Grief is an integral part of our human condition. All of us have lost or will lose someone we love beyond all telling. Our social nature makes us want to bond and become attached to others. “‘Tis better to have loved and lost, than never to have loved at all.” For how many centuries has this saying been a guiding insight into our human relationships? Grief is the price of those attachments of love that we make in our lives. How we deal with it has a lot to do with how we can put the loss into a broader perspective that allows us to continue to live despite the engulfing void in our lives.
Hearts heal faster from surgery than from loss.
-Ellen Goodman, Boston Globe, January 4, 1998
She died, and the person I was died, too.
-A widower of seventy, following his wife’s death
Life must go on; I forget just why.
-From “Lament” by Edna St. Vincent Millay
Remember me, when you can’t go on;
Think of me, when all hope is gone.
When you’re all alone and no one seems to care,
I will always be there.
For I am everywhere, and I have always been here;
Since time began, I am.
And I will never leave you, for I am your friend.
Just look inside your heart, take my hand.
-“Remember Me,” lyrics and music by JoAnna Burns-Miller, 1999
Grief demands expression of powerful emotions. We need an opportunity to tell and retell events, stories, and memories, all of these but reflections of our deep love for the person who has died. This is why it is so much harder when you have no one to talk with about how you are feeling. It’s also true that some people are more vulnerable than others in the throes of bereavement and have more trouble overcoming their grief.
This book, devoted to the human side of cancer, is at its heart about loss, the threatened or actual loss of health and life. But it also about surviving the loss of a beloved person who has died of cancer: spouse, parent, child, sibling, friend. “How do I go on after losing someone whom I loved so deeply and who mean so much in my life?” I hear this asked, sadly, all too many times. One in four families is touched by cancer each year. Indeed, cancer has become the leading cause of death in this country as heart disease mortality has diminished. This chapter describes the pain of grief and of the bereavement that follows the death of someone close.
Those who have experienced a significant loss and struggled to go on will recognize all too easily the feelings and emotions brought on by grief; I hope the discussion and suggestions for coping will be helpful. For those who have not yet been touched by loss, the chapter may not seem so relevant. But for readers who have a loved one who is ill and whose life is threatened by cancer, this chapter describes the feelings of grief, what is known about the human process of grieving, and offers some approaches that may help.
Grief before loss
Death from cancer is often preceded by a lengthy period in which both the person who is ill and the healthy caregiver recognize the likely fatal outcome, while at the same time trying to deny it. This period is sometimes called a time of anticipatory grieving. However, no matter how clear the outcome is, and how prepared one believes one is, the actual death somehow comes as a surprise: “I didn’t expect it so soon.” “I was still hoping for the best.” “I can’t believe it’s really happened.”
Grief after loss
The first hours and even days after death are often recalled later as: “I was in a daze; I can’t even remember it.” “I was so numb I had no feeling at all.” “I went through the funeral without even realizing what was happening.” “I felt so unreal, as if I was watching a movie.” “For days, my heart felt like a piece of stone.” This is a kind of benign temporary denial of the painful information as the psyche tries to absorb the catastrophic information.
But the numbness is interspersed, in this acute stage, with waves of intense grief, of crying and sobbing, that come on several times a day, occasioned by a sympathetic word, a hug of affection from a friend who understands, or seeing some object that suddenly brings back the gravity of the loss. Caught up in a wave of grief, you become distraught, crying without easy control, and overwhelmed for a period of minutes with trouble regaining emotional control. Sudden vivid memories come back, coupled with a sense of unreality, disbelief, and panic, swelling to an overwhelming feeling that “I just can’t go on.” These waves are so difficult to bear that you try hard to prevent them by avoiding contact with people. However, the act of sharing the loss with another, as painful as it is, is actually helpful because it encourages talking about the loved one and sharing memories, which makes the loss real and reduces the feeling of “maybe it isn’t so.” It also celebrated the life of your loved one.
A panicky, anxious feeling accompanies the sadness and helplessness and makes it hard, if not impossible, to carry out daily tasks. You may find yourself wandering aimlessly around a room picking up objects without thinking or pacing in agitation with the thought, “I can’t live like this.” You may avoid activities that brought you pleasure before, particularly those that remind you of your loved one. For example, you may not want to listen to music that was previously a shared source of enjoyment because it makes you feel sadder. These feelings are all intensified during the waves of overwhelming grief described above.
