Spoonie Reads discussion

This is the discussion thread for our official book of the month, "How to be Sick". Beginning April 1st I will be posting discussion questions- but read at your own pace!

If you aren't interested in a Spoonie Related Read, please join our informal book chat for "The Book Thief," led by Brittie.

Has anyone read this book before?

I read it when it first came out and need to read again. I remember it giving excellent tools for and thoughts about living with chronic illness. Eventually want to read Toni's latest book, "How to Wake Up."

Hi everyone. I'm happy to answer questions about either of my books. And please don't be shy to talk about some practices or exercises, etc. that just didn't work for you! All my best, Toni

Author of "How to Be Sick" (and "How to Wake Up")

I wanna read it, maybe I can get some tips since my doctor won't help me.

I've wanted to read this book for some time now so I'm making plans to read it & think that it's cool that Ms Toni is willing to answer questions

It's hands down one of my favorite spiritual/health/self help-ish books I have read. It made me laugh, and cry, and I read it twice back to back when I first got it. I need to buy another copy probably, my well loved copy with all it's highlighting and dogears has been long since lost by a friend I loaned it to. I'm still hoping it will turn up soon though.

Toni wrote: "Hi everyone. I'm happy to answer questions about either of my books. And please don't be shy to talk about some practices or exercises, etc. that just didn't work for you! All my best, Toni

Author..."

Hi Toni, thanks so much for joining our discussion! One question I had is whether or not you have a specific practice/tradition you follow or are involved with, or if you just glean what benefits you as you go? I have been trying to get involved with a meditation group the past year or so (my mother and sister are Kadampa buddhists), but I can't quite help but feel the ritualistic side of joining a particular 'denomination' of sorts takes away from all the value I hoped to gain from that sense of community and encouragement from group practice. They're not as understanding about irregular attendance as I'd hoped, as well, let alone my disinterest in religion over the meditation practices themselves. Have you experienced this in your journey with mindfulness?

The particular practice (oh darn, I wish I hadn't loaned my copy off so I could flip to it and call this the right thing) where you feel gratitude YOU are the one carrying this burden instead of someone else- has had the biggest impact on me (all of them did to a certain extent but this stands out easily as it revolutionized my thought process toward chronic illness). It feels incredibly empowering to focus on the fact I am strong or experienced or capable enough of handling these experiences, along with the same thought as projecting that loving kindness that it is a burden I am glad my loved ones are not experiencing (which also whips me in line when people don't understand- I remember I am GLAD they do not understand). My biggest worry is that I interpreted some of these meditations wrong. Thank you for giving me this tool, I probably would not have come to this conclusion on my own for a long time without your wisdom.

While I know the quote itself is not yours, I would like to thank you for using the Wendell Berry quote to begin that chapter with. It really resonated with me and is a lifelong favorite now, and I have it printed and taped to my mirror. It's a really nice quick reminder to find peace where we are, when I don't have time to sit and reread the whole book. (For my friends who have not reached that point yet: "To go into the dark with a light is to know the light. To know the dark, go dark. Go without sight and find that dark, too, blooms and sings, and is traveled by dark feet and dark wings.")

I just ordered the book! I wanted to get a paper back copy because I have a feeling this is gonna be one I'll want to refer back to often!

Hello everyone. I'm so glad that some of you have read "How to Be Sick" and others are ordering it. And Devin -- that Wendell Berry poem is the only quote in the book I had to buy "reprint permission" to be able to use. It cost me fifty bucks -- well worth it! Thanks for writing it out for everyone.

As to Devin's question about Buddhist traditions. There is no "one" Buddhism. It's evolved over thousands of years into different traditions, some of them even secular -- not religious. In fact, I don't practice Buddhism as a religion but as a practical path. The Buddha was not a god. He was a human being -- although an extraordinary one to have had so much insight into the human condition and how to live a life of peace and purpose. Before it was discovered by Westerners in the 19th Century, Buddhism wasn't even considered a religion.

Today, there are so many schools. I steer away from those with a lot of rituals because that's not my style. I started out in the Theravadin tradition -- the oldest -- but now don't consider myself to be part of any one tradition. As those who've read "How to Be Sick" (or "How to Wake Up") know, I draw on any tradition that I think will be helpful. I quote Zen teachers, Tibetan teachers, etc. I'm looking to write about practices and ways to live that we can apply to our lives every day in simple but effective ways.

As to your second question, I think you must be referring to the practice where we work on being happy for others when they're happy. It's called "mudita" or "joy in the joy of others." It's a wonderful antidote for envy. I've struggled with envy and resentment since I became chronically ill, but I've learned that they are painful emotions that only make me feel worse and so, I work on enjoying other people's joy and, at times, their joy becomes infectious and I feel joy with them as if I'm doing what they're able to do.

Please ask more if that didn't answer your questions!

Warmest wishes to all,
Toni

How far is everyone into the book? I haven't gotten as far as I would like because of a flare, but so far it's really drawing me in! I have never considered how my own worldview and faith relate to my chronic illness, but from the reading so far I have realized that the way I view my illness is also related to how I view my faith/the world.

