Desperate Hope Revisited – An Interview With Author Barbara Milligan
on her seminal book about breast cancer & God, and the its forthcoming new edition
by Gregory Slugocki
We wanted to take a minute and point you in the direction of this book: “Desperate Hope: Experiencing God in the Midst of Breast Cancer” by Barbara Milligan. Though out of print, it can still be found and is a rare resource for any woman of the Christian faith (or any faith) going through cancer, and in particular, breast cancer. The author Barbara Milligan is currently completing an updated edition.
In the book Barbara Milligan draws on her own experiences and her interviews with women in various stages of breast cancer. Each chapter gives a glimpse of what life with cancer is like. The book contains encouragement and practical help for breast cancer patients as well as for their families & friends. With so little written about cancer from a Christian perspective, we hope you take a moment and explore this book.
The author of Desperate Hope, Barbara Milligan, also sells the book directly from her website, Together Living With Cancer, that she co-hosts with Juanita Ryan, who is the author of Keep Breathing, another Christian-based book about dealing with cancer. Keep Breathing is available as a free download on the website. Copies “Desperate Hope” are still available “used” on Amazon.
Here is an excerpt from Barbara Milligan’s Desperate Hope:
“No matter what we believe about life after death, we tend to fear death itself—or specifically the process of dying. We’re afraid of how the intense, ongoing pain might feel when our bodies break down and quit functioning. We’re afraid of being confined to a bed and having to depend on others to take care of our every need. We’re afraid of having to say good-bye to those we love. Our fear of dying is useful in one way: it motivates us to do everything possible to survive. But it’s also an all-consuming power that only God can help us face. We need God to walk through that fear with us.”
We got a chance to speak with Barbara Milligan about “Desperate Hope” which she in in the process of updating now for a new release.
CH: Barbara, what is it that initially motivated you to write “Desperate Hope”?
BM: After my cancer diagnosis, I was suddenly having almost daily conversations with total strangers about their cancer, and especially with women who had had breast cancer. Those conversations were a huge gift to me during that dark time. The women really wanted to talk about their experiences, and I was enriched by listening to them.
My main spiritual discovery, in retrospect, was that God was with me in every moment of my cancer experience, breathing love and hope into the core of my being, even when I felt alone and despondent. A few years later, I wanted to write about some ways God had shown up for me, but I didn’t want to write an entire book about me. So I began interviewing women of Christian faith who were willing to talk about the range of emotions they felt, the prayers they prayed or didn’t have the energy to pray, and ways that God showed up for them. They described their feelings in every stage of their cancer experience, from the moment of discovering “something suspicious,” through the shock of the diagnosis and the long days of waiting for results, undergoing treatments, and waiting for more results, to looking toward a less certain future.
CH: What was it like interviewing all the women whose stories are included in the book?
BM: The women are honest, open-hearted, and aware of their feelings. Listening to their stories was a sacred experience for me, an experience of trust, intimacy, and God’s presence with us. I wept with each woman as she shared her shock, disappointment, fear, doubt, confusion, and sometimes anger. And together, we howled at hilarious misadventures with family members or the medical establishment. Several of the women told me that being invited to talk in depth about their cancer experience led them to new realizations about themselves or about God, or both. And they were eager to share their stories with readers.
In addition to interviewing Christian women who had breast cancer, I also interviewed the husbands of two of the women, plus the widower of my friend Karen, who had died of breast cancer at age 33. (Yes, she was part of my motivation.) One other person I interviewed was 21-year-old Janaha, who as a teenager had taken care of her dying mother. All of these dear people shared their raw feelings and the ways they experienced God’s loving presence in their darkness.
CH: Your book is Christian in its message and focuses on God & Faith in dealing with cancer. Is there something in your book for people of a different faith or who are not religious?
BM: The feelings the women describe are universal. So, it’s often easy for people of other faiths or no faith to relate to the women’s stories. The ways that the women interpret many of their experiences are not only through Christian lenses but also through the lenses of their own values and traditions. Even two Christian women might interpret a shared experience very differently. So I invite all readers to take whatever they find helpful, adapt it to fit their own needs and wants, and ignore the rest.
CH: What would you say to someone who asks “Why did God let this happen to me?”