Along with psychological distress, grief disrupts normal physical function. The abrupt change in your pattern of living-caused by the absence of a key person in your life-disrupts the brain and biological rhythms (the body’s normal twenty-four-hour rhythm of function), especially of the nervous, hormonal, immune, and cardiovascular systems. These physiological changes lead to the common physical symptoms of grief. For example, it may be impossible for you to concentrate, to keep your attention on any topic. Sighing respirations are common, and choking sensations occur often with crying. You may feel weak and profoundly fatigued. Sleep may be difficult, ranging from fitful to impossible. Food has little taste;it “sticks” in your throat. Weight loss is common, and you may look pale and ill, in addition to looking profoundly sad. Strikingly, many of these physical consequences seen in human beings are similar to reactions observed in animals. For example, Dr. Myron Hofer, a psychiatrist and researcher, has witnessed similar effects in infant mice when their mother is taken away from them.
During this stage of acute disorganization, you may feel distant from others and want to be alone. Yet you must go through the cultural rituals that follow a death: the wake, sitting shivah, the funeral, and the burial or cremation. These rituals around death developed over the centuries for a good reason: They encounter the tendency to isolate oneself. They ensure that you are surrounded by others who care and who share the loss. For several days, you may rarely be left alone by family and friends, who wish to give you comfort with sympathetic words and gestures.
This complex picture usually persists for about six weeks. Dr. Erich Lindemann, chairman of Psychiatric at Massachusetts General Hospital in the 1950s and with whom I studied, carried out the first study of normal grief. In 1941, a tragic fire in the Coconut Grove nightclub in Boston trapped about five hundred young people inside. Most died or were badly burned. As the staff of local hospitals attempted to give medical care and comfort to survivors and families, Lindemann documented the survivor’s symptoms, their grieving, and its outcome. He found that after six weeks, the aimless, disorganized days and nights with preoccupying thoughts of the deceased, including hearing them speak or seeing them in a fleeting dream or dreamlike state, began to diminish. A normal pattern of daily activity began to ensue. However, there was a wide variation in timing, in severity of symptoms, and in recovery.
This study was followed by those of many other outstanding researchers, who told us that we have held a lot of myths about grief that just aren’t true:
- Myth: Grief should be over in a year.
Fact: Grief lasts much longer than a year for many people.
- Myth: Grief goes through stages to final acceptance.
Fact: There are no stages of grief and, often, no acceptance of the loss.
- Myth: Life should go back to normal.
Fact: There is no “recovering” what is gone for many, but simply carrying on with a radically altered experience of life.
We know that when grief befalls a parent after the death of a child, or a spouse after the loss of a mate of many years, particularly after a long illness, there is apt to be prolonged grieving, and the loss is never fully over. Unquestionably, the death of a child is viewed as the most painful loss: “I’ve not only lost my child, but my future.” For many people, the loss of one’s mate or partner is equally traumatic. And then there are the losses made all the harder by a long-standing pattern of interdependence, such as sometimes exists between parent and adult child, and between siblings.
I saw Mary after her husband of forty-nine years died of prostate cancer. They had a very close relationship and had woven a pattern of shared responsibilities typical of fifty years ago. She took care of the home and had raised the children, and he was the breadwinner and keeper of their finances. She participated little in these areas because it didn’t seem important. During his illness, Bill tried to tell Mary about their financial affairs and to show her what she would have to do when the time came for her to take over these matters. She refused to listen. In the final months of his illness, Mary took total care of Bill, and this took all of her time. She gave up seeing her friends, and her only social contacts were telephone calls and visits from the children and grandchildren.
Mary found Bill’s death hard to believe at first. She went through the religious services without showing great emotion and accepting comfort from others. The reality of the loss did not hit her until her friends and children left, and she was finally at home alone. She became preoccupied with thoughts about Bill’s illness and worried that she hadn’t done enough. She ate poorly, did not want to cook, and lost weight. She cried all the time. Her family became concerned about a possible suicide risk when she told her daughter, “I really don’t want to live. I’d rather join him in the cemetery now.” At her daughter’s insistence, Mary agreed to accept help.
