Voices of Truth and Hope from Mothers with Cancer
©2006 All Rights Reserved
PART ONE BREAKING SILENCE: LIVING WITH PRIMARY ILLNESS
One “Water in a Desert”—A Chorus of Mothers
Two Holding Patterns
Three “Secrets Make You Sick” — Diana Loew
Four “Cancer Saved My Life”— Marge Schmitt
Five “You Can Go Through Anything” — Lorraine McKinley
Six In Limbo: The Post-Cancer Experience
PART TWO LIFE ON THE EDGE: LIVING WITH RECURRING ILLNESS
Seven When Fear Becomes Reality
Eight “I Want to Be a Warrior” — Sara Markowitz
Nine “My Value As a Mother Is Just Being Here” — Tina Salomon
Ten “You Get What You Get” — Julie Renaud
Eleven “Christmas is Every Day Now” — Janet Johnson
Twelve “The Story Has Not Ended Yet” — Carrie Arnold
PART THREE LIVING LEGACIES: BEING WITH DYING
Thirteen When the Time Comes
Fourteen “A Soul on Vacation” — Leona Reardon
Fifteen “In Your Best Interest is Peace” — Annette Nisewaner
Sixteen “I’m Just A Ball of Fire” — Reiko Garcia
Seventeen “Make Every Day Count” — Dorothy Greenwald
Eighteen New Stories of Motherhood
Epilogue Walking On
These excerpts are under copyright and may not be used for any purpose without written permission from the author and Seal Press.
FROM THE INTRODUCTION
Perhaps you’re a mother, a mother whose life seems to stretch out before you like a purple ribbon waving in the breeze. Everything appears possible for you, for your family. But one day, life changes without your permission. Suddenly, you can no longer rely on your beliefs about the way things are. You can no longer promise your children a secure world and a positive future.
It might be a diagnosis of cancer, heart disease, multiple sclerosis, or some other illness that alters your world. Or your marriage ends. Or you get a pink slip with your paycheck and there isn’t enough to cover next month’s rent, or you wake up one morning so depressed you can’t get out of bed. Whatever the cause, you are a mother, you will do anything to protect your children from suffering, and you feel responsible. You tell yourself you’re only human—vulnerable and scared. But mothers are supposed to be strong. Your story isn’t supposed to turn out this way, and that is really hard to talk about.
Maybe your life hasn’t been disturbed by a personal crisis. Maybe you heard one too many stories about a child abduction, a school massacre, a mother your age who became critically ill or died, and all of a sudden, you can’t shake off the tremors of anxiety. You realize how tenuous life is for all of us, and you can’t shield your kids from that knowledge. When one of them asks, “Mom, that won’t happen to us, will it?” you reply, “Of course not!” but certainty fled a long time ago.
Or it might be that your own mother died before you had a chance to know her, before you thought to ask her the questions that would unlock the secrets of her life and yours. Perhaps you were young when she died and you’ve never stopped wondering what she went through, what she might have said had someone just asked. Why didn’t anyone ask her? The ache of being motherless is compounded by another loss that few speak about: the loss of her story.
The story of motherhood has holes in it, the holes of unanswered questions: How do mothers go on living and loving with shattered illusions? How do they help children feel protected when their own security is threatened? How do they “get back to normal” when they no longer know what normal is? Can mothers ever be seen as both strong and fallible, as whole human beings? Why do we ask so much of mothers and so little about them?
The mothers you will meet in this book have lived with these questions. They have grappled with two of life’s greatest challenges—mothering and mortality—and have done so in a culture that avoids talking about death or acknowledging the underside of motherhood. They are ordinary women who have had to respond to every mother’s nightmare: a cancer diagnosis while raising children. Seriously ill mothers know what it’s like to feel betrayed by life. They also live with the knowledge that they might default on the promise to care for their children until adulthood. As one mother said, “To raise a child while living with cancer is to have your heart break. We have to learn how to live with broken hearts.”
Sooner or later, all parents have to learn how to live with broken hearts—and teach their children to do so, too. Mothers with cancer have wisdom to offer those coping with turbulent times from any cause. Their experiences are equally valuable for those who love a mother who is going through a life-altering illness, and for those whose mothers died early in their lives.
Why cancer? Because it seems that we all know someone who’s been diagnosed with it. Because cancer still carries greater fear and stigma than most diseases. Because people driven to the edge of existence can be our best teachers, giving us new perspective. These are the women who have inspired this book—mothers living with cancer while raising children. Each one has a story, a voice larger than her embattled body, and an important message to deliver. But often, it is difficult for others to listen.
FROM CHAPTER THREE: “SECRETS MAKE YOU SICK” DIANA LOEW
So many people have said to me throughout the whole thing, “You handled it so incredibly!” “You did such a job, you’re so strong! You just went through the whole thing!”
