How To Be Sick: Discussion 3

“Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”
-Zen teacher Charlotte Joko Beck

As we begin reading the section of the book titled Accepting Pain, we are introduced to The Four Noble Truths. The Four Noble Truths explain the nature of dukkha (often translated as ‘suffering’), its causes, and how it can be overcome. “To capture the essence of what the Buddha meant by the presence in our lives, it’s helpful to keep other possible translations of this key word in mind: unsatisfactoriness (that is, dissatisfaction with the circumstances in our life), anguish, stress, discomfort, dis-ease, to name just a few. Dukkha is a term worth becoming familiar with, especially when exploring how to be sick.”

We then move on to read about the universal law if impermanence, which is recognized by many spiritual traditions and science as common factor to the life of every living being. “Anything can happen at any time.” “Everything is impermanent.” “Life is impermanent, uncertain, unpredictable, ever-changing.”

Sentences which bought a big smile to my face: “…when I needed to go somewhere off the bed, I crawled. Our dog, Rusty, was delighted to see this. He acted like I’d finally seen the light and was going his species. This appeared to be a cause for great celebration on his part, so my challenge became to make sure that is his exuberance he didn’t step on my right foot.”

Discussion Questions

  • Have you been able to trace a feeling of dukkha back to the fact that you’re not getting what you want, or that you’re getting something you don’t want? If you have been able to map this connection, have you been able to let go of the “want/don’t want,” even if just for a moment? How did this make you feel?
  • Through the universal law of impermanence, have you been able to turn something that your previously considered to be a negative aspect of living with chronic illness into something that you now consider to be a positive part of your life?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

22 Comments
22 comments
  1. RA Guy says:

    As always, I post the discussion questions shown above as a guide. Please feel free to introduce your own discussion topics and questions!

  2. Leslie Cizewski says:

    “It’s just our life”. This thought has been going through my head for 2 weeks now and has been a huge factor in my first step to acceptance.

    Reading the beginning pages of Toni’s onset, symptoms, thought process and Diagnosis, I see so many similarities in my own story.

    Learning the meaning of The Four Noble Truths and Dukkha, I see my illness a little differently. It’s just our life. Plain and simple. How we accept it is the important part.

  3. MamaNym says:

    Seeing as I should be sleeping, I’ll make this brief (if that’s at all possible with me!) and come back to the discussion later…

    Dukkha for me comes from not being able to do as much as I want for others and with others. Losing connection with others causes me great sadness at times.

    I’ve spent the past year re-framing what could be perceived as the negatives of my PsA, AS, etc. into positives. This is my life. This is going to be my life for the rest of my life. Slowing down has brought to the forefront exactly what is and isn’t important in my life, and has helped me live more in the moment than I’ve ever been able to before. Using canes has actually added more whimsy into my life – I have black canes with purple handles, and have colored my hair to match the handles (I do often wear black … and purple for that matter). Ziggy (my wheelchair) and I have a wonderful time being out and about and we’re currently seeking bumper stickers, magnets and such to make Ziggy a bit more unique. The dietary changes I’ve made due to my recent celiac diagnosis have taught me a lot about my relationship with food and ways to eat and be as healthy as I can be. My PsA, AS, celiac and other diagnoses have vastly improved my life, my perception of my self (I’m not crazy … well, I may be crazy, but I’m not imagining the pain, swelling, exhaustion, gi issues…), and how greatly I value living life, instead of just muddling through.

  4. Leslie Cizewski says:

    MamaNym, I no longer wear makeup so I now buy fancy glasses. My newest pair is a Juicy Couture purple frame with a spinning purple jewel on either side. I also occasionally have a purple or pink stripe in my hair ;) and cane is purple with flowers all over it ;) I totally get it!

  5. MamaNym says:

    I haven’t worn makeup in years. Those glasses sound fabulous! I’m due for a new pair soon – I must find something purple and fun! I’m lusting after purple paisley palm grip canes, and may treat myself to them after getting paid today (I’m babysitting 5 kids from 3 different families today – plus have my five homeschooled kids – this should be interesting!). A year ago I’d never have guess I’d be lusting after canes, but such is life! ;)

  6. Mombeenthere says:

    When I became ill, I already knew my diagnosis, many medical problems ensuing with hospitalizations and surgeries that “snowballed” into my life. I had not read this book yet but every time someone asked how I was doing I would reply, “I never ask what’s next!” basically I didn’t want to know. Life was getting very scary and depressing. This is the best example of weatherman/want/don’t want all wrapped up into one…that I have experienced. These 3 chapters explained what was happening to me. Explaining it in a different way which made me understand more completely. Now I can better cope with the ever changing madness that my body is going through…I just found out this week that I also have Primary Immunodeficiency (PI) meaning I have low to no IGG which means no Rituxan since it would further set me up for serious infections. In blows another “what’s next” and definitely a don’t want (the complications) but I really “do want” the Rituxan because I know it works to help with my pain and RA. So I look forward to the end of this dukkha and the lesson plan to accomplish this.