Sessions over six weeks were devoted to her going over and over the events of Bill’s illness and death, and her concerns about the last moments: “Maybe, if I had called the doctor a day earlier, he might have lived a while longer.” She felt guilty that she hadn’t done enough. It was difficult for her to let go of these feelings and recall the happy memories of Bill and their long life together. When she talked about her concerns with her children, they tried to help by saying, “Stop talking about it. It’s only making you feel worse.” The effect of their response was to isolate her even more.
As we continued to discuss her loss, Mary was able to eat and sleep better and to socialize some. One year after Bill died, she was functioning better and had found an accountant to manage her affairs. However, she was still grieving and living much of the time preoccupied with memories of her life with Bill. Special family parties were so painful that she wanted to avoid them: however, for the sake of the children, who very much wanted their mother to be with them, she forced herself to go. She did take up the game of bridge again, and reconnected with her old friends. She attended a group for widows who shared their similar feelings. A year and a half after Bill’s death, Mary realized that life would never be the same, but at least now she could continue to live.
Grief following an unexpected death
While cancer is a disease in which people often have time to prepare for a loss and to say good-bye, that isn’t always the case. Sometimes there is no time for either the person who is ill or the loved ones to absorb what is taking place in a whirlwind of overwhelming medical problems and failed treatments.
Hans was a diplomat in his seventies, happily married to a woman twenty years his junior. He had carefully planned how his wife would manage when he died first. Neither he nor his wife was prepared for her diagnosis of acute leukemia, which did not respond at all to treatment. They both struggled with the reality, but the time was too short to grasp fully the true nature of her fatal decline before her untimely death a month later.
Hans was devastated and required help from friends to organize her funeral and burial back in Germany. On his return to the United States, he still could not believe his wife had died. “I imagine she is away on a trip.” His grief was acute, and he cried and paced aimlessly for days. Unable to go out with friends, he stayed home and went over and over the monthlong illness and what else might have been done. He tortured himself for not seeking an experimental therapy in Boston. Friends encouraged him to come to see me.
We talked at length about the enormity of his loss. He had had a clinical depression twenty years earlier, and after three months, we agreed he might benefit from medication.
He also agreed, reluctantly, to join Dr. Sherry Schachter’s grief support group for people who have lost a loved one to cancer. In the group, he was able to talk more easily with people who understood his loss. Over the next two years his outlook improved.
Grieving over years
The American way . . . has turned grieving into a set process with rules, stages, and of course, deadlines. We have, in essence, tried to make a science of grief, to tuck messy emotions under neat clinical tables—like “survivor guilt” or “detachment”
So whatever our national passion for emotional efficiency, for quality-time parents and one-minute managers, there are simply no one-minute mourners.
-Ellen Goodman, Boston Globe, January 4, 1998
The myth exists in our culture that there is an acceptable time period to be set aside for grieving, usually one year. But this ignores the reality of human nature. Each person is unique: each loss is unique. The expectation of a “deadline” beyond which you no longer grieve is just plain wrong and add to your burden. This amounts to blaming the person who is grieving for his or her suffering, rather than trying to understand it-another form of “blaming the victim.”
Parents know full well that they will never “get over” the death of their child. They hold the memories far too dear to let go. Life does go on for them, but in an entirely different way. I was honored to speak at a meeting of the organization In Loving Memory, which is dedicated to providing comfort and support for parents who have lost their only child or all their children. Over two hundred people gathered for this remarkable meeting in Vienna, Virginia, and shared memories of their children with others who knew exactly how they felt. Each wore pictures of their children, shared memories, and listened to discussions of the many faces of grief. It felt like a celebration of their children’s lives, in a setting that made this possible. Many parents are still grieving years later, and some never fully recover or “put the past behind them.”
In 1998, I took part in a TV segment on 20/20 about grief. The personal story about Rob, a young man whose father had died of cancer ten years earlier when he was a teenager, touched me.
Rob and his family were interviewed on the day of his graduation from medical school. The day itself was bittersweet because it would have meant so much to his father, and the celebration was clouded by his absence. Rob tells of how earlier feelings of loss returned, for him and his family, on that graduation day, although it was a full decade later. He said that, for him, grieving was the only way of holding on to his father. Painful, yes, but also evidence that the tie was unbroken and that his father still was in there hearts.
