A Journey: Creative Grieving and Healing

Contents

ACKNOWLEDGMENTS

FOREWORD

ABOUTJOHN DEFRAINAND NIKKI DEFRAIN

BEGINNINGS..

GRIEVING AND HEALING: TWO ASPECTS OF THE SAME PROCESS

IDEAS ABOUT LIVING WITH AND THROUGH GRIEVING AND HEALING

HOW HEALERS REALLY LEARN ABOUT LIVING WITH ILLNESS AND DISABILITY

WHAT IS HEALING?

WHO IS A HEALER?

CREATIVITY AND HEALING

FINAL THOUGHTS: A CREATIVE APPROACH TO HEALING

EPILOGUE

AUTHOR’S NOTE: Please look at the Following References and Resources Section

NOTES

REFERENCES

ADDITIONAL RESOURCES

This book is dedicated to Meredith, Joshua, and Mark As well as to John DeFrain, Nikki DeFrain, and Linda Rivers And all my patients/clients over three decades of medical practice.

ACKNOWLEDGMENTS

I never could have finished this book without the encouragement, suggestions, editorial recommendations, and support of Meredith, John DeFrain, Nikki DeFrain, and Linda Rivers. This book would not be nearly as coherent without their suggestions and recommendations about ideas, examples, clarifications, as well as their editing of language and punctuation. I especially am thankful for Mark Campbell’s contribution of the beautiful design for the book cover, and his invaluable marathon editing assistance for the final manuscript version. I am specifically grateful for everyone’s encouragement to tell the story of my own illness, those of other people from my years of medical practice, as well as illuminating accounts from the books I have read.

I express my heart-felt appreciation of my many patient/clients who trusted me with their health problems and their life stories for over three decades. I learned more from them than I did in all of my formal medical education and medical conferences over the years of medical practice.

The books I have read, especially during the years since I became ill, have inspired me. These writings offered me an effective escape from worrying about my own illness, and showed me many ways to survive and thrive. I am especially thankful for the bravery and honesty of the seriously ill and/or disabled people who wrote books about their own experiences, which provided one of the important sources of information and inspiration to write this book.

FOREWORD

By John DeFrain and Nikki DeFrain

Our dear friend Dr. John S. Campbell is on a journey in life, an amazing journey as he learns to live in a meaningful way with chronic, disabling, and most likely terminal illness. We have known John for almost thirty years. He was our energetic, kind, and dedicated family physician, working with us for many years to ensure our personal health and the health of our three growing daughters. He shepherded our family through countless medical crises, mostly small ones, some medium-sized ones, and a few considerable crises. He was thoughtful, considerate, honest, and engaged as a physician.

And then, for the past eight years, we have known John as our personal friend. We have listened as the story of his mysterious illness—as baffling to his caregivers as it is to him—unfolded over time. We have watched as his body started to fail him in seemingly endless ways. But his spirit in many ways, though battered by the trauma of chronic illness, remains strong. He is still the same John we have always known. And frankly, we do not pity him for his terrible illness. Rather, the most powerful feeling we have is a sense of awe: we marvel at his growth and the gentle way he navigates through life in the face of relentless and progressive difficulty. We all die, he seems to be telling us. What is far more important is that we live a meaningful life before that time comes.

John remains thoughtful, considerate, honest, and engaged as a physician forced to retire at a relatively young age, forced each day to endure severe disabilities. And we have watched him grow through this personal and family tragedy. John’s autoimmune illness has severely compromised his immune response to countless illnesses, and forced him into a very reclusive life. Contact with other people and the myriad bacteria and viruses they transmit can have literally life-threatening consequences for John. He runs the considerable risk that a trip to the library, a friend’s home, the doctor’s office, the gym could kill him.

Therefore, he has reinvented his life and reinvented his soul. He now lives the self-defined life of a reclusive scholar. His lifeline to the outside world is his loving and resourceful spouse Meredith, who John notes is bearing a considerable share of the burden his illness brings. Even though wives have all the goods on husbands and know their foibles better than anyone on Earth, Meredith is discrete about her husband’s failings. But no one is perfect, and even without any evidence we are certain, thus, that John is not a saint and never would want to be nominated for such a lofty position. He is, however, a good man and that is all a wife, a family, and friends could ask.

John maintains an active life with regular telephone contacts with his grown sons, his friends, and colleagues. And, he has reinvented himself as a scholar. He does not make sense of the world by active engagement in the whirl of the medical clinic or other aspects of normal daily life that most of us take for granted.

