Stations of the Heart (2013)

by Richard Lischer

This is a moving and important book by the father of a 33 yo man with metastatic melanoma.  It chronicles the last three months of Adam Lischer's life.  The book describes the medical, spiritual and philosophical aspects of Adam's death.  It's a valuable book.  I have typed out a few pages of quotations which I will eventually edit and link to this site.

There are many medical details that a dermatologist would like to know, but they are less important than the view from the family's standpoint.

A Life Beyond Reason

Chris Gabbard, an associate professor of English at the University of North Florida, has published an essay on the evolution of his perspectives regarding his severely handicapped son, August. Professor Gabbard has much to teach us about the depth of parental commitment and how caring for a special needs child can enhance the outlook of the caretaker as well.

Gabbard writes: “To admit how August has changed me is not to assert that what he has given me compensates for what he, my wife, my daughter, and I have lost on account of the poor decisions made by the hospital where he was born. There is no getting back what we have lost. Compensation is just a trope, and belief in compensation is as superstitious as belief in the medieval notion of correspondences. Besides, nothing can compensate for what all of us have had to give up.

“That is not to deny that August, along with my daughter and my wife, is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.”

Professor Gabbard’s essay can be accessed in its entirety here. It will also appear in Papa, PhD: Essays on Fatherhood by Men in the Academy, published this month by Rutgers University Press.

Closing the Chart by Steven Hsi (2004)

Dr. Steven D. Hsi, a family physician and father of two young sons, was diagnosed in 1995 with a rare coronary disease that caused his death five years later at the age of forty-four. Throughout his ordeals as a patient, including three open-heart surgeries, Dr. Hsis outlook on the teaching and practice of medicine changed. In 1997 he began a journal intended for publication after his death. Written with the assistance of newspaper columnist Jim Belshaw and completed posthumously by Hsis widow, Beth Corbin-Hsi, Dr. Hsis writings urge his colleagues to become healers, to look at their patients as human beings with spiritual as well as physical lives.

"Every patient should read it, if only to be made aware that they are not alone with their thoughts. Every spouse of a patient should read it. . . . Every medical student and physician should read it to learn that the biology of the disease is really just a small part of the illness" ~John Saiki, M.D., Medical Oncology, University of New Mexico

"Dr. Steven Hsi asks his fellow doctors to be more than physicians. He asks them to be healers. He says that when he thinks of healers, he sees traditional medicine men, people who are integral parts of their communities. They are in touch physically and spiritually with the people they serve."~ Tony Hillerman

Here is a review I wrote a few years back: Closing the Chart Review

"Closing the Chart" can be found inexpensively at Abebooks.com

Aidan's Way by Sam Crane (2004)

“Aidan's Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human.

This life we're given comes in its own season and then follows its vanishing away. If you're at ease in your season, if you can dwell in its vanishing, joy and sorrow never touch you. This is what the ancients called getting free.

...Aidan's crisis had liberated me in a way. We had come close to death, had looked over the edge of the precipice, and then moved back. He would die at some point, perhaps young, maybe very young. He was profoundly disabled, even more so than he had been before. But his near-death had altered my vision. The length of his life or the physical particulars of his life were not as important as the mere fact of his life itself. He was following along in his own season, moving on the currents of the Way....

Sam Crane, a professor of Asian Studies, has to cope with more than he ever imagined when his son Aidan is born with severe disabilities. Turning to the Tao Te Ching and Chuang Tzu -- he comes to understand Aidan. Gradually, we become aware of Aidan's profound impact on others, including his father, his family and the larger community.”

Aidan's Way can be found at Abebooks.com

A Whole New Life: An Illness and a Healing by Reynolds Price (1994)

“Reynolds Price has long been one of America's most acclaimed and accomplished men of letters. This is his most intimate story yet -- a memoir as compelling as any work of the imagination.

In 1984, a large cancer was discovered in Price's spinal cord. Here, he recounts his battle to withstand and recover from this devastating affliction. He charts the first puzzling symptoms, three surgeries, the radiation that paralyzes his lower body, the occasionally comic trials of rehab, the steady rise of pain and reliance on drugs, and his discovery of biofeedback and hypnosis. Beyond the particulars, Price illuminates larger concerns, such as the gratitude he feels toward family and friends and (some) doctors, the abundant return of his powers as a writer, and the "now appalling, now astonishing grace of God." More than the portrait of one person in crisis, A Whole New Life offers honest insight, realistic encouragement, and authentic inspiration -- and stands as one of Price's crowning achievements.”

Available at Abebooks.com starting at one dollar.