to expose them to the light where we can see them for what they really are – impermanent for one thing (thank goodness), and also not inherently a fixed part of our identity. We are not just our pain. We are not just our illness.
The book contains several practices, some Buddhist some not, that help us question the validity of our stressful thoughts – those stories we spin about our lives – that have little basis in fact (“I’ve ruined my partner’s life,” “My friends don’t care about me.”). I’ve been helped tremendously here by Byron Katie’s technique for questioning the validity of our thoughts (there’s a chapter in the book devoted to her work) and also by a couple of Zen practices that keep me questioning my assumptions. “Am I Sure?” I’m always asking (thanks to Thich Naht Hanh). Am I sure the doctor I saw doesn’t care about me? Maybe he’s terribly overbooked today. Am I sure my friend has lost interest in me? Maybe she has problems of her own.
And the book contains many practices to help loosen the grip of painful emotions. Since emotions manifest in the body, this can even help alleviate our physical symptoms. One way to loosen their grip is to consciously cultivate calm and gentle mind states such as loving-kindness, compassion (both of these for ourselves first), and equanimity.
Some Buddhist scholars even equate equanimity with enlightenment, saying that if we can be calmly present with both our pleasant and unpleasant experiences, riding the waves of life’s ups and downs without the constant craving for things to be other than they are, we’ll know complete peace. And then, as the Thai forest monk, Ajahn Chah liked to say: “Our troubles with the world will have come to an end.” (On this score, I’m a work in progress!)
Q: What challenges do you specifically address in the book?
Toni: Whether chronically ill or otherwise disabled, we face so many sudden and unexpected challenges.
Here are some I talk about in the book: coping with the relentlessness of symptoms and with the
disappointment of failed treatments; learning not to blame ourselves for being sick; overcoming fear about the
future; coming to terms with a life of relative isolation; handling being misunderstood or ignored by family or
friends; dealing with cursory or dismissive treatment from doctors or other medical people; and, for a spouse,
partner, or other caregiver, adapting to so many unexpected life changes.
Q: Do you have to be a Buddhist to benefit from the book?
Toni: No. The book is non-parochial. Many people, and I’m one of them, don’t consider Buddhism to be a religion in the traditional sense. It’s a practical path; it’s about how to live life day-to-day. The practices in the book will work for anyone, even for (as some reviewers have pointed out) people who are in good health!
If you have questions for me, just leave them on Annie’s blog. I’ll check it frequently and respond.
For more about the book and about me, here’s the link to my website (designed by my daughter!):
I feel like I have taken in more random pop culture tidbits than I can seem to remember this week. GO BRAINFOG!! Woot. Anyways, I will talk to you about what I remember seeing, and work from there!
This was one of the most amazing movies I have seen in recent memory. It’s completely brutal and completely over the top, but so self-aware!! An all-star cast populate this film, including Robert DeNiro, Jessica Alba, Michelle Rodriguez, and Lindsay Lohan. Most fun I have had watching a movie in recent months – definitely going right into permanent favorites! Not a movie for the conservative, but everyone else – RUN to see this movie!
Get Him To The Greek:
This was…okay. It had funny moments. I actually like Russell Brand, and I love him with Katy Perry! This movie was just too many drugs, too many moments of vomiting, and too over the top with no apparent purpose. If you are really bored, throw this movie on. But trust me, you will not be kicking yourself if you miss it.
I’ve been using this recently as my form of streaming music online. We don’t get to have neat things like Pandora in Canada, so this is my best option as far as I can tell. You can look up individual albums, what’s currently popular, or just play one of their custom radio stations. Right now, I’m listening to their custom rock – right now The Golden Rose by Tom Petty!
What are you enjoying in all of the art forms this week!?
Everyone on my twitter is going on about how they are addicted to stationery and I am no exception! Pens, markers, notebooks, thank-you cards, you name it! The ol’ pen and paper never let me down!!
(Images from WeHeartIt)
Does anyone else want to come forth as an addict?? We can only learn from each other!
- How I don’t remember sub cheese tasting as gross in the past as it did today! Yuck.
- Trying to remember something from my childhood and having it be totally gone, while everyone else in the room can remember the moment!
- That I feel other people’s feelings too strongly.
- Being too tired to fill out my sleep study questionnaire (oh the irony!).
- People. Drama. Anger. I have a LOT of it right now. I know, not a healthy emotion, and try to channel it into other things.
- Being diagnosed on the Aspergers spectrum, and yet having no idea how to find help to learn social cues and whatnot as an adult :/ (but thankfully Twitter friends helped!).
- Feeling torn .
(Images from WeHeartIt)
What is ticking you off this Monday?? I’ve been almost too tired to post this blog, so I’m sure other people out there need a rant!
I don’t see how I have not managed to see this awesomeness until today!
All is Vanity as a title and the double-image effect perfected! Yes please art! Thanks for always being inspiring!
This week I’m loving:
- Purring cats (even though I’m slightly allergic!).
- Sleep in those few precious moments I can find it.
- Beautiful sunrises.
- Lavender nail polish.
- Changes in scenery.
- My boyfriend – who has stepped up like a champ in terms of helping me with things around the apartment!
- Salt scrubs (and baths that go with it!)
- Gluten-free Chex cereal!
- New readers!
- Ginger ale.
- Shopping online (bought Toni Bernhard’s How To Be Sick!)
(in this case Fall!)
(Images from WeHeartIt, The Daily What, and Bug Comic).
What are the little joys you are grateful for this week?? Please share, it makes me so happy! This process of reflection has given my life so much more meaning
Fall has officially set in, and picnic season is over. I didn’t get as many of them in as I wanted, but the ones I did were wonderful (lookin’ at you love!).
(Images from WeHeartIt)
I am determined to not let the loss of bright skies diminish my spirit, as it so did last fall/winter. I can maintain summer picnic spirits in as many moments as mentally and physically possible (in such a serious medical condition). I am going to start projects (and work harder on finishing them!), and try to convince myself that pain doesn’t have to darken my light.
- Good health
- Good food
- Good friends
- Good surroundings
- Good ambitions
I’m going to let my daydreams take me away!
(P.S. I started LDN today – experiencing a lot of insomnia, nausea, and vivid dreams [when I do sleep!]).
A car alarm is going off right now outside of my window. Marvelous.
These are all things that have sounded better to my ears over the past week!!
How To Lose Friends and Alienate People:
I didn’t expect much of this movie, despite the fact that I love Simon Pegg (a lot). I didn’t even know Jeff Bridges was in it until part way through the movie! I really enjoyed this laugh-a-minute romp through the life of a guy with permanent foot-in-mouth problems. Definitely something to watch again! Laughter is the best medicine .
The Brave One:
I loved this story, despite the fact that I watched it mid-nervous breakdown. Jodie Foster does bad-ass like no other female in the movie business. Goes to show how violent acts simply breed more violent acts. You can’t even necessarily blame her for the choices she makes, as it is easy to insert yourself into the character’s shoes. The ending rocked my socks.
A Canadian show that I’ve been watching lately at my friend’s house, as all we get there is CBC. This is a show where inventors give a presentation and ask five notable rich Canadians to invest in them. The amount of hilarity and cruelty that follows nearly knocks me off of the couch every single week. Can’t miss.
What have you guys been watching/listening to lately?? I’m always on the lookout for new and exciting things!!
I need more light-hearted posts.
I avoided writing a post today. I had a horrible experience with my neurologist, as per usual. I’m so over it – he doesn’t even deserve to be talked about. Hence, no more neurologist.
I’m so sick that the bed I’m in feels like it is spinning.
Funny cat picture.