This weekend was gorgeous and I had the opportunity to sit outside, soak up some vitamin d and dive into this book. I'm into chapter 5 - so not too far

Toni, I have to applaud you so far. I've read several self help/chronic illness books and this one is hands down my favorite (and I'm not even done!). What I love is how relatable you make your story. Many books talk about techniques, but your techniques, and the way you explain them lining up in your own life, really resonate with me.

Some of my favorite parts so far:

1. In the foreword Sylvia quotes one of her friends saying "this isn't what I wanted - but it's what I got". I really love this because I think it's how we all feel. No one wants to be sick, but this is our life and we can either choose to accept it or succumb to it.

2. Toni, I LOVE your story about Marianne. What an inspiration!! There were so many months last year where I laid in bed making excuses for why I couldn't do things and then to read her story hit me hard! I thinks we all have to accept our dx in our own ways, but once we do we need to not let if affect our practices. While I have not had a specific 'Marianne story' I do feel the same way as you do in the way that I want my practice to help me live a "healthy" life and let it help me to help others. Do any of you have a story that inspires your journey?

3. Love that the point is made that life brings stress and suffering, but it also brings with it joy and happiness. When I started my blog this was a point I truly wanted to make "it's just a bad day, not a bad life". I think we sometimes focus on the things that we've lost or the things that trouble us and often loose sight of the amazing blessings we have as well. This is something that is extremely hard to grasp and is something that I work on every day... But is my mantra and when I'm going through a tough time I go back to it.

4. Oh I lovveeeee chapter 4. I love the bottom of page 28 "impermanence is the very condition necessary for life". I never thought about it in the way that without it rice wouldn't grow, a child wouldn't grow ... And Toni, you're SO right. I think every single one of us could give a list of at least 10 things that our illness has taught us!

5. Page 35 "I look after every moment, cherishing what I still can do, aware that everything could change in an instant". How true. How vulnerable. How powerful.

I could probably write about 10 other things I've loved so far, but I'll leave it at that for now! Hana and I'm sure I'll have some questions to ask you at some point! :)

Would love to hear what everyone else has been thinking and what you've thought of the points I brought up.


Ps. I'm so excited to be apart of this book club with all of you :)

Xoxo.

I calmed my migraine down enough so I could read this book.
I read the sample and loved it so bought the book.

I'm pretty excited to be owning this book to help with my new diagnosis.

I'm late to this party but I'm glad to be here

Oh dear. I wrote a long reply to to Julie's comment but I don't see it here this morning. Has anyone else seen it? I can't re-create it I'm afraid. I spent a half hour on it. I'm so sorry Julie. I wonder why it isn't here. Best to all, Toni

Awe, no I don't see it. I hate when that kind of thing happens! It's so frustrating!!!

Hi again, Julie,

Yes, I don't know where it went. I remember saying how moved I was that you mentioned Marianne. No one has before. I still think about her gentle face and her gentle voice.

And I mentioned how I learned about impermanence from Thich Nhat Hanh -- how it's the condition that's necessary for life. I found that comforting. We tend to not want things to be impermanent, but I like to say that impermanence can be our friend. I write about this in my new book, "How to Wake Up." It helps me not get discouraged when a symptom is particularly strong. There's no reason to think it will stay that way forever. That's just our mind spinning a stressful story.

I hope you continue to enjoy the book!

Julie wrote: "Awe, no I don't see it. I hate when that kind of thing happens! It's so frustrating!!!"

It's so true about adding stress to our lives by thinking nothing will ever change. I try to make myself always set REALISTIC expectations. Not always the expectations I want, but it makes it easier to swallow. I used to have a huggggeeeee huge huge problem with this - especially when I was healthy, right out of school and in the working world. It's a battle every day, but I think as long as we recognize this point it can help us except what life has to throw at us.

My library doesn't have the book so I won't be able to read it this month. It will be interesting to see what everyone things. I requested that my library order it, and they usually fulfill my requests, so hopefully I can read it sometime in the next few months.

When I can take a break from my migraines, I try to read a little bit. I am on chapter 6 and my favorite practice so far is the broken glass practice.

It seems like it would take away a lot of stress and anxiety by saying, "You can not prevent things that are breakable from being broken" and laughing and saying, " It was already broken"

Stress and anxiety definitely make my headaches worse so I am definitely implementing this.

Meredith wrote: "My library doesn't have the book so I won't be able to read it this month. It will be interesting to see what everyone things. I requested that my library order it, and they usually fulfill my requ..."

You can get the free trial audible book while you wait for it to be available at your library.

Brittie wrote: "Meredith wrote: "My library doesn't have the book so I won't be able to read it this month. It will be interesting to see what everyone things. I requested that my library order it, and they usuall..."

I've already done an Audible free trial, they only let you do it once.