What do you think I would have done? [With some irritation] I had two kids at home. What would the alternative have been? To just plain succumb to it? To whine my way through it? Other people will say to me, “I don’t think I could do that.” I disagree. I think that you could if you had to—if you have children and care about being their parent and care about your own survival.
I believe that each of us has a deeper well of strength from which to draw than we know. It’s amazing what we can face if we have to. I’ve had to dig deeper than I ever knew I had available to me, and I’m kind of amazed. I’m grateful to know that about myself. It’s a dubious gift, this disease, but there are many ways in which I feel much richer and wiser and more knowledgeable about myself.
And it’s been a gift for my children. I was the sort of mother when they were very tiny who wanted them to have a fairy-like magical kind of childhood. I didn’t want them to have to experience terribly tough things. I’m not overlyprotective. It’s not like I won’t let them do anything physical or I don’t want them to struggle. But I think I’m logically protective; I wanted to cushion their young lives. Even after all these years of working with children, I was taken aback that they would have to struggle with something like this so young.
My thinking has changed through these several years of cancer. Probably to take a 180-degree turn. It’s not like I’m out there looking for tough things for them to do, but I’m grateful in a bizarre way for them having had to go through this. And I’m eagerly pushing them in places now that challenge them a bit. Katie being the shy kid that she is, I think it’s great when she has to stand up in front of the class and give a talk or go to someone’s house that she hasn’t been to before. What’s been wonderful to watch is she might go in kicking and screaming or terrified and anxious, but she’ll do it. They both are learning something about having to push themselves through something that’s hard.
FROM CHAPTER EIGHT:" I WANT TO BE A WARRIOR" SARA MARKOWITZ
Ben’s a very deep thinker and very intuitive. When I was diagnosed the first time, he was three and had a lot of questions about why he couldn’t jump on me like he had before. Eli was just one, so I didn’t communicate a lot with him about it. I wrote Ben a little book, Ben’s Mom and the Bad Guys, and he liked that book a lot. I wrote down that Mom is fighting these bad guys. I did not name it “cancer” at that time. I said that there are going to be some times when Mom is tired, or when she has to go to the doctor, or go to the mommies’ groups, or talk on the phone. I don’t remember him being extremely upset about it, but he absolutely questioned where I was going. He wanted to know, and I wanted to tell him.
So, when I recurred, what I said to him was, “Benji, the bad guys are back, and I want to tell you now it is called ‘cancer.’” And he said, “Is it in your boobies again?” They know my breast is still very sensitive, and my arm, and they know not to wrestle with me because we do a lot of roughhousing, and they think I’m a gymnastics mat [Laughs], but they keep the left side off-limits. And I said, “No, it’s inside my lungs. I’m going to take some medicine, we’re going to fight these guys, and I hope that maybe you can help me. Could you make me a picture? I want to be a warrior.” Because we used to always say, “Ungawa! Mama’s got the powa!”
I think that my mind has shifted into saying, “I can control only what I can.” I’m going to take care of myself. I’m going to let my children know how much I love them and how many people love them, and I’ll assure them that they’ll be taken care of. Because now, when Ben says to me, “If you die, who’s going to take care of us?” and “Mom, you can’t die until I can take care of myself,” a lot of parents might say, “I’m not going todie.” I don’t think I’m going to die, but I can’t say that any more, and I’m not going to lie to him. I think it’s okay for me to say, “You know, if I were to die, there are so many people that love you, and I promise you that you are going to be taken care of.”
FROM CHAPTER NINE: “MY VALUE AS A MOTHER IS JUST BEING HERE” TINA SALOMON
I said something really terrible to Nathan the other day, and I was horrified when I said it, but, you know, I’m not perfect. He acts out a lot with kicking and punching and things like that, and this was right after I had come home from my surgery, and he was very focused on the fact that he could hit me and hurt me. So he decided that he needed to do that. I’m being sarcastic, but he does this all the time. I was putting on his shoes, and he started to kick me, and I kept telling him, “Don’t do that, you can hurt Mommy. This is not a hitting family. This is not a kicking family,” whatever. Then he did it again, and I got very upset and said, “Don’t do that! You could hurt Mommy very badly. You could kill me if you kicked me like that after I’ve had an operation!” I thought, “Oh, God, now I’ve done it. Now if I die its going to be on his conscience that he killed me.” Sometimes kids think that they can wish for things and that they really can happen.
Are there other parts of mothering that are difficult for you?
Recognizing that they are complete, separate human beings that have their own will. You can underline and capitalize that! [Laughing] And that I can’t make them do what I want and I can’t make them understand me, and sometimes it just drives me crazy. But I think mothering provides a nice distraction to having cancer. [Laughs] The intensity of mothering—all the tasks involved, keeping track of their schedules and washing the clothes and making breakfast and remembering who likes avocado this week and who doesn’t—that’s very consuming. Dealing with their emotional issues outside of cancer is very absorbing and can give me large blocks of time when I don’t think of myself as anything other than a “normal person.”
