» auteur: Carole Neal

It’s 8:00 a.m. in the central design office at Rifton, a New York firm that manufactures equipment for the disabled, and Carole Neal is at her computer, reviewing assembly documentation and revising drawings of parts for new products. Above the desk is a large painting of a beach, and a colorful sign: "Carpe diem!" For her the slogan (Latin for "seize the day") has special meaning: she often wonders how many more she’ll have. Three years ago, this mother of three was diagnosed with breast cancer. A first round of chemotherapy resulted in remission, but now the cancer has returned—with a vengeance.

Plough: What was your first reaction on learning that you had this thing?

Carole: I guess from the very beginning, before anything, I was just terrified, because I have always been terribly afraid of death. But that only lasted a few minutes after I heard the diagnosis. In fact, I felt somehow relieved—I don’t know why. Maybe it’s because I had always been afraid of dying, and all of a sudden there it was—cancer—and I didn’t have to worry about it anymore.

Sure, I’ve gone to pieces over it since then. After the first bout of chemo, I was sitting there and I felt this lump under my arm, and I just fell apart. I guess I still hadn’t really faced the possibility of terminal cancer, not at that point anyway …

This is going to sound really dumb, but it’s the truth: I’ve been almost frantically afraid of cancer all my life, but then when it came, right there, square in my face, I wasn’t afraid anymore. I don’t like to use the word "gift" because it’s overused, but that really was a gift. My husband, Dale, and I looked at each other, and we said, "Here it is. Now we’re in God’s hands." Of course, we’re in his hands the whole time. Where else—what better place—could we be?

Dale even joked about it when we found out that I had cancer; he said it would be a terrible shame if I died of something else, since I had worried so much about cancer all my life.

Plough: How has your attitude toward time changed? Has it changed?

Carole: Well, you saw that "carpe diem" thing above my desk. I guess it sort of expresses what I’ve been feeling more each day.

You know, we spend a lot of our time dealing with petty problems and thinking petty thoughts, and I’ve come to see that that just has to go. There’s anger, envy, every kind of emotion you have in a relationship with anybody. People hurt each other, and get hurt over little things. I’ve come to see that it’s stupid—just plain stupid—to waste time on those things.

With cancer you begin to realize that you have to make use of every day; each minute becomes precious. Dale and I have talked about how we’ve probably wasted years of our lives carrying little grudges and things that we couldn’t work out, or struggling to find enough humility to confront a problem, or apologize, or whatever.

The present moment—the time we have right now—is the same for you as it is for me or for anyone. It’s all we have. We tend to think, "I’ll do that tomorrow;" or "I’ll wait till I have time to follow through on that …" But we actually don’t have tomorrow. None of us does. We only have today and we only have each other—the person next to us, the person we live with or work with. Seeing this has been a tremendous challenge to me.

Each of us has a life to live—and once we’ve found it, we ought to live for it. We need to be ready to give up everything—our plans, absolutely everything, in order to go after what we’ve found. I’m not saying we all have to be intense or energetic. It’s not a personality thing. But to really live demands all our fire…

Plough: Where do you draw the line between accepting the fact that you have cancer, and fighting it off?

Carole: Well, obviously you don’t just lie down once you know you’ve got cancer. You don’t just fold up and crash. You fight to keep living with everything you have. That’s why I thought chemotherapy was the answer at first, because I felt I was really fighting the disease with everything I had. I was going to take the most explosive kind, you know—whatever it took.

Then I found out it was a hopeless cancer; that people just didn’t survive it. I think they told me the survival rate was basically nil, 1 to 99. But I hadn’t asked, and I didn’t care. I already knew from my sisters’ death [of the same cancer] that the statistics were pretty bleak. That’s when I said, "Forget the numbers. I’m not going to spend the rest of my life in bed, sick and vomiting and everything else. I’m going to live with everything I’ve got."

Plough: So it’s more about living with cancer, than dying of it?

Carole: Yes. That’s exactly where it’s at. And I think that’s why I just can’t handle these sweet songs that are sometimes sung around the dying or seriously ill. I’m not saying I prefer silly, superficial stuff, but I do love Mary Poppins, piano music from the 1940s, Ray Charles, black Gospel music …

I’ll be honest: when "the time comes," I hope no one starts singing those hymns about floating around in heaven. I’d think I was already descending into my grave. You know, the words of those songs may be deep, but for some reason, hearing them sung reminds me of all the most depressing things in life. I know it shouldn’t be that way, but it is … I need energy, strength for the fight. The fight for life. And I can get that straight from the Gospels.

