Authors: Toni Bernhard,Sylvia Boorstein

How to Be Sick (22 page)

Coping with the disappointment of failed treatments

▶
Open your heart to 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 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 the failure, remember that we’d never speak as harshly to others as we do to ourselves
,
as Mary Orr discovered. (See chapter 8)

▶
Repeat the loving-kindness phrases you’ve settled on
, directing them 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, serenity, compassion 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 . . . just drop it
, bringing awareness to the present moment.
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 “Let go a little” practice—taking a baby step toward peace and equanimity each time you repeat his phrases. (See chapter 9)

Handling caregiver burnout

▶
Take solace in the fact that you are not alone
; suffering is 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, serenity, compassion 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 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 immediately making contact 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 Orr discovered. (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
. (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)

▶
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 You’s, 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 wrote about her weekly trip to Davis so I can see my granddaughter, Camden Bodhi, who was born after I’d been sick for six years. Bridgett comes even when Tony is out of town and I may be too sick to visit for long. On those days, after she’s left, I’ll discover that the garbage has been taken out or that the dishes have been done. I see more of her now than I did before I got sick. 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. 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 joy.

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 to hear is “Hi Nana” over the phone once in a while, 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 she smiles at me. Cam is new life, fresh life. 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.

Dawn Daro
—my faithful friend. Our children grew up together, but then Dawn and I grew apart. When she learned I was sick, she called me and 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 recently 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.

Freddie Oakley, Jessica Sevrin, Nhi Nguyen, Jim Schaaf, Joan De Paoli,
and others in Davis who, in my absence, keep Tony company out in the world. They meet him for a chat over coffee. They go out to lunch or dinner with him. And they are the people I know I can call on in an emergency when Tony is out of town.

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.

Deans Rex Perschbacher and Kevin Johnson
—the dean and the associate dean of UC Davis School of Law at the time I got sick. (Rex has since returned to teaching and Kevin is now the dean.) 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.

Josh Bartok
—my editor at Wisdom Publications. Josh’s initial enthusiasm for the book and his encouragement all along the way carried me on days I felt too sick to complete the project. My only regret is that we have not met in person for surely someone so capable, perceptive, patient, and reassuring would be a pleasure to spend the day with.

Wisdom Publications
—a special thank you to everyone for their wholehearted commitment to the book—especially Joe Evans and Ernie Fernandez who worked so hard on promoting it. I’m also grateful to Phil Pascuzzo for his exquisite cover design and to freelance editor Barry Boyce, who so beautifully polished the manuscript in its final stages.

All my Dharma teachers
—from those I’ve met in person to those I’ve studied under through their books. Thank you for the gift of the Dharma.

Bibliography

Aitken, Robert.
The Dragon Who Never Sleeps

————.
The Gateless Barrier

Beck, Joko.
Everyday Zen

Boorstein, Sylvia.
Happiness Is an Inside Job

Buddhadasa, Bhikkhu.
Heartwood of the Bodhi Tree

Carrithers, Michael.
Buddha: A Very Short Introduction

Chah, Ajahn.
Food for the Heart

————.
A Still Forest Pool

Chödrön, Pema.
The Wisdom of No Escape

Collins, Steven.
Selfless Persons