Motorcycle Diary: Living While You Are Dying

By William Perry

When I learned that I was dying, my Terminal illness presented me with an exceedingly difficult and contradictory challenge; I’m dying, I know I’m dying, yet it is my nature to want to live.

My thoughts in this piece are intended to offer another option, through how I am dealing with this tension and to continue to live even though I am dying.

First, I acknowledged I was Dying, seeing it as the first step to living the rest of my life. The onset of my illness was not overly sudden nor unexpected, and the usual feelings of shock and numbness were minimal. The feelings, however, manifested, which are a natural and necessary response to painful news.

When my mother was diagnosed terminal, she found that she could only cope with her new reality in small doses. She first came to understand it with her head, and only over time came to understand it with her heart.

To acknowledge I›m dying was to let go of the future. It is to live only in the present. Likely a good message in that. I did not find any easy way to do this, and I will probably struggle with this task every day until I die. I know that if I work at acknowledging the reality of my coming death, however, instead of denying it, I feel that I will open my heart and mind to the possibility of a new, rich way of living.

Discovering that I am dying naturally forced me to take inventory of my life. I have a right to have questions, fears and hopes - as we all do. Illness establishes new directions and often causes some questioning of old directions. New thoughts, feelings and action patterns can emerge. The unknown invited me to question and search for the meaning of my life, in the past, present and future. Not a bad exercise even if I wasn›t dying.

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 I respond right now is to discover how I 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. My parents taught me that.

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 communications 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. For me that meant not being coddled.

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. Again, there is no wrong way to process dying.

The image I have included best illustrates the process to me. I started at the middle point: narrow in my focus. As I progressed through the process, my awareness increased, as did my acceptance not only for my situation, but also the varied aspects of my life. Eventually, I know, I will transcend the outer ring. Each of my children spent time at Sick Kids, usually with normal childhood illnesses. Talking to kids in the cancer wards, I could see their progression through the circle fast-tracked. I was acutely aware of their inner peace as they neared the outer rings of the circle.

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. A new TV series, ‹The Big C› with Laura Linney, discovers the many aspects of being diagnosed ‹Terminal›. It›s a good show to watch. besides I like Laura Linney›s work

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. My daughters› reaction were all different, ranging from crying to outwardly angry at me. And that›s all good.

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. Don’t over explain, but do answer any questions they may have. An old friend died a few years back of cancer. Her favourite saying was, «I can deal with anything, as long as I know the score.»

Many people are taught as “patients” to be passive recipients of the care provided by medical experts. But don’t forget this - 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.” It›s not about them, it›s about you.

Learn about your illness. Visit your local library and consult the medical reference books. Request information from educational associations, such as the Canadian Cancer Society: http://www.cancer.ca/ 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: saying good-bye to those you love. When you feel you are ready, consider how you will say good-bye. 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. Your survivors will cherish forever your heartfelt good-byes.

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 years. Case in point: I was told in the Spring of 2007 to celebrate Christmas early. Nuff said?

 If faith is part of your life, and it is for me, 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. I find God listens well, regardless of the time of day. My personal challenge has been to listen to the answers, because they are always given.

 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 whom 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. It really can help...I know

Whatever you do, don’t isolate yourself and withdraw from people who love you.

I have worked over the years, to develop the following themes that myself, a person with a terminal illness might want to contemplate.

 I set Four ‹tasks› for myself as I am dying

These are my rudimentary notes towards thinking about four possible ‹tasks› or important life issues for a person with a terminal illness:

 ‹What was this life all about? What did I learn in my life?›

1. The need to find meaning in life.

 Life review. What was this life all about? What did I learn in my life? What did I do with it? What did I give to others and what did I receive from others? Did I live according to my beliefs and priorities? What are my priorities now?

 (2) The need to heal relationships, to deal with unfinished business, make a deep connection and let go.

Acknowledging difficulties, joy, love, resentment, anger, good and bad, etc, aiming for forgiveness. Forgiveness and compassion towards self and others. Working through and sharing grief, reaching and sharing joy. Opening up to the present. Living in the moment. Settling practical affairs, making a will, etc.

(3) The need to understand the meaning of suffering and have a means to transcend the unavoidable suffering of dying.

 A lot of the pain we experience is of psychological origin. What are you learning from this crisis? Can you see anything positive in this? Has this crisis become an opportunity for you (to let go of status, job, roles, hopes, etc)? Have you through this experience been able to make a deeper connection to life? Do you have a means to alleviate anxiety? Do you use meditation or prayer to help you in this process of letting go, of your body, of your life as it has been, etc?

 (4) The need to understand what death is and to prepare for it in the best way possible. What do you believe death is ? What do you believe happens at death? Do you have a spiritual belief and what is it? How can I or others help and support you in this? Prepare for death and let go. Make a living will, prepare a death plan and a funeral plan.

A visualisation exercise for unfinished business. No, this isn›t voodoo.

I find visualization for my ‹unfinished business› particularly helpful:

 First sit quietly and find in your heart the willingness to communicate your problem one last time and let go of it. Also establish your willingness to really feel heard and to listen to and hear the other person›s perspective on this problem

Now visualize the person with whom you have unfinished business. Imagine this person is sitting in front of you looking exactly the way you remember her; but now with one very important difference: consider that she is more open and receptive than ever before, and this person can really hear everything you have to say.

 Reflect on what has been the main difficulty for you, without rekindling the emotions attached to it, as best you can. Imagine that you are now telling this problem to the person in front of you, remembering that she is very receptive and genuinely able to hear you. Once again reflect and see if you have any other unexpressed problems, and imagine telling them to the other person.

Next, take a pen and paper and write down what you have just considered saying. Write out the problem, as responsibly as possible, without attacking or defending. Remember that you are speaking to the other person›s open heart and that she is receptive and can truly hear you.

 ‹Visualize allowing the other person to express her side of the problem› Now, visualize allowing the other person to express her side of the problem. Just begin writing and see what happens. Since you have been speaking to her ‹best side› and your feelings have been heard, her response probably won›t be what you expect. Next, write down any other problems - old angers, regrets, attachments, or fears - you may have had with the person. Again, allow her to respond to you with her perspective.

Continue writing both parts of this dialogue and expressing all the layers of your difficulties with the other person, until you feel you are no longer harbouring anything negative in your heart. If the other person had previously hurt you, see if you can now extend forgiveness to her. If you realise that you have hurt the other person, ask her forgiveness. You might reflect that the best part of the other person would understand your regret, and would not hesitate to extend her forgiveness to you. Allow yourself to receive the healing love of this forgiveness, and let go of any feelings of guilt or selfcondemnation.

Finally, look into your heart once again and see if there is any appreciation and love for the other person - any positive feelings which you have been holding back. Communicate your love in writing, and, thanking the other person, say good-bye. You can even envision the person turning and leaving. As they leave, ask yourself truthfully: Are you really letting go now?

 I realize that this sounds like a «How-to-Guide», and I assure you it wasn›t meant to be. This was and is my process. You see, I usually don›t give advice. I live my life, discover what works for me, and if anyone finds any value in any part of what I describe, just know that I haven›t placed any energy into outcome. Besides those who know me can attest - It›s all about William. :-)»

The Original Article Appeared in the 20th Edition of the Busted Knuckle Chronicles 2012