Hi all,

Toni has an excellent blog in Psychology Today and if you friend her on Goodreads you will get links to it. The current one is taking a look at some of her most read items.

Thanks Betsy!!

I love the section about equanimity. I did to practice that also.

Just last week, my doctor told me to be spontaneous and go to NYC. I told him last time I went, I fainted and he told me to just drink water and laughed.

I just bite my tongue and keep it inside but sometimes those comments really hurt.

I wish things were that simple. People make comments to my mom about me, so I am definitely going to have her borrow this after me.

Hi Brittie,

Your doctor's comment reminds me of the one who told me to just drink coffee. It's so hard to have to listen to those comments. I'm so sorry. His laughter is worse than his comment. It's equanimity practice that gets me through moments like this. When I feel helpless to change someone, I just repeat to myself that some people will come through for me and some won't.

I write about this more in "How to Wake Up" because cultivating equanimity has become even more important and helpful to me than when I wrote "How to Be Sick."

All my best to you, Toni

Brittie wrote: "I love the section about equanimity. I did to practice that also.

Just last week, my doctor told me to be spontaneous and go to NYC. I told him last time I went, I fainted and he told me to just d..."

Hi All,

I know I'm a bit late to the party but I finally got my hands on a copy of 'How to be Sick' last week and spent the weekend reading it.

Thank you Toni for sharing your experience with the different techniques and practices. At this stage in my illness (just over a year in) I found several of the practices resonating with me. In particular, the Inquiry Practice where you use the four questions to test the validity of your thoughts will be very beneficial for me as I often finding myself thinking up (and believing) different reasons why my friends don't get in touch often or what I think my husband expects of me. Already this practice has helped me reassess some of these feelings.

Like Brittie, the Equanimity practices resonated with me as a way to feel more comfortable or calm in situations I have no control over.

The quote that really stood out to me was "There is sickness here but I am not sick". This is how I've been trying to look at this illness since a few months in, as a way of coping with it in a positive way.

Finally, the LovingKindness practice really resonated with me and I have come up with my own phrases based partly on Toni's own phrases and partly on other meditation mantras that have resonated with me since getting sick:

"May I be peaceful and true.
May I have an open heart and open mind.
May I be free from all suffering."

Hi Megan,

I'm so glad to see that so many parts of the book resonated with you, and I love your lovingkindness phrases, especially having an open heart and open mind. Just beautiful.

I still use Byron Katie's inquiry practice all the time. In fact, I'm working on a new book on chronic illness and it's going to find its way -- somehow into it.

And, saying to myself "There is sickness here but I am not sick" is still incredibly helpful to me.

Thank you so much for this wonderful feedback!
With all warm wishes,
Toni

I feel differently about "There is sickness here but I am not sick." I mean, I AM sick, and because of that I need certain things and have certain limitations which need to be considered. Denying that I'm sick is denying a huge part of my life. Being chronically ill, being disabled, is a part of my identity. I am sick, but sick is not all that I am.

Of course I haven't read the book yet, and we all have different language associations, but I wanted to comment on that.

There's a phrase that's really resonated with me for a long time, not sure where I first heard it, "Pain is inevitable, suffering is optional."

Meredith - You make an excellent point and I like your version of my sentence. What I was saying is that there's sickness in my body but my mind is not sick. In addition, I was trying to indicate that we who are sick in body are still whole and complete people. But...one cannot write a book and have every sentence resonate with everyone. I'm glad you provided an alternative.

I have my own version of your last phrase and that is: sorrow is inevitable; suffering is optional. It's a reference, of course, to our minds and is a principal theme of my second book, "How to Wake Up." We'll all have our share of sorrow in life -- loss of friends and family, even our illnesses. But suffering, which comes from the desire for things to be otherwise when you have no control over how things are, is optional.

Thanks for your comment.

All my best,
Toni

Thanks for the explanation Toni as that confused me too. Your last sentence re suffering reminds me of the explanation of stress I recently heard - that it is when things are not what you want them to be. I'd always thought I wasn't under stress but that explanation sheds new light on it, because I still desire things to be other than what they are.

I have also heard the phrase:

Suffering = Pain x Resistance

Hi Betsy. It's interesting that the word I'm using, "suffering" comes from the Pali word (the language of the Buddha), "dukkha" and some Buddhist teachers translate dukkha as stress. I think I indicate it's an alternative word in both my books, but perhaps just in the new one. I'm glad the comment clarified my thinking for you. Others here, including you, have so much insight!

Toni wrote: "Meredith - You make an excellent point and I like your version of my sentence. What I was saying is that there's sickness in my body but my mind is not sick. In addition, I was trying to indicate t..."

Hi Will,

I like this and it reminds me of a quote from Pema Chodron: Suffering is just resistance to life.

Warmest wishes,
Toni

Will wrote: "I have also heard the phrase:

Suffering = Pain x Resistance"

Betsy wrote: "Thanks for the explanation Toni as that confused me too. Your last sentence re suffering reminds me of the explanation of stress I recently heard - that it is when things are not what you want th..."