Dale and I start each day by reading the Gospels; we’ve read them over and over and over during the past few years, and Jesus—this most radical, revolutionary lover of life—absolutely blows my mind every time I read his words. He pulls me to where I want to be, in life or in death. He had this unheard-of compassion for the weak and sinful, yet he shouted at the strong and powerful (though he loved them as well), and he had a deep reverence for God, his father, our father. But he wasn’t pious. I’ll bet he had a whale of a time in everything he did.

Now, you’re going to think this is weird, but to me the battle has been like an adventure, the adventure of my life: the necessity of fighting something that is absolutely deadly. I felt from the beginning that I wasn’t going to let any part of this disease take me over. And I didn’t want to hear about suffering; I didn’t want to know about dying; I didn’t want to read about heaven and angels and all that kind of thing.

Again, in reading through the Gospels, I feel I’ve gotten a really good picture of Jesus. To me, that is where life is. Jesus fought everything, and did and said just what he felt, straight out. He loved everyone without reservation: the rich and the poor, everyone. And at the same time he tackled people so vigorously when they sinned—with compassion, but incredible straightforwardness. Not that I could ever do that. But that’s how I’ve wanted to live my life, with that kind of fervor.

Plough: Have you thought much about the actual day of your death?

Carole: Yeah, I guess so. It’s really the thing that scares me the most. It depresses the heck out of me to think of everybody standing around singing and looking all morbid or something. I don’t know; I guess every death is different. I hope there’s lots of basketball on the court outside my window when I go, and some hefty music coming up from Ruben’s corner downstairs. Thank heaven we’re all different, and I hope we can allow each other to experience death in different ways, just like we all look at life in different ways, and run with that.

Now, about the day I die: each one of us has to die. I guess it seems more significant, more pointed when somebody is dying at a younger age than you’d think they should, but it’s part of life. So I die today; somebody else dies thirty years down the road.

I guess I’ve been hit more and more by the fact that each day is all I have. I can remember yesterday, but I can’t relive yesterday, and I have no idea what tomorrow will bring. All I have is just right now.

Yesterday I didn’t think I was going to live another day, and the doctors and my family didn’t think so either. Today I don’t feel that close to death. But that’s what is so exciting, because it forces you to live in the right-now, in the present. It might seem crazy that I’m still coming here to the office every morning, but you have no idea how much it means to me. At work I run into all the people I love. I don’t want to be at home staring at four walls—I want to be around people, joking and laughing and sometimes crying too. I definitely couldn’t stand being alone in bed.

You know, ever since I was a child I’ve felt that hell—if you can define it—is separation, isolation. Being cut off, being alone. Not feeling connected with others. But it’s odd: just during the times when I’ve felt most alone, I’ve sensed the power and strength of the community as it prays for those who are sick or weak or struggling, and I’ve felt carried by those prayers and that love.

Plough: What advice would you have for the family of a dying person, or for caregivers? You don’t want to be alone, or in a hospital, but you also don’t want to be surrounded by mourners.

Carole: I don’t have any advice for anybody. I only know what I wish for myself. And I’m leery of any emphasis on the hereafter, on some other world that we really don’t know anything about. Even if you read and read and read, you still won’t really know anything about it. The best way to face death, I think, is to live. I guess I do ask God each day what he would have me do today, and I try to do it. But you know, you can get so enthralled in a prayer, and then the next minute you’ll go out and have a heated argument with someone. It’s terrible! So I say, forget the holy prayers. Of course, I do hope to follow God’s will in my life. I do wish for it.

I don’t know how to say it … eternity sometimes seems very close. Yesterday I was really discouraged—I’ve hardly ever had a day like that. I was thinking how much I’d miss Dale and the children, and wondering what it would be like to be separated form them. Then Dale said that the closest we’ll ever be is when we’re all together in eternity. That brought me so much peace and so much joy, when I thought about it, that I could just like back, and I asked God, "Please take me now," because I had had such a wonderful, happy thought.

Plough: But he didn’t. And today you’re at work.

Carole: Yeah, shucks, I thought I was going to go yesterday! I could hardly lift my head, and I was getting down, but then I said to myself, "I’m not going to give into this. I want to be with the people I love." So that’s what I did today. I got up at six and took a shower, and invited a child from the neighbors over to breakfast. It’s wonderful to be able to live just as if you’re going to keep going. I guess that’s the advice I’d give anybody: to go on a long as you can, in whatever way you can.

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Carole Neal was a member of the Bruderhof - an international communal movement dedicated to a life of simplicity, service, sharing, and nonviolence. (http://www.bruderhof.com/).