There are similarities between the myth that there are stages in grieving (from denial to acceptance) and the notion that patients pass through psychological stages in their experience of a cancer illness. All the stages may occur during grief, but not in a set sequence and surely not in a way that leads us truly to accept the death of someone who was an intimate part of our life.
Dimensions of grief
How we grieve, like how we confront a serious illness, is influenced by the attitudes of the society at large, as well as those of our own personal traditions. We see over and over at Memorial that people from certain ethnic groups are apt to be more demonstrative in their grief. The other extreme is the “stiff upper lip” that is expected in some cultures un which it is considered a sign of weakness to cry or show emotions in public, no matter how distraught one is. These attitudes and expectations can cause us to suffer in silence. We can feel like we’re “doing it all wrong,” when in fact there is no right way.
Social attitudes often differ among families regarding talking about death with young people. Children and teenagers have many questions, like “Where do people go when they die?” Some families answer the question by saying, “Grandma is in heaven” or “with God” or “alive in your heart and memory and feelings.” It is often best to speak to children about death as straightforwardly as you can, within the context of your own beliefs and traditions, to help them to go on.
Several emotions that accompany grieving are important because they can come as a surprise. If you are prepared for them to arise, they may be easier to deal with.
A major part of grief in its early stages is an obsession with the last days of the illness and “why” it happened, as illustrated earlier by the experience of Mary. Thoughts go around and around as you look for ways things might have been different, might not have ended in death. “What else could I have done?” “Did I make a mistake?” “Why did I go home that last night and not stay at the hospital?” “Did the doctor make a mistake?”
Vivid memories of the last days come back repeatedly, such as how your loved one looked, so pale and ill, sometimes in pain. People say, “Why can’t I just remember the good days and forget the last horrible ones? But I can’t get beyond how she looked that last week.” This preoccupation with wanting to clarify the details of the illness and the causes of death often is connected with the feelings of self-blame and guilt, that somehow you could have done better or even have saved the person you mourn.
The present method of delivering health care contributes to this dilemma in a new way. When a person becomes critically ill, it often becomes important to know whether or not the patient wants to be resuscitated in the event breathing or the heart stops. In the absence of an advance directive in which the ill person has indicated his or her wishes in this regard, the next of kin or health proxy-usually a spouse or partner, a parent, an adult child, or a sibling-must be asked whether the patient is to be resuscitated. The decision to resuscitate may lead to the patient’s being placed on a respirator with continued discomfort and pain; this decision may prolong dying.
Sometimes, saying no (Do Not Resuscitate
Jordan, a thirty-year-old husband and parent, signed the DNR order for his father, who had advanced colon cancer. Ten years later, he said: “I know it was what my father would have wanted, but it’s still the hardest thing I’ve ever done.”
Guilt also appears during grieving, for having survived-for being alive when the person you loved so much has died. I recall a mother who could not allow herself to smile or laugh because her son couldn’t do that anymore, and she felt it would be wrong if she did. It took months for her to feel it was all right to laugh and take pleasure in life again.
Another common feeling is one of relief that the person, after a long illness, is past his or her suffering. “At least, he is now at peace.” This feeling is accompanied by a new found sense of relief for yourself now that you no longer have to watch the suffering, witness the daily painful ordeal. This sense of relief is strengthened for many by spiritual or religious beliefs. Most of us find this feeling completely rational and understandable. However, the sense of relief makes some people feel guilty, even though it is a reflection of reality.
The other side of the guilt coin is anger. “If it wasn’t my fault he died, then it had to be somebody else’s!” Anger often turns to the doctor, nurse, or hospital; all become suspect, especially if the relationship at the end was not positive and trusting. Asking for an appointment with the doctor after the patient’s death, to discuss the final events and the cause of death or to review the autopsy findings, can lay some of the worrisome questions to rest.
Usually, however, the anger is really about the absence of the person you loved; the person is no longer sharing your life. You know that he or she didn’t want to have cancer, but in an irrational way you feel angry with the person for leaving you. This anger may be acted out by being irritable with others as they try to help.
Anxiety and helplessness
The immediate feeling is “I can’t deal with this; I can’t make it alone.” “I have never felt so alone and vulnerable before.” You have a deep sense of uncertainty about how you will be able to tolerate the future on your own. Naturally, the death of someone extremely close to you prompts you to have thoughts about your own mortality. Thoughts of death, usually carefully tucked away, surface when someone close to us dies. We get a sudden stark look at our own mortality. This is especially true with the loss of both parents. As long as they are alive, we sense that “I’m okay because my parents will die before me.” But when that protection is gone, our own vulnerability to death becomes much more real.
