by Alan D. Wolfelt, Ph.D.
You have learned that you are dying. Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, you know you are dying, yet it is your nature to want to live. The thoughts in this article are intended to help you deal with this tension and to continue to live even though you are dying.
Acknowledging you are dying is the first step to living the rest of your life. If the onset of your illness was sudden or unexpected, you will likely feel shock and numbness at first. This is a natural and necessary response to painful news.
You can only cope with this new reality in doses. You will first come to understand it in your head, and only over time will you come to understand it with your heart.
To acknowledge you are dying is to let go of the future. It is to live only in the present. There is no easy way to do this, and you will probably struggle with this task every day until you die. Know that if you work at acknowledging the reality of your coming death, however, instead of denying it, you will open your heart and mind to the possibility of a new, rich way of living.
Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears and hopes. Illness establishes new directions and often causes some questioning of old directions. New thoughts, feelings and action patterns will emerge. The unknown invites you to question and search for the meaning of your life, in the past, present and future.
Each person responds to news of terminal illness in his or her unique way. You, too, will have your own response, be it fear, excitement, anger, loss, grief, denial, hope or any combination of emotions. Becoming aware of how you respond right now is to discover how you will live with your terminal illness. Don’t let others prescribe how you feel; find people who encourage you to teach them how you feel. After all, there is no right or wrong way for you to think and feel.
You may find that you don’t want to talk about your illness at all. Or you may find that you want to talk about it with some people, but not with others. In general, open and honest communication is a good idea. When you make your thoughts and feelings known, you are more likely to receive the kind of care and companionship you feel will be most helpful to you.
But if you don’t want to talk about your illness, don’t force yourself. Perhaps you will be able to open up more later on, after you have lived with the reality of your illness for a time.
Your family and closest friends deserve to know that you are dying. Tell them when you feel able to. If you simply cannot bring yourself to tell them, find a compassionate person with whom you can entrust this important task.
Be aware that everyone will react differently to your news, just as each terminally ill person reacts differently to his or her own illness. Many will be shocked. Many will cry. Some will refuse to believe it. Some will spring into helpful action by running errands for you, offering to clean your house, etc.
Many will not know how to respond. Because they don’t know what to say or do, or because your illness may arouse their own fears of mortality, they may even avoid you altogether. Know that their apparent abandonment does not mean they don’t love you.
Even children deserve to be told. As with all people, children can cope with what they know. They cannot cope with what they don’t know. Be honest with them as you explain the situation in language they will understand.Â Don’t overexplain, but do answer any questions they may have.
Many people are taught as ‘patients’ to be passive recipients of the care provided by medical experts. But don’t forget-this is your body, your life. Don’t fail to ask questions that are important to your emotional and physical well-being out of fear that you will be ‘taking up someone’s time.’
Learn about your illness. Visit your local library and consult the medical reference books. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. Ask your doctor, nurses and other caregivers whenever you have a question.
If you educate yourself about the illness and its probable course, you will better understand what is happening to you. You will be better equipped to advocate for personalized, compassionate care. You may not be in control of your illness, but you can and should be in control of your care.
Your illness will almost surely leave you feeling fatigued. Your ability to think clearly and make decisions may be impaired. And your low energy level may naturally slow you down. Respect what your body and mind are telling you. Nurture yourself. Get enough rest. Eat balanced meals. Lighten your schedule as much as possible.
Knowing you will die offers you a special privilege: the privilege to say goodbye to those you love. When you feel you are ready, consider how you will say goodbye. You might set aside a time to talk to each person individually. Or, if you are physically up for it, you might have a gathering for friends and family. Other ways of saying goodbye include writing letters, creating videotapes and passing along keepsakes.
Whatever their forms, your survivors will cherish forever your heartfelt goodbyes.
When people are seriously ill, we tend to get caught up in statistics and averages: How soon will the illness progress? How long do I have left? These can be helpful to know, but they don’t always provide spiritual and emotional comfort.
Even if you are certain to die from this illness, you can find hope in your tomorrows, your next visit from someone loved, your spirituality. At bottom, hope means finding meaning in life-whether that life will last five more days, five more months or five more years.
If faith is part of your life, express it in ways that seem appropriate to you. You may find comfort and hope in reading spiritual texts, attending religious services or praying. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of your illness, realize that this is a normal and natural response. Find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.
Many of us grew up believing, ‘Do it on your own so you don’t have to depend on anyone else.’ But confronting a terminal illness cannot and should not be done alone. As difficult as it may be for you, you must reach out to your fellow human beings. Most of us know who we feel comfortable turning to when we are under stress. Whom do you turn to? Give yourself permission to reach out for prayers, support and practical assistance.
Hospices are an indispensable resource for you. They are well-staffed and trained to help both the dying person and the dying person’s family. Their mission is to help the dying die with comfort, dignity and love, and to help survivors cope both before and after the death. They often offer support groups for people with life-threatening illness. You might also consider seeing a counselor one-on-one.
Whatever you do, don’t isolate yourself and withdraw from people who love you.
Dr. Alan D. Wolfelt is a noted author, educator and practicing grief counselor. He serves as Director of the Center for Loss and Life Transition in Fort Collins, Colorado and presents dozens of grief-related workshops each year across North America. Among his books are Healing Your Grieving Heart: 100 Practical Ideas and The Healing Your Grieving Heart Journal for Teens. For more information, write or call The Center for Loss and Life Transition, 3735 Broken Bow Road, Fort Collins, Colorado 80526, (970) 226-6050 or visit their website, www.centerforloss.com.
Copyright 2007, Center for Loss and Life Transition