    “Anything can happen at anytime.” (impermanence) reminds me of what most of us call “Murphy’s Law”. Toni I can really relate to you getting sick and not getting better, having to give up a loved profession (something that defines who we are), being confined to home, bed, and hospital. All this has happened to me in less than a years time. The impermanent weather has been storming through my life. Realizing that very few of these things were going to change (blow through) I need to learn how to turn these life events into a positive. Now in the morning I sit in the kitchen with my coffee talking to my 14 yr old daughter as she gets ready for school…this gives my meds time to work. At night I go to bed earlier giving me more quiet time to read and clear my head for a restful night’s sleep. My daughter is still up at this time doing homework but it’s making her more responsible for herself and what she needs to be doing including going to bed at a reasonable time. I’m always available to her if she needs me but she knows how wiped out I am and tries hard to work through things on her own. These are just a couple of positive changes most of the changes that need to happen relate to me and my health. This is what I am continuing to hope for through Toni’s book and experiences. There seems to be a lot of similarities in our lives.

  7. Evin Fox says:

    Doing for others–part of the dukkha comes from that for me. The other part comes from what I perceive as people judging me for not “bouncing back.” My sister said to me the other day, “Well, at least you’re not in the grave.”

  8. Amy Clifton says:

    Before I became chronically ill, my life was very active and I did a lot of outdoor activities like hiking and bicycling. I definitely experienced painful dissatifaction and emotional suffering when I became too ill to do those activities. Although I wasn’t in pain, I was confined to bed with fevers and headaches for over 2 years. It was during this most difficult time that I read Toni’s book and tried to apply the suggestions she made to my own situation. Before, when my partner would go out for long walks or on hikes by himself, I suffered from not being able to do/get what I wanted, which was to hike with him. But when I learned to let go of the wanting and just settle into things the way they were with acceptance, I was able to relax and get even get some pleasure from knowing he was out enjoying himself and I could enjoy time alone. I was also able to enjoy his hikes vicariously as he would take wonderful photos to share with me and also bought a device that recorded his hike in real time so that I could follow his path while he was out there.

    As others have said, having a chronic illness has forced me to slow down and appreciate the things that are most important in life. Now that I have stopped working I have more time to spend with my grandchildren. I have time to listen to audio-books and podcasts. I focus on the things I can do rather than the things I cannot do.

  9. Amy Clifton says:

    One more comment on impermanence.. My chronic illness, PBC, was diagnosed 9 years ago and I was dealing with it on an ongoing basis. I expected things to get worse as time went on, but I didn’t expect to get so sick I could not get out of bed. When I developed “fevers of unknown origin” and uveitis and finally “auto-immune meningitis” I worked on acceptance but at the same time I never gave up hope that either my doctors would come up with a treatment that might work or the condition would go away as suddently as it appeared. It took 2 years and many attempts at treatments which worked with varying degrees of success..some didn’t work at all…until finally the fevers and head aches disappeared. I still have the underlying PBC which is not likely to improve, but I have learned to expect the unexpected, both the good and the bad, and try to approach whatever occurs with equanimity…N.B. with varying degrees of success! I do understand impermanence better than I ever thought I would.

  10. Summer Day says:

    I wanted to comment on other definitions of suffer;
    Merriam-Webster 1.b “to feel keenly”. I would like to offer the paradox, to feel joy we must also feel keenly. Blessings.

  11. Mombeenthere says:

    Amy, I agree with you whole heartedly about changing perspective for the positive as you have done….it is still a work in progress for me. I would like to experience more joy from other people’s activities, but sometimes it’s really hard because these were activities that I once relished. It’s not so much envy, as it is feeling the loss, anger ect. I’m sure this will be a life’s journey for me…choosing a path and maybe even revisiting a path later for greater insight. I too have stopped working outside the home. I still miss the contact with my patients. I learned much about life from them, for this I am very grateful. I remember an elderly lady I was taking care of in the ICU about 15 yrs ago. She asked me if I was married. I told her yes 10 years…she had been married for 60 years and told me her secret was perservance and compromise. She took my hand and reassured me that my husband and I could do it and not become a divorce statistic. I came back to work the next night,she had passed on…complications from RA. I’m still married and have always remembered that last message to me from her life. I use perservance and compromise in dealing with the fallout from my RA too in hopes that I can be as successful as my marriage has been so far (26 yrs).

  12. Mombeenthere says:

    So much of what we all endure with our chronic illnesses is such a serious matter I think it’s great you’re finding ways to lighten your life and have more fun with the easy day to day things. We need to start a list of these easy, crazy, fun items or activities to distract us when life doesn’t seem to be as such.

