25 Nov Julie’s Story.
On Nov 12th we started a kickstarter campaign to fund our film about mind body medicine. If you like this piece please consider clicking through to see more.
For a couple of years the working title of our film about Dr. John Sarno was “Story of Pain”. As we looked into the pain problem it felt very connected to the idea of the stories that we tell about ourselves. Our stories exist in relation to other people’s stories as well as our the larger cultural narrative that we exist in. We communicate to others, and to ourselves, with stories. “Story of Pain” seemed to hit at this connection in a powerful way.
However, at some point we realized that having the word pain in the title was problematic. Who wants to go see a film about pain? We spent a lot of time mulling over other possible titles and eventually landed on All The Rage because it worked on a lot of different levels. It seems almost positive, and as Dr. Sarno points out, rage is at the heart of the matter.
Still, the idea of storytelling, and the stories we tell, is central to this film. In scientific terms stories are anecdotal evidence; the opposite of un-biased data. However, this overlooks the underpinnings of the human psyche. We are stories, and our stories constantly shift and change. When we overlook how powerfully our stories affect us, we fail to see the whole picture. A couple of years ago we read “The Cure Within” by Anne Harrington which looks at the history of mind body medicine. In the book she points out that the way in which people act while hypnotized depends on their cultural context. Our stories create our expectations which affect our actions.
Other people’s stories often give us insight to our own less conscious motivations, as well as to the hidden frames that guide our thinking. Our friend Julie Cafritz met Dr. Sarno a long time ago, and he helped her to see the story of her pain. Hopefully hers will help you to see yours.
The following was written by writer, artist, and musician Julie Cafritz, who played a major role in American Underground music in the late 80’s through the 90’s.
In 1981, I was a typical high-achieving high school student, putting a lot of pressure on myself to do well-enough to get into the college of my father’s choice, when I was involved in a three car accident driving home from school on a very snowy day. By the time I got home, I had a splitting headache and decided to lie down. I went to sleep and by the time I woke up, I couldn’t move such was the pain in my neck. I was sent home from the ER with a neck brace and handful of painkillers. In the weeks that followed, I did a typical course of physical therapy, traction and neck exercises. But I got little to no relief. My neck was no longer in acute spasm but I had limited mobility and a constant dull pain punctuated by daily bouts of acute pain. I saw an orthopedist- had an x-ray and more traction. I was sent to an 82-year-old Russian medical masseuse who used all eighty pounds of herself to beat the shit out of me and plied me with bee pollen. After her, was Dr. Wu, and weeks of ineffective acupuncture appointments and a needle in my ear cartilage that I was to squeeze 6 times a day.
My next foray, was into the world of chiropractors who scared me with over-enthusiastic adjustments or underwhelmed me with useless gentle touch. No relief. A year or so later, I had a MRI that confirmed a “ruptured” C6/C7 disc. I was advised to have a neck operation. I demurred and continued to follow a regimen of anti-inflammatories, low-level muscle relaxants, massage, and physical therapy. None of them gave me much relief from pain. I was prescribed Xanax, an anti-anxiety drug, which had an off label use of relieving pain in back patients….hmmmm. I would love to say that a light bulb went off when a psych drug was being prescribed as an effective treatment for chronic pain sufferers, but it did not. I was very weary of GETTING ADDICTED TO PRESCRIPTION DRUGS. I took it at night and it knocked me out enough to get to sleep as opposed to actually solving my discomfort. During the day, I took massive amounts of aspirin, which was supposed to build up in your system and help. It did not. But it did fuck up my already anxious stomach. All of this was the backdrop to my junior and senior years.
When I went off to college, my pain went with me. I did get some relief for a couple of weeks during my first semester, when the pain of an emergency appendectomy (hmmm, definitely not stress-related) briefly eclipsed my neck pain but it didn’t last. I began to see a renowned orthopedic surgeon who said I probably needed a cervical fusion operation but he wanted me to do a six-month series of monthly epidural steroid shots. These hot shots into my spinal canal were not only painful but also carried a risk of temporary or permanent paralysis. When on my fifth visit, the patient ahead of me did indeed suffer paralysis; I said no fucking way was I going to continue. That dude just temporarily lost the use of his legs, I could get paralyzed from the neck down. No thank you! Operation, please.