He makes sense of the world and stays connected by living an active life of the mind: reading, thinking, discussions with friends and colleagues, and writing. John has taken a dreadful situation and, with a good deal of support, energy, and love from family and friends, has become a very successful scholar.

His illness, in a way, has been a blessing that no one would ever ask for, no one would ever want, and from which all of us—John included—can benefit. John’s chronic and terminal illness has made it possible for him to focus on critical issues that countless human beings face. His disability has given him the time, the motivation, and the sense of urgency necessary to immerse himself in life and death issues and find meaning for himself and for all the rest of us. In essence, he has entered the priesthood of living and dying, and his reading and thinking about countless books on life in the face of adversity has given him the right and the responsibility to write his own book to add to the accumulated wisdom on the topic of humankind in crisis.

The two of us know deep down that John Campbell understands this all very well now, because we face our own difficulties in life: Nikki DeFrain has been challenged by rheumatoid arthritis for more than twenty years; and John DeFrain, her husband, has been affected by the disease, also, in a more modest way, forced to find the sensitivity and strength to support his best friend and wife through her pain and both of our fears for what the future will inevitably bring.

John Campbell shares with us the importance of creative grieving for your external losses so you can creatively heal internally. This will allow you to gain the strength to want to go on in life and face what new challenges your illness will bring. Assertively working through your grief frees you to reinvent your life, giving you permission to be as productive as your illness allows you to be. You may not be following the same path in life you had set out for yourself earlier, but you will gain the power to reinvent your future, your feelings of usefulness, and your appreciation for each day. As John Campbell would say, You are prepared for the worst, but expecting the best.

Again, as John Campbell and countless others have found, human suffering can be a catalyst for growth. Though John and Nikki DeFrain are dismayed by the difficulties that health-related problems can engender, we are also elated by the strengths that we have developed through all of this, and moved deeply by the bond of love and care and concern that has grown between us and made us even closer as a couple.

We encourage you to read the story of John Campbell’s struggle with a devastating chronic illness, an illness that will most likely end his life. It is also the story of a man who has grown in spiritual stature while his body in many ways continues to fail him. He has paid a terrible price for this wisdom, and we all need to dig down deep to find our own wisdom so that we may understand what John is telling us.

ABOUTJOHN DEFRAINAND NIKKI DEFRAIN

John DeFrain, Ph.D., is a Professor and Extension Family and Community Development Specialist at the University of Nebraska-Lincoln. For 30 years he has focused his professional interests on research and educational programs to develop couple and family strengths, today from a global perspective. He has co-authored and co-edited 18 books on family issues and more than 90 professional articles. Recent books include: Marriages and Families: Intimacy, Diversity, and Strengths, 5th Edition (with David H. Olson); Building Relationships: Developing Skills for Life (with David H. Olson and Amy K. Olson); and Family Treasures: Creating a Strong Family (published by the University of Nebraska-Lincoln Extension Division).

Nikki DeFrain, M.S., is a homemaker who now has time to work on research areas that hold a special interest for her. Research with her husband John DeFrain and two other colleagues will culminate in the publication in 2007 of The Dark Thread: Surviving and Transcending a Traumatic Childhood by Haworth Press in New York. She also has time to travel with her husband around the world learning about families in many cultures. Her undergraduate degree was in early childhood development from the University of Wisconsin-Madison, and her Master’s degree was in family studies with an emphasis in gerontology. She has worked and volunteered in many positions as a teacher of young children, family studies researcher, conference organizer, counselor of older people and their families, self-help leader for the Arthritis Foundation, and in various community services. She and John have raised three wonderful daughters to adulthood, and family issues have always been a top priority for her.

BEGINNINGS..

This book deals with the way life really is, not the way we wish it were. My image of my future and myself suddenly and drastically changed in a matter of weeks. It was the last week in September, 1997, and my body was covered with bruises. No significant injury caused this. I knew, but did not allow myself to think about, the obvious fact that I must have a serious problem with my blood-clotting system. I was frightened and anxious, yet in denial. Intellectually I knew the variety of illnesses which could cause this massive bruising, but emotionally I was totally unready to deal with this knowledge. I was also deeply angry, but unwilling to admit this to myself or to anyone else.

In the 51 years of my life prior to 1997, my body had survived a number of various medical/physical, and emotional challenges and crises. Before the last week of September, 1997, I seemed to be only showing the expected wear and tear of 51 years of living. I had survived a serious congenital illness in infancy and