Why did it happen?
This question gets asked over and over, particularly when the death is that of a child whose life was just beginning. We try hard to make sense out of it, but it just doesn’t work. We believe in fairness and justice, but this event represents neither. We view ourselves as being moral, “good” people; why, therefore, should it happen to us? One of the most widely read books about this aspect of grief is by Rabbi Harold Kushner, When Bad Things Happen to Good People. Kushner’s son died as a teenager of a rare progressive disease. He expresses this feeling of unfairness and chooses to honor Aaron’s life by seeking to distill a blessing out of his pain and tears, in the hope that the book will help others who experience such an enormous loss:
I felt a deep, aching sense of unfairness. It didn’t make sense. I had been a good person. I tried to do what was right in the sight of God. . . . How could this be happening to my family? If God existed, if he was minimally fair, let alone loving and forgiving, how could He do this to me? . . .
I wanted to write a book that could be given to a person who has been hurt by life—–by death, illness or injury, by rejection and disappointment—–and who knows in his heart that if there is justice in the world, he deserves better. . . .If you want to believe in God’s goodness and fairness, but find it hard because of the things that have happened to you and to people you care about, and, if this book helps you do that, then I will have succeeded in distilling some blessing out of Aaron’s pain and tears. . . .His life made it possible and . . . his death made it necessary.
Feelings of despair at the injustice and unfairness of the death of the person you love are often coupled with difficulty in sustaining personal faith in a God who can be viewed as loving. Yet that faith and firm belief are of great value to the many who believe. This was poignantly expressed in an inscription found on a retaining wall of a building in a concentration camp liberated by Allied forces in World War II:
I believe in the sun, even when it doesn’t shine.
I believe in love, even when I don’t feel it.
I believe in God, even when He is silent.
Trying to make sense of it
Dr. Susan Folkman, a psychologist, has studied individual’s search for meaning as a way of coping with the death of someone close. Folkman points out that when we have to face something like the loss of a cherished person, we first try to approach it as we ordinarily do, namely, to see it as a problem and solve it. But when we confront this particular problem , there is no solution, no way to “fix it.” We try going over the feeling of loss again and again, only to return to the same dilemma: You can’t fix it. It’s like banging your head against the same wall over and over again, and nothing happens except you get a bloody head. John Bowlby, another early researcher in grief, described this repeated searching for the lost one, which is followed by despair when the person isn’t found.
When the psyche can’t change something, it resorts to trying to figure out how to view the loss in a tolerable context, to “make some sense of it.” Being able to view the loss from a religious or spiritual perspective is helpful for those with strongly held beliefs. This may mean feeling close to the person who has died, by a feeling of a spiritual presence, and by a hope to be reunited in a future life. Searching for a transcendent meaning beyond the bounds of physical life provides a strong support during grieving. According to Folkman, we seek a larger, “global meaning.” We must place loss into some larger perspective that is tolerable and that changes its meaning. “He must have died for some purpose.” “It fits some plan that we don’t understand.” “It’s God’s will.” This serves as a way to give an acceptable meaning to a senseless loss. Dr. John Spinetta, a psychologist, found that parents who had lost a child to cancer were helped when they could give some meaning to their loss.
I have discussed the normal grieving process and how myths about it lead to inappropriate expectations. Sometimes, however, grieving is complicated by factors that make it much harder, some of which are outlined below. Most people with these issues can benefit from professional evaluation and treatment.
Effects of childhood experiences
Our view of the world and the goals, values, and expectations we adopt for ourselves have a lot to do with childhood experiences. If the world we grew up in was largely benevolent, with only the reasonable and expected troubles of childhood, we are more likely to be optimistic as adults, expecting good things from the world. On the other hand, when childhood has not been characterized by benevolence, when there has been physical or psychological abuse, we are, as adults, less trusting of the world, more pessimistic, and more suspicious of the motives of others. Many people manage to overcome these problems and, as adults, appear secure and well adjusted. However, when a person has had earlier, traumatic experiences, the loss of someone close can lead to an intense recall of the traumatic events from long ago, which compound grief with symptoms of posttraumatic stress. Grief is complicated by increased anxiety, fears, and helplessness. These individuals are vulnerable to additional problems during grieving.