  13. Amy Clifton says:

    No way is it easy to accept, but I’ve learned that acceptance makes me feel better than anger does. I’ve come to treasure my 30 to 45 minute walks by the seashore almost as much as my 5 mile hikes up in the mountains. And I reward myself with a hot aromatic bath afterwards..

  14. Nancy Aurand-Humpf says:

    Since I have been reading and learning about Buddhism over the last few years my life has changed for the better. Changing my thoughts has taken work though. I often recognize how my wants and desires cause needless dukkha, but still emotions arise from not having those needs met, and I have to go through a process of re-deciding and letting go. It is not always easy and takes time: habit energy.

    I like the part in chapter 3 where Toni quotes Joko Beck: “our life is always alright, there is nothing wrong with it.” I used to get very exasperated with children who would stare at my daughter in her wheel chair when we would be out places. I never liked when parents scold their kids for staring, so I would usually try to strike up a conversation first. Invariably they would ask me “what’s wrong with her?” I was very relieved when my daughter was old enough to answer that question for herself, but I do remember one particularly bad day when I told a child “there is nothing wrong with her, she is just sitting down”.

    There is beauty in impermanence. I have come to see this so clearly with my daughter’s fragile health. I think she is like a beautiful flower, so sweet, delicate, unique, and beautiful precisely because of her transitory nature. Who would prefer a plastic flower, to the real thing? We are all like that : so precious, because of impermanence.
    I am learning to carry with me my sadness over my daughter and my own illness like a passenger. It is always there, some days more than others, sometimes waiting in the wings. Sadness to me seems vastly different than depression. I can see the beauty of it, depression is just hollow. Sadness seems to create room for me to recognize joy also, even when I feel bad physically. One day when I had a migraine, my husband came home from work and said “I’m so sorry you’ve had such a bad day”. I had to apologize because I quickly admonished him by saying firmly : ” I didn’t have a bad day, just a painful one!” There has been a shift in attitude about how I view my life, though I still struggle.

  15. Nancy Aurand-Humpf says:

    Mamanym and Leslie, My new fashion statement will be FL 41 rose colored lenses from the University of Utah, designed to cut out a frequency of light that causes us photosensitive types to get migraines. I wonder if they will give me a rosy outlook on life? Time will tell.

  16. Mickey says:

    For ten years after I became too ill to work, I could not get disability and had absolutely NO money. Thankfully, one of my daughters took me in and fed me, but she didn’t have much money either so things were often hard. As the years went on, my clothes became ragged, all my “stuff” was broken and medical care was sometimes hard to come by. I did a lot of “suffering.” Then somewhere along the way, I learned to “sit in the moment.” I realized that, in this moment, I have everything I need and that fear of want in the next moment was a kind of suffering I didn’t have to accept. Life got a lot easier with that realization. And as a bonus, I learned the difference between “need” and “want” when it comes to material things. Now I have a tiny income and for the first time in my adult life, I find I have all the money I need! Now I’m looking for to learning how Toni came to accept the permanence of her illness.

  17. Mombeenthere says:

    Amy, your activities sounds absolutely wonderful. I’m jealous but I am happy for you that you can still do these things. Just the mention of these types of activities makes me feel warm inside.

  18. RA Guy says:

    A year ago this month, during my WFE (worst flare ever!), I was really struggling…not only with the actual pain and disability, but also with my thoughts and emotions. It was during this time that I told myself *something* had to change…and if my pain and disability wasn’t going to change, then I’d just have to change my reaction to it. It was only once I decided to go down this path that I realized how much time and energy I was dedicating to trying to make the pain go away. When I started focusing instead on trying to improve my coping skills, and on trying to accept the pain as much as possible, this got much better. Sure, the pain and disability was still there, but I finally felt ‘complete’ again. Being introduces to the concept of dukkha was interesting; it really explains so much of what I’ve been figuring out over the past year.

    One thing that has really driven home the idea of impermanence is Shinzen Young’s “Break Through Pain: A Step-by-Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain.” When it feels like the pain had completely grabbed hold of my body, I often practice a meditation titled “Working With Local Intensity and Global Spread.” With this meditation, I’m able to differentiate between different intensity levels around my body. This can initially seem impossible, when it just feels like overwhelming pain *everywhere*, but once I start differentiating these levels, the hold is has on my begins to break up…and instead of feeling like my pain is one monolithic thing, I can really begin to see it as a group of different sensations.

  19. Summer Day says:

    Nancy, Thank you and I happy this was helpful to you. I believe Chronic illness is most difficult mentally by far more so, than any other part of it. This is why Toni’s book is so wonderful!

  20. Kate @ Cooking with Arthur says:

    Going through a massive flare at the moment, and I’ve had to reassess what I thought were pretty good coping skills so this is all very timely – thanks for the discussion.

    I really like the way you sum up accepting that we can’t always beat the illness, so sometimes what we can change is how we experience it. I actually think people with chronic illnesses learn to accept impermanence sooner than our peers and for me, it’s been one of hardest but most important lessons.

    .

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