Wonderful New Book About Living with Chronic Pain

A few weeks ago, I talked with a friend who was about to have a hip replacement operation.  She has been in severe pain for quite some time and as we chatted she said, “you know Suzanne, the insidious thing about pain, is that, unlike other conditions, it is impossible to see.  For example, here we are, and can you tell that right now, I am in so much pain I could scream?”  Indeed, I could not.  As we sat chatting, she looked great, almost luminous.  And yet, she was in agony.  If she had had cancer, God forbid, or some other disease, she would have been rail thin, pale, sweaty, fainting.  You could see it and feel for it.  But she seemed in perfect form and yet,was  in an agony as profound as anyone with a major, life threatening illness.

As I talked to her I was reminded that I have been remiss in not writing about an incredible new book our series on The Culture and Politics of Health Care Works published in the fall.  The book is called Inside Chronic Pain: An Intimate and Critical Account.  It is written by Lous Heshusius and is Commentary by Scott Fishman, M.D. who is a pain specialist. http://www.cornellpress.cornell.edu/cup_detail.taf?ti_id=5454 The author writes of her experiences — a long and unrelenting journey — into the world of chronic pain that began after she had a car accident that did irreparable damage to her neck.  Her life has been dominated by pain ever since.  She talks about how friends, relatives, colleagues, and most importantly, health care personnel, have reacted to her endless struggle to deal with her ever-present companion.  The book is amazingly well written, which has little to do with the fact that I was its editor and everything to do with the skill of its author.

People may not want to read this compelling account.   In a way, I think people fear listening to people who are in pain because unlike other illnesses, pain is something that it may seem impossible to prevent.  You can try to eat your way free of diabetes, unsalt your way free of hypertension, anti-oxidant your way out of cancer, and exercise your way out of heart disease.  At least, that’s the American fantasy.  But pain?  Heshusius’ anguished memoire reminds us that you can survive a car crash and medicine can rescue you — but then…what?

One of the most beautiful and important things about this book — aside from its writing– is that it asks us to come to grips with a very human problem — what do you do when confronted with suffering we can’t fix?  Doctors and nurses, and physical therapists work on Heshusius with some success, sometimes.  But her pain just won’t go away.  And the temptation is to suggest that she is getting secondary gain from it.  This concept is really insidious because illness does something to your brain chemistry and we do indeed become involved in a search for a cure, or for relief.  And that means we become dependent on doctors, healers, chiropractors, PTs, you name it.  But is our relentless search for relief really a sign of weakness or pathology?  Or is it a sign of our desperation and, finally, of our ability to hope?  Heshusius also talks about people who claim her pain is somehow in her head –not her neck.  But how could pain not affect your emotions?  Which is something Scott Fishman discusses with great eloquence in his commentary.

I have to use the trite phrase that Inside Chronic Pain is a “must read.”  It’s not only that, it is an enlightening, and humanizing read.  She doesn’t only challenge medical professionals, it challenges us all.  As friends and family members, we all have to deal with pain — not just physical pain like her’s, but emotional pain.  We are always confronted by people who suffer and who don’t get better.  There’s the friend the pathological horder who can’t bear to throw anything out and seems to be limiting many options because of a lifetime’s love affair with needless stuff.  There’s the friend or relative who won’t leave an abusive relationship, the one who can’t ask anything for himself.  There’s the person who doesn’t — or so it may seem to us — recover quickly enough from the death of a loved one, or take our good advice about what to do with their kids.  We stand helpless in the face of our own and other people’s seemingly intractable hold on what we think they should let go.  And, of course, we always think we are exempt from this kind of denial and resistance, or would be in the face of the same situation.

Read this book.  Put it at the top of your list if you are a doctor, nurse, PT or involved in any way with health care.  Read it if you are in pain or have suffered from chronic pain.  But mostly read it because you are a human being and because what it asks us to confront are the challenges — and joys of life itself.  Along with its commentaries, I think its one of the best books ever written about a subject we reflect on too little and often too late.

  • Penny Oldfather

    Dear Ms. Gordon,
    I am hoping you can help me. I am in search of my dear friend, Lous Heshusius. She was a mentor to me in qualitative methodology as I was earning my doctorate many years ago. We stayed in touch for a long time, but the contact information I have for her is out of date. I am a retired professor from The University of Georgia. I am very anxious to be in touch with Lous. Would you please let me know if you know how to reach her? Or – if you would be more comfortable, please contact her to let her know I am wanting to find her. I live in Athens, GA. My phone number is 706 614-8410.
    By the way, I really appreciate the Lous’ book on chronic pain that you edited. Well-done and important. Sincerely, Penny Oldfather poldfath@uga.edu

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