Use Byron Katie’s inquiry to question the validity of stressful thoughts, such as “I would have had such a wonderful time at that event” or “I can’t stand to be left out of socializing.” (See chapter 12.)
Use broken-glass practice. Reflect on how all that arises passes away and so your ability to socialize and go to events was already broken. These changes will befall everyone at some point in life. This is how it has happened to you. Then remember to look after each moment, cherishing what you still can do. (See chapter 4.)
Craft phrases that directly address your suffering. Find words specific to the particular activity or gathering you’re suffering over and repeat them compassionately to yourself: “It’s so hard not to be able to join the family for dinner.” Open your heart to your suffering. (See chapter 8.)
Try looking at your disappointment the way Ajahn Jumnian would. If you were able to visit or participate, that would have been fine. You weren’t, so you’ll find something enjoyable to do that’s within your limits. Try Ajahn Chah’s letting go, even just a little — taking baby steps toward peace and equanimity each time you repeat his phrases. Work on giving in instead of giving up, by looking for what else you might do. (See chapter 9.)
Breathe in the suffering of all those who are unable to visit with friends or attend family gatherings. Breathe out whatever kindness, compassion, and peace you have to give. Because you share this particular kind of suffering with them, the thoughts that you breathe out will also be directed at yourself. (See chapter 11.)
As you experience the unpleasant mental sensations of not being able to engage in these activities, instead of reacting with resentment and anger, consciously move your mind toward the sublime state of kindness, compassion, or equanimity — directing the sublime state at yourself. You can also try moving your mind to empathetic joy — feeling happy for those who are able to have an active social life. (See chapter 10.)
Try saying, “This was an activity that I was able to enjoy for X years,” using the practice inspired by Susan Saint James (whose young son died). (See chapter 9.)
Reread the discussion about loneliness and solitude. If it suits you, explore the Internet for alternatives to traditional face-to-face relationships and activities, whether it be finding people who are similarly sick or people with whom you share non-illness-related interests. (See chapter 17.)
Feeling ignored by family or friends
Ask yourself, “Am I sure?” before deciding that they are consciously ignoring you. They may be busy at work or sick themselves or concerned that contacting you will exacerbate your symptoms. (See chapter 15.)
Consciously counter this painful mental state by taking the initiative to connect with those you feel are ignoring you. It’s unlikely they were intentionally ignoring you. (See chapter 8.)
Use Byron Katie’s inquiry to question the validity of stressful thoughts, such as “He or she doesn’t care about me” or “My family should call more often.” (See chapter 12.)
Check your own communication skills. Have you been complaining too much about your illness or going into too much detail about doctors and treatments? Can you find other subjects to talk about — shared interests and the like? (See chapter 16.)
If you decide you really are being ignored
Take solace in the fact that you are not alone; difficult and unpleasant experiences are present in the lives of all beings. Even people who aren’t sick struggle in their relationships with family and friends. Recall Joko Beck’s teaching: your life is always all right; there’s nothing wrong with it, even if you’re suffering. It’s just your life. The good news from the Buddha is that there are practices that can help alleviate your mental suffering. (See chapter 3.)
Repeat the metta phrases you’ve settled on, directing kindness at yourself. Then try directing the phrases at these people (they come under the category of those who are a source of stress in your life). It can be liberating to wish others well — to befriend them in your thoughts — even if they are being insensitive to you. (See chapter 7.)
Craft phrases that directly address your suffering. Find words specific to the particular difficulty at hand and repeat them compassionately to yourself: “It hurts to be ignored by those I love.” Open your heart to your suffering. (See chapter 8.)
Breathe in the suffering of all those who are being ignored by family or friends. Breathe out whatever kindness, compassion, and peace you have to give. Because you share this particular kind of suffering with them, the thoughts that you breathe out will also be directed at yourself. (See chapter 11.)