Jorge was a man who sat by his young wife’s bedside throughout her long course of ovarian cancer. When she died, he was devastated and found that he could not bear to go on, even though he was aware that their children needed him. He was overcome with grief, and he had anxiety and frightening nightmares along with his profound sadness. When we talked, it was clear that Jorge had had a remarkably good marriage after he came to the United States as a young man. He had put his childhood in Puerto Rico behind him, never talking about it to anyone. It was as if his life began with his marriage. As we talked, Jorge described a childhood of physical abuse leading to his running away and coming to New York. The grief over the loss of his wife led to his inability to keep the buried traumas from the past out of his consciousness. Jorge could not prevent the memories from coming back in nightmares. He felt “weird,” helpless, and confused that this was happening as he mourned his wife. “Am I crazy?” he asked. We met several times, and he began to take an antianxiety medication. He was able to connect his past with the present and to motivate himself to care for his teenage children, whom he wanted to protect from what he had experienced. Jorge talked through his enormous loss, how his life had been totally changed by his wife’s presence and how hard it was for him to go on.
Prolonged grief leading to depression
At times, the symptoms of acute grief remain so severe that they simply don’t improve at all. The lack of enjoyment of things that brought you pleasure in the past, along with sadness, isolation, and crying, begin to resemble the symptoms of clinical depression. Certainly, symptoms of depression and grieving overlap, and it is not always easy to tell them apart. Professional evaluation is needed to determine when severe grieving, that is, prolonged or unresolved grief, has become a clinical depression.
The idea that “we all have a breaking point” is surely apparent when people have a double loss, such as losing a spouse and a child in close proximity. This double tragedy is catastrophic, taxing the powers of making sense of it and adapting to a totally altered life. If the spouse was a breadwinner, the grieving person may also experience financial losses and the need to live with diminished resources. Depression following multiple losses is a common occurrence.
Phobias and fears
When a child dies in the family, the siblings have memories of the loss, but they also experience the parents’ grief and fears for their safety. Parents may become overprotective, afraid of every minor symptom that occurs in their healthy children. The result can be to sensitize the child about vulnerability to illness. We sometimes see this reaction in adults who have excessive fears and phobias of illness, appearing to stem from their parents’ response to the death of a child and their fears about illness of their remaining children.
Earlier psychological problems
If you have experienced significant psychological problems in the past, you are vulnerable to more severe grief. If you had a problem with alcohol or drugs in the past, you should be alert to avoid using them as a crutch. If you have been seriously depressed, you are vulnerable to the return of depression. Recognizing your vulnerability is important so that you seek help early.
Complicated feelings toward the person who died
At times, death comes to a person who had caused pain and anger to others. A son or daughter might never have resolved feelings toward a difficult father. A surviving spouse may have had a marital life that was a mix between affection and hostility. On the surface, it would appear that these circumstances should make grieving easier since there was less attachment. But it doesn’t work that way. Grief that is colored by mixed emotions is more difficult. It is hard, when someone is gone, to admit to the negative feelings and harder yet to express them without feeling guilty. Counseling may be needed to sort out the mix of feelings accompanying this grief.
Positive effects of grief
Grief can foster maturation. Sometimes, the death of someone dear leads the survivor to find new inner strength not obvious before.
I recall a forty-year-old woman who had remained single and allowed her mother to make all her decisions throughout her life. They spoke daily, and the woman’s grief following her mother’s death was severe. After several months of exploring the loss in counseling sessions, and recognizing her need to depend on others, she began to rely more on herself and to become more confident of her own abilities. She continued to miss her mother, but as she adapted to the loss, she developed a stronger sense of herself and her potential as an independent and capable person.
Altruism can develop as a response to grief. Losing someone dear can lead to feelings of “I want to do something to honor his memory so people won’t forget him.” If the loss is a child, the feelings may be “I want to make sure no other child has to go through the illness my daughter did.”
