Dancing at the River's Edge

The Triumphant Return of Mr. Rot

I’ve been in a rough campaign battle and I’ve lost – again. According to my personal polling results, it wasn’t even a close race.  I am not going to be elected The Well-Woman with at least a four-year term guarantee.

I call my autoimmune disease Mr. Rot and he has returned.  He’s right back at my side, as close as he can get to me and is he ever triumphant!  He and I have been partners for so long it seems appropriate to give him a name. I have an atypical form of Wegener’s Granulomatosis, named for a distinguished doctor, who, unfortunately, was also a Nazi doctor.  There is continuing discussion in the medical community about changing the name of the disease. Strip him of his awards posthumously, but keep the name. If ever there were a Nazi of a disease, this one is it.  But, I just call it Mr. Rot. It suits his behavior. He feasts on my cells, munches on my tissues and tries to take away my chances for happiness and success.  Once again we are at war, with no end in sight.

I officially declared part of 2008 The Summer From Hell.  I moved from the bed to the couch to the hospital’s infusion room to admission as an in-patient inside the “Slammer” (my term for the hospital).  My jokes about my condition have grown lame.  I no longer have the energy to quip that, while others may think they are chic with trips to Italy, France, England or country homes, nothing beats chic like an August adventure in Manhattan from bed to couch to hospital.

I am sad and numb; but even as he steals my thunder, I stubbornly refuse to let him take away my humor.  Mr. Rot is fresh and combative.  Why doesn’t he get out of town?  What I mean, of course, is why can’t he retreat from my body this instant?  At the end of the summer I was ready to be finished — take the staircase to the next energy field or the celestial gardens – or whatever particular metaphor or theological belief about the after-life you prefer.  Good-bye.  Ciao. I was so over it all – putting up with Mr. Rot, being brave, having friends insist how heroic I was, or that they had no idea I was ill at all because I looked so good.   But, I didn’t get that hall pass to leave forever. It wasn’t as easy as I thought it might be for a few blessed moments in the hospital. I was spared to live another day or more, and tell more tales.  That’s what writers do. I write my stories with the hope citizens on the “other planet” will also find the courage to go forward or draw a laugh of recognition from our shared experiences.

I continue on with Mr. Rot, and as in any relationship gone stale, we have reached the stall-and-wallow stage. However, I do bow before his power and pay him respect.  I spend the rest of my spark plug reserve attempting to make deals with him. I just quietly and talk only to him, “Here I am still sick as a dog and weary. Let’s have an agreement, okay, Mr. Rot?” I tell him he could play fair just once. “Why don’t you go away now, really disappear, for just a few years, and then you can come back.  You’ve been far too constant a companion.”  As usual, his response to me is physical, never verbal.  If he could it would be a resounding rejection of my pleas — “No way.  I am used to you. Besides, you know something, Alida?  I’ve got to tell you, you’re really a great hostess.” 

My reality trumps words and witty nonsense and I must stare him down. What is wrong now is that I’m so sick of being sick. I am hiding out from almost everyone.  I thought by my silence I had given my friends a holiday from my troubles.  It turns out I frightened them. Why can’t my performance as Mimi end?  Can’t I just sing that last aria, collapse, die, and get off the stage?  Get the hook. This Mimi is ready. I know I am ready. Curtain, please. But, just as I’m convinced I’ve had it with my life, I worry I might miss something.  Maybe I’m as unstoppable as this disease after all.

Now I am searching for a plateau named acceptance but do not wish to journey to a place called complete resignation.  I am as worn out emotionally as I have ever been.  A friend asked me whether there was a danger I would become bitter because of the disappointment of not having a real remission despite the treatments. “Bitter would take energy, wouldn’t it?” I respond in my well-rehearsed theatrical role as “Sarah Heartburn.

I might well be on the road to bittersweet, which is not a good destination for an aging woman with a seemingly vigorous disease.  Why is Mr. Rot so healthy and robust as I grow older, exhausted and sad in a way that takes words from me?  Without words do I exist at all?  A more terrifying philosophical concept sweeps through my brain-filters…without Mr. Rot do I exist at all? 

I wonder if I will finally succumb to what I have fought against since childhood.  Will I become a set of symptoms and manifestations of disease, totally eclipsed by Mr. Rot? Will he have the last laugh, the last dance, or in the worst-case scenario:  will he steal the very last word from my lips, or hop on my laptop and write my last lines.  He’s very crafty and he might well do that.   –But not just yet.