Try saying, “These were relationships that I was able to enjoy for X years” or “This was a friendship that lasted for X years,” using the practice inspired by Susan Saint James (whose young son died). (See chapter 9.)
If a painful thought persists about lost friendships, acknowledge the thought and then . . . drop it, bringing awareness to the present moment. Try three-breath practice to help you come out of your stories and calmly ground you in your body. Take a break from discursive thinking so that one simple thought doesn’t turn into a barrage of stressful ones. Try Byron Katie’s practice of stating what you’re doing physically right now: “Woman sitting at table, eating”; this will take you out of your repeating round of stressful thoughts and into the present moment. (See chapter 13.)
Work on giving in to what’s happening instead of giving up by looking to see if there are other people you can reach out to. (See chapter 9.)
Reread the discussion about loneliness and solitude. If it suits you, explore the Internet for alternatives to traditional face-to-face relationships, whether it be finding people who are similarly sick or people with whom you share non-illness-related interests. (See chapter 17.)
Suffering due to uncertainty about the future
Take solace in the fact that you are not alone; difficult and unpleasant experiences are present in the lives of all beings. This includes suffering over life’s uncertainty. Recall Joko Beck’s teaching: your life is always all right; there’s nothing wrong with it, even if you’re suffering. It’s just your life. The good news from the Buddha is that there are practices that can help alleviate your mental suffering. (See chapter 3.)
Try weather practice. Recognize that life is as unpredictable as the weather. Predicting the future is like predicting the weather. Remember Dogen’s verse — how the bitterest cold may be setting the stage for something joyful. Indeed, the future could hold a lot of sunshine. (See chapter 4.)
Try to keep a Don’t-Know Mind, reminding yourself that you don’t know how long any particular symptom or other concern will last. It won’t last indefinitely, and it might change sooner than you think. (See chapter 15.)
If a thought about the uncertainty of the future persists, acknowledge the thought and then . . . drop it, bringing awareness to the present moment. Try three-breath practice to help you come out of your stories and calmly ground you in your body. Take a break from discursive thinking so that one simple thought doesn’t turn into a barrage of stressful ones. Try Byron Katie’s practice of stating what you’re doing physically right now: “Man lying on bed, resting”; this will take you out of your repeating round of stressful thoughts and into the present moment. (See chapter 13.)
Use Byron Katie’s inquiry to question the validity of stressful thoughts, such as “I’ll never get better” or “The future only holds pain for me.” (See chapter 12.)
As you experience the unpleasant mental sensation of uncertainty about the future, instead of reacting with worry and fear, consciously move your mind toward the sublime state of kindness, compassion, or equanimity — directing the sublime state at yourself. (See chapter 10.)
Coping with the disappointment of failed treatments
Craft phrases that directly address your suffering. Find words specific to the particular difficulty you’re experiencing and repeat them compassionately to yourself: “It’s so hard to be disappointed yet again.” Cultivate patient endurance b
y trying to maintain a calm state of mind while also not giving up on the possibility that future treatments may help. If you’re blaming yourself for the failure, remember that we’d never speak as harshly to others as we do to ourselves, as Mary Grace Orr discovered. Disidentify from your inner critic. (See chapter 8.)
Repeat the metta phrases you’ve settled on, directing kindness at yourself to soothe you in your disappointment. (See chapter 7.)
Breathe in the suffering of all those who have been disappointed by the results of a treatment. Breathe out whatever kindness, compassion, and peace you have to give. Because you share this particular kind of suffering with them, the thoughts you breathe out will also be directed at yourself. (See chapter 11.)
When a thought about a past treatment persists (“I never should have tried it . . . I should have listened to my friend who warned me the treatment would fail”), acknowledge the thought and then . . . drop it, bringing awareness to the present moment. Try three-breath practice to help you come out of your stories and calmly ground you in your body. Take a break from discursive thinking so that one simple thought doesn’t turn into a barrage of stressful ones. Try Byron Katie’s practice of stating what you’re doing physically right now: “Woman lying on bed, reading a book”; this will take you out of your repeating round of stressful thoughts and into the present moment. (See chapter 13.)