So in the middle of my sophomore year, I dropped out ostensibly to have this much needed neck operation. I just coincidentally happened to be suffering a slight nervous breakdown, hmmmm. Never mind, back to that useless neck operation. I had been warned that it could take up to a year to heal completely from the operation so I was not to be discouraged by the immediate lack of results. And then this great surgeon, and he was good, the scar on the front of my neck was so elegant; he undermined his own operation by telling me that some people suffered arthritis above and below the fusion. In other words, “that source of pain that I just whisked away with my mighty surgeon hands, that gave you relief that you can’t feel yet, will be replaced by a more mysterious sporadic pain. Yay! This was all a way to hedge his bets, if I didn’t actually get the results I was seeking. You see he had to do that, because he was very honest prior to the operation about having only about a 50% success rate with cervical fusions. Now at this point, it should have occurred to me to say something smart, like, “Gee, Doc, if my herniated disc is the problem and you take it out, shouldn’t it not be a problem for me anymore?” Yeah, I wasn’t that smart. Nor were his other patients who came in for this operation. And most tragically, neither was he. Instead, like most doctors, he had to create an elaborate convoluted rationale to fit my irrational pain narrative. His story went something like, “Oh, it was the disc but now that fusion has put more pressure on the disc below and now it’s herniated too and that’s what’s causing the present pain down your left side, oops, I mean you said left side, right?” To my, “Well, sometimes it’s on the left but it’s mostly on the right, but yeah the left too, and, oh, down my left arm, and my right leg, sometimes.” What was he supposed to with that narrative? It didn’t make sense. So his answers didn’t either; you start to get some, “atypical, left to right” jive. And you nod your head and believe it. And when you nod your head, you neck hurts. Still.
So in 1989, suffering from terrible sciatica and that pesky, sporadic, “arthritic condition” in my neck, I walked into Dr. John Sarno’s office. My mother who had seen him, and whose back pain disappeared, had tried to get me to read his book. I think she gave me a new copy of “Mind Over Back Pain” every six months. I never read it. Finally, I stepped into Dr Sarno’s office, and here was this short, little man, with an angry sounding voice, an incredibly gentle but firm manner, and a seemingly endless reserve of patience. He sat through an even longer version of the story above. He looked at all my x-rays, MRI’s and medical records from the operation. Then he performed an exam: rolling spiky thingies up and down my arms and legs, hitting me with that little green reflex hammer and having me bend over and do other exercises so he could evaluate my range of motion and observe what made me wince in pain. Finally we sat down, or I kinda sat down, as that sciatica made it impossible for me to sit normally. And he began to talk and explain to me why all the reasons I had been given for my pain over the years, couldn’t possibly account for all the places my pain appeared. So it made sense that all the various treatments offered up over the past eight years, didn’t solve the problem. He explained to me that the actual cause of my pain was TMS, Tension Myosistis Syndrome. My body was causing a physical diversion from, and a manifestation of, my emotional state. The pain was real. The cause was rooted in stress and the suppression of emotions, specifically rage. I read the book. I attended two lectures and my chronic pain was gone. I’ll still get occasional flare-ups but then I recognize them for what they are, TMS, and they go away!
So why did I just walk you through all my various unsuccessful treatments in excruciating detail and not just skip to the cure instead? Because right now, you are sitting in a chiropractor’s office, or shelling out $26 bucks for some bee pollen or guzzling nsaids or running to your PT appointment or even considering going under the knife for your pain. You are spending endless amounts of time and money chasing a cure for your pain. Stop! Watch this trailer. Read the book. Join me, Brothers and Sisters, in the fight against the ignorance and arrogance of the Medical-Industrial Complex and lend your support to getting this documentary finished by giving what you can to this Kickstarter campaign for All the Rage!