Telling our stories can also raise awareness of how far we-both men and women-haven't come in actually treating chronic pain, especially the most severe and frequent forms, despite significant strides in understanding its neurochemistry and triggers. Popular media reports on pain, often in the form of news-magazine cover stories, are often devoted to overpraising the latest so-called wonder drug (read: "It's so new that we don't know its side effects yet") as pain patients' savior of the day. Providing testimonials are a carefully selected group of patients, very often fed to journalists by pharmaceutical companies and the doctors interviewed. As a result, pain patients who aren't cured by the latest "miracle discovery" or who can't solve their pain through sheer gumption and force of will feel their already debilitating sense of isolation and self-doubt compounded.
In 1979, in that poster board display, I summarized the major treatments of pain of that era: acupuncture, drugs, and biofeedback. Today, more than twenty-five years later, despite some notable gains, this is still the case. Although modern medicine allows us to replace severed limbs and excise the most precariously placed brain tumors, our effectiveness in treating chronic pain and many other disabling invisible illnesses has not significantly advanced. In fact, in reality, we are hardly better off than in 1979 B.C.-when the people whom we know today as the leather-faced mummies in museums walked the earth, all too conscious of their humanity because of their crushing toothaches, their shingles, their labor pains, their cluster headaches.
When I was twelve and unburdened by chronic pain, I couldn't yet describe the full experience, neither physically, emotionally, nor spiritually. This wasn't possible until years later, when I was twice that age and one continuous headache gradually started to define itself and then take nonstop residence behind my left eye and in my left temple, like a bad, inconsiderate roommate who never leaves the apartment to give you peace. I then found myself starting a trial, as well as going on trial, as a chronic pain patient. I was in the odd position of playing for real that board game that I had devised so many years ago, following another circuitous, unpredictable, and ultimately (somewhat) enlightening path.
The statistics below are not from a particular chapter of All In My Head, but were provided by the publisher as background information for potential interviewers. The information is included here because, firstly, it contains a lot of interesting facts and stats, and secondly it provides a useful overview of the book itself.
Chronic Daily Headache (headache at least 15 days/month lasting at least 4 hours per episode)
From the preface to All In My Head, pages ix - xvi. Copyright Paula Kamen 2005. All rights reserved. No part of this book maybe reproduced without written permission from the publisher, Da Capo Press.
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