Try looking at your disappointment the way Ajahn Jumnian would. If the treatment worked, that would have been fine. It didn’t, so that’s fine, too; it isn’t what your body needed. Try Ajahn Chah’s letting go, even just a little — taking baby steps toward peace and equanimity each time you repeat his phrases. Work on giving in instead of giving up, by keeping up on your medical condition so you’ll know if new treatments become available. (See chapter 9.)
Handling caregiver burnout
Take solace in the fact that you are not alone; difficult and unpleasant experiences are present in the lives of all beings. Recall Joko Beck’s teaching: your life is always all right; there’s nothing wrong with it, even if you’re suffering due to your extra responsibilities. It’s just your life. The good news from the Buddha is that there are practices that can help alleviate your mental suffering. (See chapter 3.)
Breathe in the exhaustion and frustration of all those who are shouldering the responsibility of caring for a chronically ill person. Breathe out whatever kindness, compassion, and peace you have to give. Because you share this particular kind of suffering with them, the thoughts you breathe out will also be directed at yourself. (See chapter 11.)
Try to keep a Don’t-Know Mind, reminding yourself that you don’t know how long your loved one will need this extra attention. He or she might even feel better soon. Turn to the poetry of Zen to soothe your exhaustion and to feed it the medicine of laughter. (See chapter 15.)
Open your heart to your suffering. If you’re feeling that family and friends could be helping more but aren’t, take compassionate action toward yourself by taking the initiative to connect with them. Often people are just waiting to be asked to help but won’t make that first contact. Cultivate patient endurance by trying to maintain a calm state of mind while also not giving up on the possibility that future treatments may help. If you’re blaming yourself for not being a good enough caregiver, remember that we’d never speak as harshly to others as we do to ourselves, as Mary Grace Orr discovered. Disidentify from your inner critic. (See chapter 8.)
Think of activities you could engage in that might be fun and relaxing for you or for you and your loved one together. Work on pacing. (See chapter 14.)
Look for ways to talk to others about subjects of interest that aren’t related to your loved one’s illness. (See chapter 16.)
If it suits you, explore the Internet to see if you can find support groups or blogs written by people who are also in the role of caregiver. (See chapter 17.)
Work on giving in instead of giving up, by being sure that you’re taking good care of yourself. (See chapter 9.)
Contemplate “Who am I?” to help shed the fixed identity of “caregiver.” (See chapter 5.)
With Gratitude
Mara Tyler — my daughter. Mara is the first person who told me I should write a book. Without her encouragement, I doubt it would have happened. She’s the person I turn to when I’m struggling with being sick and Tony isn’t available or I don’t want to burden him. She listens and responds compassionately. I feel heard, and that allows me to pick myself up and return to the practices in this book. I’m so blessed that she’s my daughter.
Jamal Bernhard — my son. Jamal takes me as I am and that relieves me of a tremendous burden. If I can visit in person, that’s fine. If I can’t, that’s fine. If I can talk on the phone, fine. If not, we’ll talk when I’m able. I can call him up, tell him I’m good for five minutes, and ask him to give me the scoop on the Super Bowl. He clocks in precisely at five minutes, we exchange love yous, and I hang up knowing exactly what to look for in the game. Jamal doesn’t treat me like I’m sick, and that makes our relationship truly special.
Bridgett Lawhorn Bernhard — my daughter-in-law. I can always count on Bridgett to be a compassionate presence for me when I feel the need to unload about being sick all the time. It means so much to me. I also love what a conscientious parent she is. And chatting with her is such a pleasure; she always makes me laugh. Since I became chronically ill, she has become a close and treasured friend.
