Paul and the Just-Right Challenge

Rancho Los Amigos Hospital Ward 904

Tuesday, May 5, 1970

Paul was big for a 15-year-old and protested with loud profanity as Mrs. G. and I pushed him strapped to his wheelchair out of Ward 904, the pediatric wing for rehabilitation of children with brain injuries, to the Music Room for our first therapy session. His abusive language upset most of the nurses and doctors, but I had grown up on the streets and playgrounds of South Central Los Angeles and Mrs. G. was from another planet.

A few weeks before, Paul had been stabbed in his head during a gang fight. The knife had penetrated just above his hairline on the right side of his skull and into his brain. He had lost many of his normal inhibitions as well as the ability to use much of the left side of his body. In the general hospital he had been kept in “soft restraints” since regaining consciousness because he was combative and threatened the staff. However, in the pediatrics pavilion at Rancho Los Amigos Hospital restraints were not acceptable to Mrs. G. and Dr. Elizabeth Eberle, the head nurse and pediatrician for teenagers with brain injuries. Children, even those who were violent, were guided and encouraged, rather than controlled. Paul challenged those values.

Paul had come in by ambulance from the general hospital the day before, accompanied by his mother and grandmother who obviously loved him in spite of his unceasing verbal abuse and threatening gestures. Anticipating the fear and distaste that Paul’s behavior would create in the otherwise caring staff, they had pleaded with us to give their boy a chance, but after praying at his bedside while he fell asleep the night before, they had gone home sad and discouraged.

Fast-forward 27 years. I am testifying in the United States Congress about work rehabilitation. “Paul went on to live the American dream,” I tell the assembled Representatives. “He got a job, married and became a father, and lives with his family in his own home in Southern California.”

But that morning when I was left alone with Paul in the Music Room, I was just beginning to tap into the rehabilitative potential of Paul’s brain and, though my efforts were clumsy, start us both on journeys that continue today.

As Mrs. G. left Paul and me in the Music Room, I had only a vague idea of what to do. Basically, my goal was to get Paul to stop his cursing so that he would not disrupt the staff and the five other teenage boys with brain injuries who shared his room. We only had a few days to change his behavior because the other patients had the right to not be abused or frightened by what appeared to be a crazed and dangerous hoodlum.

The Music Room was soundproof, but I had no doubt that Paul’s abusive shouting was reverberating down Rancho’s white tile halls as I sat down and turned his wheelchair to face me. As I always do when it is possible to be struck, I took off my eyeglasses and spoke quietly to Paul, who continued his shouted curses. I tried to soothe and cajole and calm him, but my words had absolutely no effect. Fortunately, the Music Room was well-lighted and I noticed the telltale nicotine stain on the index finger of Paul’s still-useful right hand. I said quietly, “Would you like a smoke?”

Bam! Paul looked at me and stopped shouting. “Whattt?” he slurred. “Whudd you say?” I repeated myself and now I had his attention. “You can earn a smoke if you do what I say,” I said, and laid out three piles of parts on the table, picked up and put a washer on a small bolt, and threaded a nut onto the bolt. There were enough parts for 30 assemblies. “Paul, each one of these you assemble earns you a penny, and you can buy a smoke for 30 cents.”

Bam! Paul brushed his right arm across the table and scattered parts all over and started shouting again, even louder than before, now with the violent shaking of genuine anger. He reached up and yanked his helmet off his head and threw it at me.

I ducked, collected my wits, and picked Paul’s helmet up off the floor and held it in my lap as I continued to talk quietly to him. “Paul, you know cigarettes aren’t allowed in the hospital.”

More violent and belligerent cursing.

“Well, Paul, I can get a cigarette in here this evening if you want, but they cost 30 cents. You can earn 30 cents today by putting these together.”

Quiet. Wheels obviously turning. One LOUD exclamatory curse!

Quiet once again. “O-O-K-K-K,” he stuttered and settled back into his wheelchair. “Good,” I said. “Now help me pick up these parts. We only have enough for 30 and you need 30 cents to buy a cigarette.”

We spent the next three hours putting together those simple parts and counting out one penny for each one. With one tremulous hand, Paul struggled to complete the task, with help from me at first, and less as we went along. Paul was painfully clumsy and easily frustrated and stopped several times. But he always came back to the task and improved as he went along. He completed the 30 sets just before we broke for lunch.

I told Paul, “I have something that’s more difficult — it has 5 parts, but it pays three cents for each set. Would you like to try that tomorrow? If you can handle it, you might be able to buy more smokes.”

I can still remember his first smile and grunted chuckle 40 years later.

