17 Jan Hoping for Healing

a note card found on the floor at the airport

There are times that I read something that’s of interest to me that don’t really seem to connect until much later.  Other times, I’ll read just a sentence and it will hit me like lightning, connecting back to something that I have read, sparking a new understanding of both texts. Tonight, when my daughter asked me to help her find a book to read, I happened to also find Jerome Groopman’s “The Anatomy of Hope,” which I had picked up at the thrift shop last month.  I blazed through it, finding connections with many other things that I’ve come across in the last couple of days. I have been aware of Dr. Groopman’s work in the New Yorker, but hadn’t seen how connected his thoughts might be to “All the Rage”.

Most of what I have been reading recently has focused on how our relationship to the world around us has a powerful effect on our health. Dr. Groopman’s book focuses on the balanced place between irrational optimism and hopeless despair.  As I have been very focused on the idea of balance, his thoughts hit a chord.  However, the big connection came in chapter 7, where Groopman details his personal experience of struggling with back pain for 15 years before finally affecting a cure that involved retraining his brain and his muscles.  Groopman doesn’t focus on the idea of emotional causation of his pain in the way that Dr. Sarno discusses, but he does zero in on how he came to see that the fear of pain kept him stuck.

I understand how this works because I have seen it in action.  About a year ago, while trying to carry very heavy bags up stairs in the subway, my knee gave out.  I took a deep breath and made it up the stairs, but each step was scary and tenuous.  After that point, I had trouble walking up all stairs, even when I didn’t have heavy bags.  It was like all of a sudden, my knees didn’t work correctly. Even though I am very aware of how mind body pain works, I failed to fully make the connection to this pain.  On some level I thought to myself that it was just part of getting old. It wasn’t even so much that my knees hurt, but instead that they just couldn’t support my weight.

However, a couple of months ago, after I had started to run again, I realized that my knees were fine when I ran and that it didn’t make sense that they would buckle so quickly when going up stairs.  When I reached the next hill I ran it hard, lifting my knees high, and I talked to my brain (yelled at it actually), telling it that my knees were fine and that I didn’t need it to protect me from possible injury.  My knees were fine and I flew up the hill without problem.  The next time I walked up the stairs, I had no trouble with them either, even though I had had to pull myself up the railing the week before.  It’s become clear to me that sometimes our brains cause us pain because they are trying to warn us about something that we unconsciously believe will hurt us.  According to Dr. Groopman’s own doctor, this is a learned response and it can be unlearned.

Dr. Rainville planted the MRI scan of my spine on a lighted box on the wall and systematically inspected the film, vertebra by vertebra. Seemingly satisfied that he had reviewed all the relevant data, he turned and stood before me.

“You are worshiping the volcano god of pain,” he declared. ….. “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… travel ..Just keep me from pain…’ I believe you can be freed from your pain. I believe you can rebuild yourself and do much, much more.”

I studied James Rainville’s face. He had the burning eyes of a zealot, and he read my thoughts.

“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 the door and glimpse a different kind of life.” He paused and them spoke with gravity. “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 right now. I’m right.”

…. My heart was racing as I exited the hospital. It was strange: There was a perverse comfort in inertia. As a physician I had learned the need for hope. Yet I had completely abandoned it.

It took Groopman a few days before he came to terms with the fact that he had little to lose and a lot to gain. It wasn’t easy, but through a slowly increasing regime of stretching and exercise he regained his movement and his strength. It worked for him. It also worked for me. Again, while he didn’t focus directly on the emotional cause of his pain, he did change the way he emotionally responded to it. Dr. Rainville frames the situation differently than Dr. Sarno, but in many ways the physical process is the same; the unconscious mind, seeking to protect the person causes pain to stop damage. In Rainville’s reading, the subconscious is trying to protect us from the perceived threat of tissue damage. Dr. Sarno posits that the unconscious is trying to protect us from damaging feelings or thoughts.

All of his training to be doctor made it very difficult for Groopman to see beyond a direct physical cause of his pain.  As the past 100 odd years medical practice has increasingly focused on a physical and “scientific” approach to medicine, the acknowledgement of how our emotions interact with our well being has been crowded out.  Groopman’s own exploration into doctor patient communication and his patient’s emotional relationship to illness made it possible for him to see the importance of hope. Had he not been so intent on understanding the role of hope in the healing process, it’s very unlikely that he would have been willing to trust this doctor, who preached like a “zealot” ideas that ran so counter to his “guild”.