Brad Tyler — my son-in-law. I rarely get to see Brad because his work keeps him in Los Angeles and my illness keeps me in Davis, but my gratitude runs deep. His wife may be an adult, but she’s still my daughter and I think about her well-being all the time. Brad is such a loving and devoted husband and such a hard-working provider for his family that his presence in my life gives me one less thing to worry about, and this brings me peace of mind.
Malia — Mara and Brad’s daughter. Malia was born five months before I got sick. She lights up my life even though I’m rarely able to see her. All I need once in a while is a “Hi, Nana” over the phone or an “I love you, Nana” in a text and my heart is full. I’m especially grateful to her for the good company she’s been for Tony, her papa. They adore each other and when he’s with her, his spirits are always lifted, giving him respite from his difficult role as caregiver for me.
Camden — Jamal and Bridgett’s daughter. Oh, that special moment when I come out of the bedroom and see that Cam is visiting. She’s growing up fast, but still brings young life, fresh life, into our house. She makes me glad to be alive.
Sylvia Boorstein — a founding teacher of Spirit Rock. Sylvia helped me learn to treat this illness with kindness and compassion. She also gave me invaluable support and help in moving the book from the manuscript stage to the publishing stage. My deepest gratitude to her is for the good friend she’s been to Tony since I got sick. Those of you who have had the good fortune to know Sylvia will understand what I mean when I say that being in her “presence” (whether in person, by phone, or by email) is like being sprinkled with angel dust.
Kari Peterson — my good friend who possesses such a sharp and perceptive editor’s eye. With the publication of this second edition, I’ve now been privileged to have Kari’s invaluable feedback on the manuscripts for all three of my books.
Dawn Daro — my faithful friend. Our children grew up together, but then Dawn and I gradually grew apart. When she learned I was sick, she called me and we began to visit once a week, even if only for twenty minutes. Her steady presence in my life enriches it tremendously.
Richard Farrell — an undergrad with Tony and me at UC Riverside in the 1960s. After being out of touch with each other for over a decade, he moved back to Davis. It has rekindled the deepest of friendships. We can count on him. I hope he knows that he can count on us.
Jennie Spotila — my cyberspace friend whom I’ve never even talked to. Jennie is among the top patient advocates for ME/CFS. The work she does in that regard is vital to everyone with
this bewildering illness. Jennie and I began casually emailing each other in 2015. Pretty soon we were exchanging emails almost every day. It has led to the deepest of friendships. We’re here for each other, sharing our joys and sorrows in this life.
Dr. Paul Riggle — my primary care physician, who (as I like to tease him) drew the short straw when my doctor unexpectedly left while Tony and I were on that trip to Paris and I was randomly reassigned to him. Let me count the ways he is a gem: he listens, he never rushes me, he’s open to new treatments, he’s up to the challenge of having a patient he cannot “fix,” he’s compassionate. All this while having a huge patient load and a family of his own. He is the gold standard for doctors. He has never let me down. Never.
Doctors Richard Bold, Megan Daly, Helen Chew, and nurse practitioner Karen Natsuhara of the University of California–Davis Comprehensive Cancer Center. I could not be getting better care.
Dean Kevin Johnson and former dean Rex Perschbacher of UC Davis School of Law. Until my body just plain gave out, Rex and Kevin did everything they could to accommodate my illness, from allowing me to choose the best time of day to teach to replacing some classroom duties with administrative ones that I could perform from the bed. I’m grateful for their efforts and support.
Deon Vozov — who narrated all of my books, including both editions of this one. Deon reads my books the way I would if I had the talent and the skill. I know how unusual it is for the writer and the narrator to be a perfect match. But we are, and this is why I think of Deon as my sister.
Josh Bartok and Laura Cunningham — my editors at Wisdom Publications. I’ve been doubly blessed. Josh was the editor for the first edition of How to Be Sick, and Laura was the editor for this new edition. Both of them embody the qualities of a buddha — generosity, kindness, patience, wisdom, and equanimity.
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