Vert Mooney, MD

Vert Mooney died yesterday afternoon on his way home from work, apparently from a heart attack or stroke.  He was a pioneer in so many aspects of rehabilitation and one of the world’s foremost spine surgeons, a wonderful husband and father, and a friend and mentor whose absence will be deeply felt.

I woke up in the wee hours this morning feeling his absence.  His voice is still fresh for me, “Onward and upward, man!”

I’m certain that there are many aspects of Vert I will miss that will come to mind in the coming days, but the very first that I’ve noticed is how much I value his firm graciousness and his insistence on respect for all opinions.  As a pioneer in medicine, it wasn’t uncommon for him to be attacked by vested interests and by people whose cages he enjoyed rattling.  I recall a scientific meeting many years ago in which we presented several research papers to about 500 orthopedic surgeons and then took questions.  Our work was obviously controversial because we had scientifically demonstrated the efficacy of alternatives to expensive surgical procedures; not exactly what spine surgeons wanted to hear.  One of our group was so concerned about the reception of his paper that he actually fainted at the lectern and had to be revived.  After we presented, Vert was the moderator, taking questions from the floor.  Immediately he was hit with angry “questions” that were really diatribes by angry red-faced surgeons who were used to telling other people what was what.  Vert, with deep roots in the scientific and academic communities and as a founder and past president of all of the major pertinent professional associations simply responded with, “Thank you for your question” and asked for the microphone to be passed.  He was polite and not dismissive, allowing people to have their say, trusting that our findings, based on good research, would stand on its own, which was true.  As the diatribes diminished and actual questions began to surface, he encouraged all of us, but most especially the junior members of our research group to respond, which, with Vert having our back, we were able to do.  That was a very special moment for me and provided a template for how to be a mentor and senior scientist.  Being a pioneer is fun, but it is often difficult and the absolute best way to defuse difficult situations is with grace.  Vert was firm, not backing away from a fight, but always treating everyone in the conversation with grace and respect.

Today, I send prayers to Vert’s family and many friends, for our shared loss and thanking God for his gift of Vert’s presence.  Millions have benefited from his work, many of us directly, and the world is so much better because he led and inspired us.

SMART for Chronic Disabling Pain

The only scientifically validated strategy to help patients handle chronic pain without strong analgesic medication or surgery involves a cognitive behavioral counseling approach that focuses on developing strategies for negotiating with the pain.  I call this “Symptom Management and Rehabilitation Training” (SMART).

 At first, most patients who are experiencing chronic disabling pain are unable to imagine that anything but medicine or surgery can handle their pain and that they cannot become an agent of change where their pain is concerned, but that some medicine expert is necessary.  Well, I am an expert and I can tell you that you need to help yourself.  If we can get you to accept that you are able to participate in your pain management by being intentional about what you think, we can probably help you handle your pain! 

 There is strong scientific evidence for the relationship between how pain is experienced and how a patient thinks and handles stress.  There is a direct relationship between mind and body that we can take advantage of; what a patient thinks is directly related to how they experience pain. 

 The first question to ask a patient with severe chronic disabling pain, is, “What makes it worse?”  Listen carefully for the response that indicates that personal agency is lacking.  Ask yourself, “Is the patient in charge or is something else in charge?”  If the patient responds, “nothing, it’s always as bad as it can be”, you don’t have an opening for change because the patient is closed off to the possibility of personal agency.  Similarly, if the patient responds, “my medicine is the only thing that helps”, the patient has identified something over which they don’t have complete control.  This response greatly limits the possibilities of developing an attitude of personal agency, but does not close it off entirely.  Better responses to the question include any degree of activity-relatedness.  That is, if the patient says, “whenever I stand more than 15 minutes or walk more than 10 minutes on a concrete floor, or climb two flights of stairs, my pain gets much worse”, the stage has been set for teaching symptom negotiation.

 Symptom negotiation is just like it sounds.  SMART helps the patient learn to negotiate with their symptoms, neither giving in to them nor ignoring them.  The analogy I like to provide my clients is that of the Olympic champions in long-distance running.  Whenever Joan Benoit Samuelson started a race, she monitored her body symptoms over the first few miles.  A tight calf muscle or a pulse that was above the expected range immediately led to a change in her race tactics.  Her stride was lengthened or she would take on more water or change the depth of her breathing; anything to bring her body back to dependable symptoms.  Because she was the first female Olympic Marathon champion, she knew that she could not run her race optimally without dependable symptoms and she knew ahead of time that winning the race would require that she negotiate with her symptoms.

 The real champions do not ignore or avoid symptoms, they negotiate with them.  They push themselves hard to enough so that they become symptomatic; if not they’d never win a race.  But they don’t let the symptoms win; they do everything they can to adjust the symptoms, to negotiate with them.

