I’m completing the missing chapters of “Peace with Chronic Pain” and this is an excerpt from a work in progress. The agent wanted me to include my personal experience with pain, so this is from the chapter, “My Experiences, My Labels”
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****************************For 14 years I’ve lived with chronic pain, 24/7, every moment of every day pain. It began when I was 27, right in the middle of my fantastic and successful life as a Buddhist monk, computer consultant, writer, and happy homemaker. Doctors labeled my body issues with a long list of names like TMJ Dysfunction, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Myofascial Pain, Endometriosis, Chronic Ovarian Cysts, Interstitial Cystitis, and Lyme disease with co-infections like Babesia and Bartonella. There were gallstones spilling out of my gallbladder, but the stones and the gallbladder were removed with surgery. I celebrated the victory over vomiting, even though it took two years and a trip to the ER to find the cause. In a happy coincidence, the gallbladder surgery also fixed the Irritable Bowel Syndrome, but not before I learned where the bathroom is in every store in every neighborhood I’ve ever visited. Years later, the antibiotic treatment for Lyme disease and Toxoplasmosis cured me of my stomach acid and GERD. Again I celebrated – one less pill, whoo-hoo! The antibiotics also stopped the drunken loopyness that made me fall down at random moments (yea!); apparently my alcohol-free drunken moments were caused by the Toxoplasmosis. However, even after a full year of antibiotic treatment, the pain persists within my body. The constant pain and fatigue limit my activity and force me under the label “disabled” and onto the couch for frequent rest breaks.
I’ve eaten mountains of pills, gone on strict diet regimens, and seen every type of MD, DO, DC, PT, and alternative care practitioner known in America. I’ve consulted Tibetan doctors, Chinese medicine specialists, and those skilled in Ayurveda. I’ve worn mouth splints to relax my jaw and used special pain relieving creams and massage tools and heating packs in all sizes, shapes and scents. A selection of ice packs dominates a section of my freezer, and I always have lavender bubble bath on hand to soothe my hundred-plus trigger points. My friend even dragged me to a psychic healer who could only tell me he saw toxins in my body, but couldn’t tell me where they were from or offer a solution to remove them. This prompted yet another batch of experiments, to purify the cells of my body.
With every suggestion of a possible cure, or even a modicum of relief, I willingly boarded the roller coaster of hope and despair those of us with pain know all too well. We eagerly hear about the details as the cart goes click-click-click up the hill. We begin the treatment as we whoosh down the hill, filled with excitement and fear. Then the first corner nearly takes us out…the treatment doesn’t seem to be doing anything. But, wait, maybe I feel a little stronger, a little more energetic – we go up another hill, filling with hope. We rush down and around again and again, as the despair sets in and we realize the treatment didn’t work the way we expected and we are suddenly back to where we started.
Even though I know that ride well, I still get tempted to hop on for a spin. I do it because there have been things that help some, and a little bit of relief is often worth the risk. Now that I’m older and have more experience, I look carefully before jumping on. I check to see what else is going on in my life before I decide to begin the next experiment. I’ve learned I need to choose my projects with discretion, whether they are body, writing, or teaching related. We never know exactly how the body will react to anything we put it through, and sometimes we wind up worse off than before. So I’ve learned to explore my options slowly, with eyes wide open.
Through all of these experiences and all of these labels, the one I allow myself to hold onto in my mind is Buddhist monk. My spiritual practice is my saving grace. At the end of the day, even when I get completely spun out from whatever particular roller coaster I find myself riding, I remember why I’m here in this body. In the light of spiritual growth, a malfunctioning body doesn’t matter so much, and can even be a blessing. As I’ve often said to my students, it is only when we decide we have suffered enough, we finally devote ourselves to the spiritual path. My days begin and end with meditation, and I strive to be present and mindful of all the moments in between. This body, with all of its complaints, is one of my greatest teachers. It forces me into the present with its screaming pain. The fatigue makes me sit when I want to run away. This body has taught me respect, kindness, and patience. Even though I still whine on occasion, for all of that, I am grateful.
Probably the toughest thing to explain is the realization that me and my body can have very different experiences at the same time. Yes, the body is in severe pain. No, I’m not bummed out about it; I’m actually feeling the ecstasy of this moment. Yes, I would like my body to work normally. Yes, I miss hiking for ten miles in the mountains and practicing Aikido and the feel of my muscles working. Now in my muscles, I just feel the burning and aching and the random stabbing, not to mention how they don’t always cooperate when I have plans for them. But that’s not enough to destroy my peace of mind because I know with every fiber of my being I am not this fragile body. This body is my vehicle, and I am responsible for taking care of it to the best of my ability. This vehicle, which allows me to have experiences in this crazy, wonderful, human world of all possible mind states, is precious. And even with its disability, this precious body is able to take me where I need to go to grow and share the light of Enlightenment in this world.