After his own experience of healing, Groopman looked further into the connection between healing and the mind.  His chapter on the placebo effect illuminated the way in which cultural influences shape our view of the world.  All of the studies on placebo that he cites involved extreme ruses designed to make it seem like a doctor was administering a potent cure.  All of the cited studies indicate that the placebo effect is very powerful.  I like to think of the placebo effect as illustrating the power of belief. Instead of positing a placebo as a “fake” result, I see it as a real one that is powered by this belief.  Without belief, the body has less ability to marshal the resources necessary for healing. However, the way Groopman discusses it – the way it is typically discussed in medicine – frames it as trickery or a sham.  I wonder if this has to do with the how our society, and instinct, steer us towards placing our faith in others, rather than ourselves.  We trust the doctor in the white coat, or the priest in the grand costume, or the rabbi, or the imam, more than we trust our bodies own ability to heal.  We outsource our faith to others.  Once we realize this, perhaps it’s possible to activate the belief without affirmation from people more powerful than us.

When I read Groopman’s book, I was looking at it through the frame of Margaret Heffernan’s book “Willful Blindness”.  I was introduced to it last week by Gary, a former patient of Dr. Sarno, who had reached out to me after seeing a Huffington Post article about Dr. Sarno, and our film “All The Rage”. He was one of the first people to leave a comment asking them to change the horrible headline: “This Doctor Believes Your Back Pain Is All In Your Head”.  Just before I got his email, I had been struggling to articulate some of the more esoteric ideas related to our film. While the story focuses on the work of Dr. Sarno and his embrace of principles related to mind body medicine, the underlying ideas are broader. The goal is not simply to focus on Dr. Sarno, or pain, or medicine, or science, but instead to frame these ideas in a more complex cultural context that essentially asks the audience to question all assumptions. The issue that we had been discussing was how to effectively communicate simple and obvious ideas that people don’t want to hear. In my life, and work, I have found that not only do people resist ideas that run counter to their cultural framing, but they also resist – and often vilify – the messenger of such ideas.  As such, this is a fraught path to tread upon.

I read the first few pages of “Willful Blindness” online and immediately went out to get it from the library. Like Jonah Lerher’s article, “Why Science Is Failing Us”, the book articulated ideas that I had been working with,  and struggling with.  Reading her book made me feel a lot less alone. The central thesis is that our inclusion within a group will often create an environment that makes it difficult for us to see things that others, not enmeshed within that group, would likely become aware of right away.  The book weaves together data and stories to make it clear, both how and why, we often become blind to realities that run counter to the culture of the group we are in.  This effect occurs within corporations, families, armies, schools, governments, fashion, high school, art, politics, business, law, and every other kind of group one can think of.  It skillfully illustrates that the effects of being influenced by a group cloud our cognitive abilities to see counter-factual details. Further, the various stories make it clear that as we become part of groups, we also fall into different positions within hierarchies. Where we stand in relation to others has a powerful effect on how we see ourselves.

Last spring, while showing Who Took Johnny (our film about Noreen Gosch’s 30 year search for justice) at the Maryland Film Festival, we had lunch with an old family friend, Justin, an assistant professor at Johns Hopkins School of Public Health. Yesterday a story on NPR detailed one of his lectures about how science grudgingly began to gain ground in the realm of medicine in the 19th century. The story focused on a doctor Semmelweis who used the scientific method to discover the import of hand washing.  The story made it clear that while his discovery immediately began to save lives, he couldn’t get doctors to continue the process.  As the article states:

For one thing, doctors were upset because Semmelweis’ hypothesis made it look like they were the ones giving childbed fever to the women.

And Semmelweis was not very tactful. He publicly berated people who disagreed with him and made some influential enemies.

Eventually the doctors gave up the chlorine hand-washing, and Semmelweis — he lost his job.