 In SMART, symptom negotiation is easy to introduce, but can be somewhat difficult to integrate into everyday activities.  If the patient is involved in a therapy program that is dependably consistent day today, symptom negotiation can be much more easily learned.  There are two great examples of this.  The first is the work of Selvester and Rice and Ice and the early pioneers of cardiac rehabilitation.  The second is the work of Mooney and MacKenzie and Mayer and Gatchel and the early pioneers of spinal pain rehabilitation. 

 In the cardiac arena, helping a patient learn to use (and trust) angina pain as a “safety signal” is a very effective strategy to avoid “cardiac cripples”, patients who become so afraid of their anginal pain that they retire to the couch and gradually become irretrievably disabled.  Working with Dr. Ron Selvester and Dr. Harry Rice and physical therapist Randy Ice at Rancho Los Amigos Hospital, part of the University of Southern California, we taught patients that level 1 angina pain meant that their pain was just noticeable and nothing needed to be done.  At level 2, the patient was required to change the way they were working or walking or breathing.  Level 3 angina required the patient to do all this and to also use sub-lingual nitroglycerin.  At level 4, the patient was required to immediately ask for emergency help.  The psychological impact of this helped the patient to develop an attitude of personal agency; to control their symptoms, rather than to have their symptoms control them.  Imagine!  We were teaching people to pay attention to the symptom that told them their heart wasn’t getting enough blood!  What had previously been frightening became a useful symptom that made pain much more manageable.  Instead of being afraid of angina, the patient looked for it and accepted it at a particular level of activity and then adjusted their response according to the symptoms.  They learned to negotiate with their symptoms!  That’s SMART.

In the spinal pain arena, helping the patient to learn that most pain of this type has a dependable source and a relationship to posture and activity facilitated the development of effective alternatives to surgery for the control of disabling spinal pain.  Working with Dr. Vert Mooney at Rancho-USC, we developed pain diagrams and rating scales and invented the work hardening program, all of which were found to be very useful in educating patients about symptom negotiation.  Dr. Mooney brought physiotherapist Robin MacKenzie from New Zealand to educate Rancho staff and, eventually all spinal pain professionals in North America on the benefits of diagnosing and treating spinal pain from a mechanical perspective.  He would put a patient into postures carefully so that the pain was elicited, and then work with the patient to develop alternative postures and movement patterns. 

 The psychological impact of this perspective also is very positive, helping the patient to develop an attitude of personal agency based on posture and their participation in conditioning activities.  Dr. Mooney took these strategies to the University of Texas where he mentored Tom Mayer and Robert Gatchel, who developed the PRIDE program, where they invented work conditioning and the concept of the industrial athlete and continue to be the world’s foremost experts with chronic disabling spinal pain, demonstrating scientifically – validated success as an alternative to spinal surgery.

 What is the common thread among these approaches?  The patient must accept ongoing responsibility for pain.  In order to manage pain, the patient must develop an attitude of personal agency.  You can wish away pain or hope that you can be pain-free some day if you get the right medicine or surgery, but if you really do have chronic disabling pain, that is all in your past and you need to move on and get back to living by being intentional about the messages you give yourself.  How you thinks affects how you feel.  SMART focuses on helping you become more aware of these messages and how to tweak them so that you negotiate with your symptoms and can finish the race like a champion.

 Here is the caveat: When the pain patient has cognitive or emotional limitations due to a brain injury or serious psychiatric disorder, SMART is much more difficult.  Patients who have a combination of chronic pain and either brain injury or stroke are extremely difficult to work with due to their inability to develop an attitude of personal agency.  Similarly, patients who are severely depressed, who have problems with maintaining contact with reality, or who are intellectually impaired and have a difficult time with learning are less likely to be successful in developing personal pain control strategies.  Although some of these patients can be helped, the rehabilitation process is quite prolonged and the outcome is much less likely to be successful.

 On the other hand, patients who easily develop an attitude of personal responsibility are often quite easy to work with.  Many athletes, actors, dancers, police officers and firefighters, politicians, military service officers and armed forces personnel are quite successful in developing strategies for handling chronic pain.  In each of these occupational areas, these people experience pain, discomfort, and illness that they must push through no matter what is expected.  Each person entering the field is mentored in that regard.  For athletes and dancers, the mentoring often begins in childhood so that, if the person abandons a career in athletics or dance in adolescence or adulthood, the early experience puts them in an advantageous position with regard to chronic pain that is similar to adults who come from these careers.  It is always helpful to ask about a patient’s occupational background as we begin to address chronic pain.

 Specific SMART strategies for dealing with chronic pain will be presented in future blogs, given sufficient interest from readers.  In the meantime, look at Personal Prayer Relaxation and the Happy Hippocampus; both are helpful for what may ail you.