BM: One of the women I interviewed answers that question by saying, “I got cancer because I’m human.” And that’s what I believe. The most expert theologians can’t agree on how to answer that question, so I don’t even try. But here’s how I can live with that mystery: Jesus is described in the Bible as a “man of sorrows.” He spent time with those who were suffering, he had compassion on them, he valued them, he addressed their questions, and he often healed them. And I believe he still does that today, usually through compassionate people.
CH: Cancer unfortunately can destroy a relationship; one of the chapters in your book is entitled “Keeping Our Relationships Intact”. Can you explain how you address that subject?
BM: Keeping our relationships intact when we have cancer can be an enormous challenge, because our family members, friends, and community are suffering with us. In addition to feeling afraid for us, they’re not sure what to say to us or how to help us. So they often hide their own fears behind masks of cheerfulness, false hopes, and denial of reality. Some friends or family members might pull back from us or disappear from our lives altogether, because our pain stirs up their own pain, which they find too difficult to face.
Sometimes we who have cancer might pull back too. We may not want to see the fear in other people’s eyes. Or we may not have the energy to face their well-intended questions, cliches, advice, or comments about how great we look.
One of the best ways we can maintain, and even deepen, our relationships is through gentle, loving honesty. By that I mean giving others an appropriate amount of information, sharing some of our feelings, reassuring them that we value our relationships with them, telling them some practical ways they can help us, and inviting those closest to us to share their feelings with us.
CH: What role do you think that spirituality can play in someone recovering from cancer in terms of them being able to accept the changes in their lives, and changes in their body, adapting to a mastectomy for instance?
BM: One key to making peace with the experience and effects of cancer is nurturing hope within ourselves. For Christians, hope is based on the belief that God created each person in God’s own image, that each person is of infinite value, and that God’s love for each of us is demonstrated in Son of God, Jesus Christ, who conquered all forms of relational brokenness and death. The gift of Jesus gives us hope that no matter what we must endure, God’s loving presence is with us, comforting us, strengthening us, and healing us. Our strength and healing may or may not be physical, but we are much more than our physical bodies, and our hope extends beyond suffering and death. This hope is clear in many stories in Desperate Hope, in which the power of love is shown even by people who are suffering and in some cases dying. That love in action shows us the power of hope.
For myself and for some of the women in Desperate Hope, accepting changes in our lives and in our bodies was a slow, grief-filled process. But that process eventually became manageable because we were trusting that God is good. While I still feel sad that I had to lose my breast, my sadness is manageable because I know that God is with me, understanding my feelings and giving me a greater sense of purpose in my life. I’m also able to see the experience of losing a breast as a small loss considering my many friends who have died of breast cancer. Those greater losses energize me to take meaningful actions—for example, by standing against the corporations that profit from exposing human beings to known carcinogens (cancer-causing agents).
CH: Your book is obviously written from a Christian perspective, and that being the case I was surprised to see that there are not one, but two chapters addressing sexuality: “Reaffirming Our Sexuality” & “For Husbands: Reaffirming Your Wife’s Sexuality”. You address sexuality post-breast cancer and the roles both a woman and a man play. Can you talk a bit about how a woman can reaffirm her sexuality and how a man can help her?
BM: I might combine those two chapters in the new edition I’m working on, because I wrote Desperate Hope for partners, other family members, and friends, as well as for the women in their lives who have breast cancer. I specified to the original publisher no flowers, no pink ribbon (which I have issues with anyway), no pink anything, for the cover design, so that no one, including men, would be embarrassed to be seen in public with the book.
Another footnote: In the new edition I refer in most cases to partners rather than husbands, so that no one feels excluded.
Now to quit stalling in talking about sex: Breast cancer, more than most cancers, tends to raise fears in women about becoming less sexual and less sexually desirable. And some of the fears are based on realities, such as the potential early onset of menopause, which sometimes occurs following chemotherapy and sometimes slows down sexual desires.
That happened to Margaret. She experienced sudden and permanent menopause at age 42, and she became angry:
Anger was really raging. I was angry at God, because I didn’t feel feminine or sexual and I felt I had lost a big chunk of who I was. I didn’t know how to express the anger, and I just turned it inward. It was like a whole big part of me had been chopped off and I was expected to keep going on. I still had this career I wanted to pursue, and yet the part of me that really mattered had been injured. I felt that even though I had won the battle of breast cancer, it had won in the long run, because it had taken a big part of who I was.