Justin’s lecture is all about how science eventually won the day and pathogens were discovered, ushering in the disease model of medicine.  Washing hands saved countless lives, but it took years for people to accept what Semmelweis had discovered, because accepting his ideas meant that they had to admit that they had been wrong. Over the last 100 years, the increasingly scientific approach to medicine has saved millions of lives through hard-won interventions like vaccines and antibiotics.  However, this intense focus on the disease model of medicine has also created a blind spot in relation to how powerfully our emotions affect health. Further it also clouds the ways in which focusing purely on the disease model of medicine can have many negative outcomes. While I appreciate the value of science, I find that the way in which some people who embrace the scientific method as if it were a religion, tend to reject anything that has not been proven using the scientific method and accept without much question everything that “has been proven”. Clearly it’s not possible for every scientist to read every study, which is why there are systems in place to make sure that each paper is vetted by other scientists. As the book “The Half-life of Science” points out, this process leads to 25% of all scientific fact to be discredited every 25 years. As such, it seems that even those things that science has been proven should be approached with some openness.

At our lunch, we got into a long discussion and I expressed my frustration with how these problems with medicine and healing weren’t being addressed.  Justin deals with infectious diseases, which is one area in which science has made amazing inroads. However, even in this realm, science isn’t always 100% right. For example, bacteria has become wildly more resistant to antibiotics than anyone imagined when they were introduced. As I’ve often written about, I had a MRSA infection that was severe. As such, I was affected by antibiotic over-use and the beneficiary of antibiotics at the same time. Further, I have a strong belief that un-processed grief (my wife had recently had a miscarriage at 3 months) was a contributing factor to why I developed MRSA and my wife and child did not (I had a half dozen infections that leaked fluid. I was literally oozing this highly resistant bacteria). For people immersed in the world of scientific data, the connection I make to my body’s response to the the MRSA and my un-dealt with grief, would likely be dismissed as “woo“. If there’s no clear data to support it, they’re not buying it.

However, there is a lot of data that links the repression of our emotions to stress and to the fact that stress makes us more susceptible to illness. Gabor Mate refers to this as the Bermuda Triangle of medicine.  The studies are done, but they are largely ignored because it is difficult to incorporate this awareness into current medical practice and the teaching the import of emotions simply isn’t a part of medical training.

One of the more stressful things for people is being forcibly pushed to the outside of a group.  This can take the form of bullying, or lack of acceptance and respect within one’s field.  For the doctor in Justin’s story, this ostracism proved fatal. The NPR story continues,

Over the years, Semmelweis got angrier and eventually even strange. There’s been speculation he developed a mental condition brought on by possibly syphilis or even Alzheimer’s. And in 1865, when he was only 47 years old, Ignaz Semmelweis was committed to a mental asylum.

The sad end to the story is that Semmelweis was probably beaten in the asylum and eventually died of sepsis, a potentially fatal complication of an infection in the bloodstream — basically, it’s the same disease Semmelweis fought so hard to prevent in those women who died from childbed fever.

Looking at this story through the frame of the mind body perspective, the connection of his symptoms to his rage is clear.  Semmelweis developed early onset Alzheimer’s, which is an auto-immune disease that Dr. Mate believes is related to the repression of emotions.  This is not to say that his unresolved anger and frustration was a singular cause like a pathogen, but instead that the level of stress he experienced very likely created the environment for the illness to appear.  Dr. Mate points out that illness is a complex process that involves environmental, emotional, and genetic factors.  The current medical model focuses on the environmental (toxins, pathogens, diet) and the genetic, but pays almost no attention to how our emotions affect our health.

One of the more difficult hurdles we face as filmmakers when trying to discuss the import of the mind body connection is that many people are so wedded to the disease model that they immediately peg us as irrational science-deniers. “So you’re trying to tell me that all pain and sickness is because of emotions?” they ask.  The short answer is a resounding “No.” However, I would argue that all illness is “related” to our emotions, and the way that our minds process information. I argue this based on copious scientific evidence. When we look at illness through a mind body perspective, rather than just a body one, it becomes quite clear that many factors determine whether or not we will become ill. Toxins and pathogens are undeniably a part of this process.  However, if we look at only one causal factor, then we aren’t going to see the whole picture, and we’ll limit our ability to affect cures. If we look at health care as a three legged stool with environmental factors, genetic factors, and emotional factors making up each leg, then it’s clear to see that all three legs are needed to make the most balanced perspective. Balance of perspective is as important as the balance of power that we try to maintain within the US governmental system.

