Cell 2 Soul: The Humane Health Care Blog

About Illness Narratives

We have been interested in Illness Narratives for decades.  These are also called pathographies or autopathographies.

Composing your illness narrative can help your health care provider to make a more accurate diagnosis, and order more targeted tests and treatments.  It will also enhance most providers' empathy.

Here is some background information on Illness Narratives: Download The Stories Patients Tell

and a guide to composing your own Illness Narrative: Download Autopathography Guide

If you have specific questions please email DJ Elpern.

Sherwin Nuland on Depression and Shock Therapy

 TED Introduction:  "Sherwin Nuland was a practicing surgeon for 30 years and treated more than 10,000 patients. Now he is an author and speaker on topics no smaller than life and death, our minds, our morality, aging and the human spirit.

In this TED talk, Nuland discusses the development of electroshock therapy as a cure for severe, life-threatening depression -- including his own. It’s a moving and heartfelt talk about relief, redemption and second chances."  Well worth listening to.

 

Elyn Saks' Tale of Mental Illness

As a mental health law scholar and writer,  Elyn Saks speaks for the rights of mentally ill people. It's a gray area: Too often, society's first impulse is to make decisions on their behalf. But it's a slippery slope from in loco parentis to a denial of basic human rights. Saks has brilliantly argued for more autonomy -- and in many cases for a restoral of basic human dignity.

In 2007, deep into her career, she dropped a bombshell--her autobiography, The Center Cannot Hold.     In it, she reveals the depth of her own schizophrenia, now controlled by drugs and therapy. Clear-eyed and honest about her own condition, the book lent her new ammunition in the quest to protect the rights and dignity of the mentally ill.

This TED Talk by Elyn Saks is enlightening.

 

A Grisly Narrative of Love

"Nobody asks [us] dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high."  So writes, Emily Rapp in an Opinion piece about her child with Tay-Sacks disease.

Wilh all the fanfare about Tiger Moms -- Ms. Rapp's essay is an important glimpse of reality, far from the ivied halls of the Academe.

See Notes from a Dragon Mom.

A Soldier's Recollections from Long Ago War

Recently, a patient held me in thrall with a story from the European theater of World War II.

"I saw my father cry only twice.  The first time was at my brother Bob's wedding.  The second was when the doctors at the former Fort Devens Hospital told my parents, at my discharge from the service in 1946, that at the most, I had three years to live.  The doctors had diagnosed me with mitral insufficiency due to rheumatic fever.

This is how it began...  Read on: Download Armand's Story

The author, Armand Perreault, is an energetic 92 year-old retired French teacher from North Adams, Massachusetts.  If you wish to contact him, I will forward messages since I do not think he uses email.

 

 

 

 

The Pain Chronicles - By Melanie Thernstrom

"Melanie Thernstrom, an accomplished journalist and the author of two well-­regarded previous books, suffered for years from chronic pain associated with a degenerative spinal condition. When an editor at The New York Times Magazine asked her to write an article about various treatments for chronic pain, the research became an obsession. “Why do some people get better?” she wanted to know. “Was there a recipe for healing?” The resulting book, “The Pain Chronicles,” is an expansive, invigorating mix of medical reportage, history, memoir and cultural criticism."

This may be an important book for chronic pain sufferers.  See Pathographies Blog fore more books on pain.  Full book review of The Pain Chronicles is linked here:

via www.nytimes.com

Closing the Chart -- Book Review

This is the illness narrative of Dr. Stephen Hsi, a young physician who, at age 40 when most doctors are just hitting their professional stride, was diagnosed with Takayasu's arteritis --a rare, poorly understood multisystem disease that mainly targets the aorta.  At that moment, he entered a parallel universe as a patient with a major serious illness.  Over the next four years, he chronicled his life as the disease and the effects of three cardiac surgeries and numerous drugs played themselves out.  After his death in 1997 at age 44, his wife discovered her husband’s extensive illness narrative journals.  She and a journalist friend of his fashioned these notes into a remarkable book as a tribute to Dr. Hsi--a true labor of love.  This book will inspire and educate any physician or care-giver who reads it.

"There is a place in our busy lives for spending a little time with a dying patient. When I have taken such time, I have seen painful things and good things. My patients have expressed their anger and their hopes to me. And I hoped with them, for a cure, and for an end to their pain, and for peace. They faced death as I had faced it.  We had nothing to lose by laughing -- my patients were a joy to be with and I cherish the time I spent with them."

You can find a review at: Download Closing the Chart--Book Review

Against Medical Advice

is an important book about a young man growing up with Tourette's syndrome and O.C.D.  I listened to it on CDs from my local library.  It is a moving and important work, and it was co-authored by James Patterson, a best selling author.

Here is a review from Amazon which addresses A.M.A. better than I could.

This book was a phenomenal retelling of the life of someone with Tourette Syndrome. As a mother of three boys who all have the same diagnosis as Cory, I feel like I can adequately say that I am more of an authority on the subject than most. As I read through his life struggles, weeping through a great many of the pages, I could identify with much of the grief and pain that he and his parents have gone through. I believe that everything in the book was very accurately portrayed, from the lack of understanding of the educational system to the medical roller coaster ride of trial and error, not to mention the misery inflicted by social situations. I feel like the book was tastefully written to not bash the people who do not understand this condition, (including medical/mental health professionals) but to portray the frustration and mental anguish caused by this lack of understanding.

I highly recommend this book to all, but especially to those who have the fortunate opportunity to touch the life of someone with Tourette Syndrome. As is obvious in Cory's case, these children are incredible. They have to overcome so much more than the rest of us would ever dream of imagining just to live, let alone succeed. Thank you Cory, for sharing your life with us.

Three Wounded Healers

Dr. Bill Zeckhausen has prepared a talk on three individuals who have been a source of constant inspiration to him in his personal and professional life. Bill writes:

"All of us have been, are, and will be wounded, physically, emotionally, and spiritually. I believe at some level we all know that. I wish to introduce, or reintroduce for you three wounded healers, who by sharing honestly the process they’ve gone through, are a gift to us."

These sources of light are:
Jane Babin a poet and a lawyer with ALS
Rachel Naomi Remen: physician, writer, guru
Dan Gottleib a psychologist, philosopher and quadriplegic

Here is the talk: Download Montreal.pdf

My First Real Illness

Randy Rockney is pediatrician in Rhode Island.  His chronicle of cellulitis is well worth reading.

"I hadn’t expected to become a patient so soon. Having witnessed my 85 year-old father’s many medical adventures and misadventures, I didn’t look forward to my own illnesses, that time when, as stated in novels or biographies, “his health began to fail.” That was a long way off for me, I hoped, but then, when did my father first become a patient? Wasn’t it around his early fifties, my age now?..."

Many of us are doctors, but almost all will become patients at some time.  This fine piece chronicles those unwelcome, but inevitable, rites of passage.  To read in full: Download Rockney.pdf

With comments or questions, please contact Randy at:  RR