Hard Lessons

To paraphrase a Bruce Springsteen song, life has been giving me some hard lessons lately, about pain, loss, disability and hope. Years of chronic pain, my mother's death, my hearing impairment and other serious medical problems have sorely tested me. When I finally found a doctor who took my pain seriously, he asked me why I had checked "suicidal thoughts" on my new patient questionnaire. I told him, "I have 30 years ahead of me if I live as long as my mother did. I refuse to live in pain for another 30 years."

In all that I've learned and written since then, the most surprising discovery has been my ability to remain optimistic about my life and my future. If you hear despair, anger, frustration and fear in what I post here, please don't turn away. All is not dark, and eventually a glimmer of hope will light the path ahead.

Monday, February 11, 2013

HARD LESSONS: an introduction

I spent most of the year 2009 looking for a diagnosis and treatment for my chronic pain. I sought help from a primary care physician, nurse practitioner, chiropractor, orthopedic surgeon, rheumatologist, pain specialist, physical therapist, massage therapist, acupuncturist and psychotherapist, many of whom seemed to feel that my experience of pain was typical of “middle aged women with emotional problems.” In December 2009 I was referred to an internist whose earliest new patient appointment was in mid-January 2010. While waiting for that appointment, I kept a pain journal in which I rated my pain each day and tried to track what things aggravated it or alleviated it. I also used the journal to record my thoughts and feelings. Keeping a pain journal focused much of my attention on the one thing I wanted to forget: pain. Recording my thoughts and feelings about it wasn’t easy either, but at a time when no one else wanted to hear about it, being able to write it out and see it appear in text on my computer monitor seemed to validate my experience. 

It’s quite possible that stress played a part in my pain – not necessarily causing it, but aggravating it and eroding my ability to deal with it. After 11 months of unemployment, I had started a new job with an unpredictable schedule. My husband I run an unfunded, unofficial animal shelter, so we had the care of up to 21 cats and dogs at a time. I was watching Alzheimer’s disease eat my mother alive. Most of the time I felt very lonely, carrying all these burdens alone because my husband didn’t understand how I could look so good and feel so lousy. Every time I visited my mom in the nursing home, I longed for her to comfort me. When I suffered medical or other problems when I was growing up, she would often tell me, “I wish I could do the hurting for you.” But she was no longer able to even formulate that thought. I held her hand and listened to her tell me she was tired from taking her (long dead) mother shopping, or she would point at the ceiling to show me all the papers she must file that day, or ask me what had become of her car (she hadn’t drive for almost 20 years).

As I told more friends and acquaintances what was happening to me, I was able to get some comfort from talking with others who had similar experiences. Other pain patients are able to suffer with me, which is the essence of compassion (translated from Latin - "with passion" or "suffer with"). Other, well-intentioned people, simply don't get it. Pain, whatever its source (emotional, physical, spiritual), cannot be seen. Even the experts, doctors equipped with all the marvels of modern medical technology, cannot visualize it or measure it, so it's no wonder they're so inept at treating it. If you don't have a fever or an abnormal test reading, if no broken bone protrudes from your skin, if your shoes aren't filled with blood, you're likely to be labeled a whiner. Like the British monarchy, we're supposed to keep a stiff upper lip, stop whingeing and get on with it. 

Since my own physical pain has been dismissed by so many doctors in the past, I've wondered about the origins of stoicism. What is the purpose of it? Some strands of the ancient Greek stoic philosophy (which involved far more than just an indifference to pain) seem to woven into Christianity. From toddlerhood, I have accepted that Christ suffered and died on the cross for me, and that my own little aches and pains are insignificant compared to his great sacrifice. When my priest exhorts me to be a Christian ("little Christ"), does he mean that I too must suffer greatly in order to win a place in heaven? I have a hard time buying that notion these days. Even as an artist I've had trouble accepting the idea that I must suffer for my art - that if I don't starve or suffer for it, my output doesn't even qualify as art.
Nowadays I doubt that suffering will earn me salvation. Ceaseless pain clouds my vision of a benevolent heavenly father who loves and protects me no matter what. Instead of feeling like a beloved child of God, I feel like the butt of a cosmic joke. Or maybe it's the devil, taunting me, "You were a good girl. You believed, you strove, you behaved well and followed all the rules, but it's all a joke, and the joke's on you!" Sometimes my hands and feet feel as if they're being stabbed with a knife. No stigmata appear, and I'm pretty sure no one's going to deify me.

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