When Dr. Groopman first encountered Dr. Rainville, he saw him as a “zealot” because he was saying something with conviction that ran counter to what he and other doctors believed. However, Dr. Groopman was so indoctrinated into the disease model of medicine that he must have appeared, to Dr. Rainville, to be equally as crazed with belief. In the end, they were both right to some degree. The disease model makes a great deal of sense and has helped to devlop tools that have saved countless lives. In general, Dr. Rainville was probably more in agreement about medicine than Dr. Groopman realized. However, like a real scientist (and like Dr. Sarno) Dr. Rainville had looked at the data on back care and come to realize that it was a mess (Dr. Groopman wrote a subsequent article for the New Yorker that detailed this mess). However, just as Dr. Semmelweis (and Dr. Sarno) faced opposition to his ideas because they challenged everything those in power were doing, So did Dr. Rainville. However, the strength of his conviction helped him to bring hope, and healing, to his patients just as Dr. Sarno’s strength of conviction has done for his patients.

addendum-
When my back went out three years ago I ended up with a drop foot situation. My left big toe wouldn’t work at all and a section of my calf seemed to be moribund as well. I did some exercises to strengthen them and they improved, but my toe still has no strength. I was encouraged by Groopman’s book to try to reclaim my big toe and calf once and for all. So I really pushed them the last couple of days both stretching and doing targeted exercise in addition to running and other exercises. This morning I woke up and my back was stiff- and threatening to “go out”. I took it in stride partly because I had really pushed myself with the planking the last two days, and partly because I have been dealing with some stress. The stiffness stayed with me all day as I did errands, like walking a friend’s dog. This afternoon I decided to go for a run. I knew from both my experience with Dr. Sarno – and the Groopman book- that I would be fine. I won’t lie. It hurt a lot at first. When your lower back is frozen up it’s really hard. I kept telling myself that the pain was a warning and that it wouldn’t hurt me. Very slowly it started to relax a little and I used that to talk to my brain, “I’m fine, this run won’t hurt me, I’m strong, there’s nothing wrong with my back, there’s nothing to fear, nothing to fear but fear, fear is the problem…etc.” About a half mile in the pain was still there, but my gait was more normal. My calf started to really ache. I acknowledged it and told it that I didn’t need its help. I thought about how insane it is that most doctors don’t consider the mind body connection in relation to muscles, ignoring the fact that the muscle does not move without a command from the mind. How nuts is that? We know that the mind controls every muscle, and that without the perception of pain, there is no pain. How then, would pain not be a mind body, subjective issue? Then I thought about the stressful things that the pain was probably there to distract me from.

In any case, the longer I ran the more comfortable it became. Still though, my back was stiff and my calf pulled tighter. By the end of a 2 and half mile run I was moving pretty smoothly, but I was still stiff and in pain. However, it was a lot less pain than I felt at the start. I came home, took a shower, and started cooking dinner. It hurt, but I knew that I was right, and my brain was wrong.

– further addendum 😉

My back is still sore several days later- but improving each day. I have continued to exercise and not allow the pain to stop me. – I also wanted to add in a quote from David Shenk’s book about Alztheimers disease,”The Forgetting” that my friend sent me after reading this piece

“It was a variation on the recurring theme of outcast scientists. Why was Stanley Prusiner vilified for years over his unusual–but as it turned out, correct–idea about infectious prions? Why was Allen Roses denied grants for follow-up to his important ApoE discovery? Why was Ruth Itzhaki ignored in her pursuit of herpes simplex virus 1? Why was Meta Neumann ignored? Alois Alzheimer? Why does the culture of science seem so often to punish the most inventive?

“Science is ultimately a human endeavor. Its language is uniform, its methods are strict, but the questions posed and the analysis applied are as idiosyncratic as love affairs and operas and football games. There is, thus, an organic incongruity. Scientific discovery is, and always will be, an inherently clumsy matter as scientists attempt to fit the round peg of humanity into the square hole of objectivity.

“The most adventuresome of these scientists, pushing against the limits of comprehension, are inevitably bruised by the friction. They are threatening existing power structures and, perhaps more dangerously, jeopardizing people’s basic understanding of the world around them.”