About the Authors

Alida Brill is a feminist social critic who has written on such diverse topics as medical and sexual privacy, the ethics surrounding the right to die, the role of gender in society, tolerance and prejudice and the conflict between the personal and the public. See her website for more.

Michael D. Lockshin, M.D. is one of the world’s leading experts in the long-term care of chronically ill people.  He is the Director of the Barbara Volcker Center for Women and Rheumatic Disease at the Hospital for Special Surgery in New York City.  He is Professor of Medicine and Obstetrics/Gynecology at the Weill Medical College of Cornell University. He serves as the Editor-in-Chief of the journal, Arthritis & Rheumatism.  In November of 2008, the New York Chapter of the Arthritis Foundation honored him with the Lifetime Achievement Award. See his website for more about his work, writing and research.

Press Release

Press Release: DANCING AT THE RIVER’S EDGE: A Patient and Her Doctor Negotiate Life with Chronic Illness

SCHAFFNER PRESS KICKS OFF 2009 BY TAKING THE MEMOIR FORM TO NEW HEIGHTS WITH ALIDA BRILL’S AND MICHAEL D. LOCKSHIN’S PROVOCATIVE MEMOIR DANCING AT THE RIVER’S EDGE:A PATIENT AND HER DOCTOR NEGOTIATE LIFE WITH CHRONIC ILLNESS

LOS ANGELES, CA- DECEMBER 10, 2008-Schaffner Press will publish Dancing at the River’s Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness January 8, 2009 in hardcover for an SRP of $23.99. The book will be supported by a series of signings, lectures and a radio tour starting in New York in early January, and rolling out across the country with emphasis on the east and west coast.

The dual memoir is a personal look inside the world of the doctor/patient relationship, as the reader learns of the day-to-day struggles endured by a patient with chronic illness, as well as the deep concerns and conflicts of the doctor who is engaged in the ongoing decisions to help his patients maintain a reasonably “normal” and full life. The book is an intimate portrait of the delicate balance between doctor and patient, and will help people who struggle with chronic illness, and the friends and family who support them. All topics are discussed, ranging from sex and suicide, to careers, fears and loneliness.

Publisher Tim Schaffner exclaims: “This book is a revealing and original look at chronic illness and the medical world. I am proud to publish this truly original dual memoir, and hope that it helps to bring comfort and understanding to all those living with, or caring for, a person struggling and living with a chronic illness.”

The book is already gaining momentum and buzz in all spheres of influence,

“DATRE is an extraordinary meditation on illness….” says Dave Isay, Executive Director, StoryCorps and editor of the bestseller Listening is an Act of Love.”

Film Producer (You’ve Got Mail, The X Men trilogy) and Lupus patient, Lauren Shuler Donner says of the book,” it delves into the intricacies and intimacy of chronic illness…..It illuminates the spirit…..”

and Paul Volcker states “Dancing at the River’s Edge…is about the trials and tribulations of chronic disease. I have been able to read it in advance and I tell you—I get no royalties from these books, but you ought to get a copy and read it. You won’t be able to put it down once you pick it up…”

Alida Brill is a social critic, essayist and author of several non-fiction books, including, Dimensions of Tolerance, Nobody’s Business and A Rising Public Voice. She lives in New York City.

Michael Lockshin, M.D., is one of the country’s leading experts in the long-term care of chronically ill patients. He is the Director of the Barbara Volcker for Women and Rheumatic Disease at the Hospital for Special Surgery and a professor of medicine and obstetrics/gynecology at the Weill Medical College of Cornell University. He lives in New York.

Schaffner Press, Inc. is an independent small press publisher in Tucson, Az., specializing in provocative and socially-conscious works of fiction and non-fiction, both reprints and originals whose books are distributed for the trade by IPG: 312-337-0747.

For further information on DANCING AT THE RIVER’S EDGE, visit the website at Schaffner Press or the following blogsites: news.schaffnerpress.com and Dancing at the Rivers Edge.

Also for further information about the authors, visit their websites: Alida Brill and Michael Lockshin

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SCHAFFNER PRESS

Tim Schaffner 520.743.1836 tim@schaffnerpress.com