Wednesday, December 05, 2007

Of Hope, Volcano Gods, and Pain

Hope may be a thing with feathers , as Emily Dickinson once said, but twenty-first century curiosity regarding the meaning and power of hope have led to more scientific inquiry in regards to that which gives life meaning and purpose.

Reading Jerome Groopman's The Anatomy of Hope: How People Prevail in the Face of Illness, hope appears to be a winged friend with spiritual, physiological, psycho-emotional, and philosophical meaning. As a physician examining hope in the setting of life-threatening and/or debilitating illness, Groopman views hope through the eyes of researchers, physicians, and patients in an attempt to quantify and qualify how hope can not only assuage the suffering experienced when ill, but possibly alter the course of illness through the physiological changes brought about through belief and the use of the mind.

Far from a metaphysical inquiry, Groopman's book uses concrete examples from his hematology-oncology practice, his own struggles with chronic pain, as well as his interviews and meetings with scientists and researchers apparently at the cutting edge of their fields. It is inspiring reading, and quite thought-provoking on many levels.

For myself, multiple chronic illnesses have insidiously crept up on me in the past few years, insinuating themselves in my life, making themselves at home in my personal orbit. Unwelcome and unrequested (well, consciously, anyway), they are nonetheless here for the moment, and hope for relief and recovery is an ongoing and daily process. Multiple Chemical Sensitivity, chronic myofascial pain, an apparent sleep disorder in the form of Restless Legs Syndrome, hyperlipidemia, gastroesophageal reflux disease, major depression, Post-Traumatic Stress Disorder---it's enough to make a nurse apply for disability. Still, hope lingers---sometimes by a thread---and I work towards relief, and towards remission if not cure.

Just a few days ago, I underwent five injections to my spine---medial branch blocks, to be exact---in the hope (there's that word again) that these injections would bear out the theory that the offending nerves can be temporarily shut down. If enough pain relief was experienced in the first few days after the injection, we would then proceed to schedule a Radio Frequency Ablation of those nerves, wherein the offending nerves are obliterated with radio waves, perhaps never to be seen (or offend) again.

Leading up to the injection procedure (which had already been rescheduled twice), I vacillated between hope and a resigned knowledge that, so far, nothing else has really worked. Based upon my reading of The Anatomy of Hope, my own perception of the potential for pain relief from this procedure may or may not have some bearing on the actual outcome. As Dr. Groopman explains, scientific subjects given placebos will often report the same symptom relief as the subjects given the "real" medicine or treatment. Why is this? It is seemingly based on a belief that the treatment will work, although the science behind the Placebo Effect is much more complicated than just simple belief. Still, based upon my previous experiences of mild or absolutely no relief from similar procedures, I have been hopeful yet guarded in my expectations of the potential outcome. So far, as of this writing, no pain relief has been experienced from the procedure.

In the course of his book, Dr. Groopman has an appointment with a well-known pain specialist, Dr. James Rainville, in an effort to seek treatment for his own chronic pain. The ensuing discussion is revealing:

"You are worshiping the volcano god of pain," he declared. "The volcano god of pain is your master. What do I mean that you are worshiping the volcano god of pain?" he asked. "You interpret pain as a red flag, a warning that you are doing damage to your body. So you sacrifice things that you love, activities that give your life joy, to be kept free from pain. You say to the volcano god: 'I will give up walking long distances if you keep me out of pain. I will give up lifting my children if you keep me out of pain. I will give up travel, because long trips stress my spine. Just keep me from pain.' "

"But this god is never fully satisfied with any offering; It is appeased for only a short while. So the more your sacrifice, the more the god demands, until your life contracts, as it has, into a very, very narrow space.

"I believe you can be freed from your pain. I believe you can rebuild yourself and do much, much more."

"Bullshit talks, results walk," he said. "You think what I am saying is complete bullshit. You've lived all these years without any real hope, and it's hard to open that door and glimpse a different kind of life. It's your choice: to try or not to try. You can walk out of my office now and believe everything you've believed for the past nineteen years, and live the way you have. Or you can test me. And I'll tell you I'm right."

Whether Groopman recovered from his pain or not (he did) is beside the point as far as I'm concerned. The fact that Dr. Rainville challenged Groopman's belief system about his pain, and offered him a hope of change and relief beyond his wildest dreams was, to me, as profound as any cure or remission. The explanation of the volcano god and his insatiable hunger for sacrifice of life's pleasures is striking, and an image that will remain with me forever.

Interestingly, since my pain began to be more debilitating, I maintained an attitude that I would not sacrifice things I love to do in the interest of the avoidance of symptoms. Yet, taking stock of my lifestyle, I can easily identify the changes I have made to accomodate my pain. Just this past autumn, I sold my cross-country skis. I refuse offers of kayaking with my brother due to the pain the paddling can cause. I don't go hiking in the woods and mountains like I used to. I curtail my bike-riding to shorter rides with fewer hills. Changes have been made, and pleasures have been curtailed. Is this a sign of giving up hope? Have I acquiesced to the volcano god of pain? Has he managed to override my powers of hope and faith in recovery? Do I dare hope for the eventual cessation of my pain? Is my constellation of chronic illnesses something with which I will struggle for the second half of this life, or is there a true possibility of remission or cure on all fronts? It is a wild ride and a tough row to hoe, and I would never wish such a struggle on anyone.

Life on this earth is meant to be embraced and enjoyed, but, as the Buddha said several thousand years ago, "Life is suffering." The Buddha did not simply mean that we must therefore unquestionably suffer in this life, as could be inferred from the statement when taken at face value. Rather, we suffer from our attachments, from our own human machinations, and by adhering to those fears and beliefs which bind us to our suffering.

I do believe that it is possible to escape the suffering of my illnesses through treatment, belief, and deep personal and spiritual work on myself. I also believe that it is possible to remain symptomatic without complete relief, yet to also succeed in lessening---or completely diminishing---my suffering, even if the symptoms still exist. The suffering is not the pain itself. The suffering is my reaction to the pain and its manifestations. Yes, I do worship the volcano god at times, and at others I flip him a solid middle finger and a firm "Fuck You!" Be that as it may, my pain is mine to live with, and it is also mine to release.
As for that volcano god, this evening he has gotten the best of me, my irritability rising as pain in my back gnaws at my psyche with its insistent discomfort. The pain---picture a baseball made of lead inserted just to the right of the spine---is a constant reminder that all is not right in my world. Even as I make good life choices, decrease stress, and reorganize my life, the pain holds on, keeps its grip, and keeps me in relative agony.

Yes, hope----I continue to hope. Hope for a remission of my pain, a decrease in symptoms, a decreased sense of disability. I will hang on to that hope for as long as I hang on to this problematic yet beloved body. If hope is a thing with wings, I invite it to fly into my tree right now, and make a nest lined with the softest of thoughts and and prayers for health and healing for me, and for all who suffer.

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