Finding a fitting memorial is a way of responding to grief. Gifts in memory of an individual who has died often go to an organization doing research on the disease that resulted in the person’s death, such as the American Lung Association, the American Heart Association, and the American Cancer Society. Many foundations devoted to research in a particular disease come about because of grieving individuals who establish them in memory of the loved ones who died of cancer or AIDS, for example. The TJ Martell Foundation in New York, focusing on cancer, leukemia, and AIDS, was established by Tony and Vicky Martell, a father and mother who lost their twenty one year old son, TJ, to leukemia. The foundation began as a way for these parents to honor their son and carry out his wishes that they help fight his disease by supporting research. The foundation has generously supported our work in exploring the human side of cancer.
Many of the volunteers at cancer centers or in hospices have lost someone precious; these survivors serve as volunteers because they “want to give back,” to make it easier for someone else. Often they become volunteers in the very facility where the person died, so that they maintain a close relationship to the staff and a feeling of helping in a place where they understand the need.
Management of normal grief
Studies of people going through grief show that the majority, about 80 percent, get through it with the help of their families, friends, and clergy. But 20 percent need some extra help, either one on one counseling or group support. Organizations spring up to meet the needs of specific groups. The Widow to Widow Program has been highly effective. Compassionate Friends has given help to many people who have lost their child. In Loving Memory, helps parents who have lost their only child or all their children. Programs have also been started for children who have lost a parent to cancer or AIDS.
What helps get through it? First, it is important to talk about it. The first thing grief counseling does is to encourage you to go over the details of the last days of illness, to talk about the sadness and the loss. People go over these details many times as they struggle to come to terms with what has happened to them. Talking with a sensitive listener is clearly helpful. This notion isn’t exactly new. Shakespeare’s Macbeth said, “Give Sorrow words, the grief that does not speak knits up the o’erwrought heart and bids it break.”
Second, along with talking, it is important to express your emotions, such as sadness and loneliness. Crying and sobbing are okay; it’s helpful to experience these feelings. People are embarrassed by crying in front of others and may work hard to keep their tears in check. Counseling allows and encourages this expression, which is part of the grief work, as you recall meaningful memories of places and times. Counseling can help you deal with the loss and to make sense of it in a way that enables you to go on.
Third, counseling, either individual or in a group, should be pursued if symptoms are severe or persistent. Many other resources exist nowadays to provide comfort: books, tapes, music, lectures. Most recently, the Internet has emerged as an unexpected resource, especially for people who are shy about talking face-to-face about their loss. Because the Internet has many people describing a range of experience of loss, it is easier to find someone who truly “knows what you’ve been through.” Remaining anonymous is a big plus for some.
Children and adolescents who lose a a parent often have trouble expressing their pain both to peers and to adults. They are anxious and depressed and frequently develop behavioral problems. Programs exist in many centers to help children and the healthy parent both before and after death. A program at Memorial called Kids’ Express is run by social workers to help children cope with the loss of a parent. A similar one at a New York Hospital, called Kids’ Net, is for children who have a parent with AIDS. These programs help to identify vulnerable children and parents. Several studies show that children whose surviving parent remains seriously depressed have more trouble. The support and care that the family receives after the loss is critically important in terms of adjustment in later life.
How grief affects physical health
Grief causes a profound disruption of biological rhythms. The hormonal and immune systems are affected, as evidenced by loss of sleep, appetite reduction, and weakness. Studies show a higher risk of death from suicide, accidents, cardiovascular disease, and some infectious diseases in survivors, especially men. However, studies show that women who have experienced a loss maintain a more healthy lifestyle than men who are left alone. This suggests that men should be more alert to their lifestyle and health concerns.
An important question often asked is whether grief increases risk of cancer or causes existing cancers to recur or progress.
I served on a panel appointed by the Institute of Medicine that carried out a major review of grief. We were surprised to find that the effects on mortality and vulnerability to disease were not as great as we had assumed. They appeared not to be of a magnitude to affect development of or recurrence of cancer. In a multicenter cancer clinical trials group (Cancer & Leukemia Group B), my colleagues and I confirmed these conclusions.
While many people handle grief well on their own, some have more difficulty in this struggle. Most people will benefit from using one or more of the sources of support that are available. The good news is that the majority of people who grieve recover to go on with their lives; they may be altered and radically changed, but they do find a way to continue to face the future. And let’s remember not to apply any time frame or outside expectations for this to happen; grief is a unique experience for each human being.
Our last thought as we leave you is that there are as many ways of grieving as there are ways of loving. The two are inextricably linked. Hold dear each of these many ways.