Margaret eventually talked to God about her anger and her grief, and she felt that God helped her work through her feelings to the point of seeing herself as a whole person again. But it was a long and difficult process.
Joan, who also was in her early forties, was fearful about what her husband thought of her:
That was something I really had to work through, and yet it was so amazing that George would tell me, “I still love you the way you are; I don’t care.” And I would say, “But I’m so ugly—no hair and I’ve got this stupid little thing on my head.” It amazed me what true love is, that he could just put all that aside; it didn’t matter to him. And I thought, Wow! I’ve got myself a gem.
The most important message I would give a woman who feels she is less sexual, less attractive, or less whole as a result of cancer treatment is this: “You are much more than the sum of your parts. You are complete. You are a whole person and a whole woman. You have warmth, wisdom, intelligence, strength, and an enormous capacity to love and be loved. You are worthy of love. You are infinitely loved and valued by God. But take all the time you need to grieve over your losses. Tell others, particularly your partner, what you need. And find ways to affirm your womanhood.”
To partners: Tell her what you love about her. Tell her in what ways you find her attractive. Tell her what you still enjoy about her body. And ask her in what specific ways you can affirm her as a woman and as a person. These are important things for her to hear. And to hear often.
CH: In the book you address seeking “God’s wisdom” when deciding on treatment options, and calling upon God to face those treatments and their side-effects. Can you talk a little about that?
BM: A cancer diagnosis is traumatic. We don’t know whether we’ll live or die or how our family members will be affected. So it seems like the worst possible time to choose a treatment plan that might save our lives. Fortunately, we don’t have to make those decisions alone. I believe God uses a variety of sources to help us choose our cancer treatments, sources such as oncologists and radiologists in our local medical clinic, books by medical clinicians and researchers, information from other cancer patients, and input from our families, friends, and communities. God also uses our thoughts, feelings, intuitions, and physical sensations to help us discern what is right for us. And God invites us to continually pray for wisdom as we assimilate all that information.
CH: On your web site in the book description there is this line: “Desperate Hope gives you the opportunity to ask God the hard questions and see beyond the darkness ahead.” How does one go about doing that?
BM: For me, some of the hard questions were, God, where are you?, What did I do wrong, so that I got cancer in spite of eating my broccoli and spinach and exercising regularly?, Why do I have to lose my breast?, How will my life change?, How will my relationship with my husband change?, and, Will this cancer kill me? I found it helpful to direct those questions to God even though I wasn’t sure I wanted to hear the answers.
I soon realized that I didn’t want to hear any answers from God. I simply wanted to know that God was with me in the darkness, the unknowing of both the present and the future. Often I didn’t sense that God was there. But later, I saw that God had been sitting with me in silence the entire time, giving me hope. Words would not have helped. But God’s presence was a demonstration of love.
CH: You are working on a new edition of “Desperate Hope”: How is that going and what will you be adding to the original version?
BM: I wrote Desperate Hope originally for an evangelical publisher, so I used masculine pronouns for “God” and referred to “husbands” rather than “partners.” Now, though, since I would like the upcoming digital version of the book to appeal to a broader audience, I’m using broader terms in my revisions, such as “God” in place of masculine pronouns referring to God, and “partners” in place of “husbands.” For those who would prefer the more traditional version, the original book is in print. And for those who would rather have the revised book, with the broader language, I would ask them to wait a few months, when a digital copy or a print-on-demand book will be available.
The new edition of Desperate Hope will include, for each chapter, suggestions for individual or group reflection. So, it will be appropriate for cancer support groups, as well as for individuals. And both editions include lots of specific practical tips for cancer patients and for those who love them.
CH: Barbara, thank for taking the time with us and in closing is there anything you want add, or want our readers to know about “Desperate Hope”?
BM: A cancer diagnosis is one of the most feared experiences of life. But when it happens to us or to someone we love, we don’t have to face it alone. Desperate Hope: Experiencing God in the Midst of Breast Cancer offers both spiritual and practical help for the journey.
Barbara Milligan’s updated edition of “Desperate Hope: Experiencing God in the Midst of Breast Cancer” will be available early 2017, we will keep you updated on the release date. You can visit her site website Together Living With Cancer and purchase a copy directly from her.
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