FROM CHAPTER ELEVEN: “CHRISTMAS IS EVERY DAY NOW” JANET JOHNSON
“I would like to leave my son with something he can remember me by. My mother, we don’t even have her voice. There’s not a day that goes by that I don’t think about her. If I could hear her voice now, it would make me feel pretty good.” Janet also says that it would do her good to talk to someone. And that, through this story, she hopes to help other women like herself “to better express themselves because a lot of women, I think especially black women, have a hard time expressing our feelings, such as fear.”
Janet has not had a mastectomy. By the time breast cancer was diagnosed two years earlier, when she was thirty-eight and Jordan fourteen, it had spread too far into her lymph nodes for surgery to be beneficial. A year later, cancer metastasized to her bones. Scans, blood tests, and chemotherapy have become a way of life. Still, she is determined to continue her full-time employment as a food-service worker in a local hospital, as much for psychological as economic reasons.
“A lot of people say, ‘Why are you still trying to work? Why aren’t you on disability?’ Well, because that’s what I got to do. I don’t feel like a disabled person. I’ve been on disability a couple of times when I felt there was a need but never longer than a month or so. Even with chemo, I’ve always felt pretty good. I didn’t want to make myself feel like I was sick. I felt like, as long as I was able to work and do, then I was okay. It made my son feel better, too, because when I was home, he would kind of worry about me. He used to tell me, ‘You know, if you could get up shopping, you can go to work.’”
“It’s been an experience, I tell you. It’s been an experience, trying to raise him, trying to do the right thing, trying to work and take care of him. When you’re trying to raise a child by yourself, you don’t want to be coming down hard as you’re already the mother, you’re the father, you’re the disciplinarian, the teacher, the nurse, the doctor. You’re all these things rolled up in one. It’s been kind of hard, but I don’t regret it at all. Not at all. I think he’s the best thing I ever did.
“I got to finish raising my son. And I’m going to finish raising him. So that’s what keeps me motivated and pushing on.”
FROM CHAPTER FOURTEEN: “A SOUL ON VACATION” LEONA REARDON
When I was diagnosed, I really did think, “I am going to die.” And I kept thinking, “Oh, boy, you mustn’t think that way because if you think that way, you will.” Eventually, I gave up on that. I finally came to, “Okay, if I don’t die and I do an ethical will or whatever, what’s the worst that can happen? I’ll have an ethical will—terrific. If I do die, I’ll be prepared, and I won’t have this anxiety to cope with on top of everything else.”
I started making the tapes with the idea that Gabriel and I would sit around at sixteen or seventeen, and he’d say how completely off the wall I was to raise these issues, and we would laugh about it. That thought helped me when I made them. Maybe it will help others, too.
Most people can’t do this alone, but they can do it. I say to people, “Okay, so if you don’t do this and you don’t die, no big deal. But if you don’t do this and you die . . . whew.” Everyone who can gets health insurance. They don’t not get health insurance because they might not get sick. It seems like the same thing. I mean, all this hysteria about Princess Diana, but the thing that I kept thinking was, Here’s a woman who has two small children and didn’t get to say goodbye. And I did. I can say with all honesty that I am not worried about my child. What an incredible gift, you know.
FROM CHAPTER EIGHTEEN: NEW STORIES OF MOTHERHOOD
Cancer pressed the mothers to an edge, where they had to reconsider their lives and their mothering. The stories they told themselves about cancer differed—it’s a gift, a curse, a wake-up call, a teacher, an incentive, a tragedy. There is no one-size-fits-all story to guide us through life or to help us face death. Yet, no matter the story told, almost every mother grew in consciousness and wisdom through her cancer experience—sometimes because of it, sometimes in spite of it, but always without acknowledgement and support from the larger culture.
Mothers do not raise children, become ill, or revise life stories in a vacuum. Every culture organizes the experiences of death and dying, childbearing and childrearing. It defines the “good death,” the “good life,” and the “good mother” and presses those aspirations upon women while simultaneously creating the less-than-ideal conditions in which they rear children.
Mothers living with cancer are simply mothers who have become sick. Like all mothers, they internalize the dominant culture’s ideals, with subcultures having a tempering effect. They then experience the disconnect between the romanticized expectations and the truth of their experience. Bumping up against the discrepancy without understanding the cultural context can lead to anything from vague discomfort to serious confusion, self-blame, and guilt.
Earlier, I made the point that sick mothers are caught between the prevailing motherhood myth and the taboos surrounding illness and death, having to carry our fearful projections about the dark side of life. Not only could the mothers not see their experiences mirrored in the culture, they also had to reshape their stories against a motherhood myth that recognizes neither women’s life-giving strengths nor their vulnerability and mortality.
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