Speech -AAPM
Las Vegas -2007
I would like to thank the American Academy of Pain Management for this honor. If I am to be honored in this way, for “doing what I can when I can”, then I believe everyone in the field of pain management should be also honored...for sticking with it. For not giving up on us. For following this dream, that one day we will be able to treat chronic pain. I know we are close to that dream, but I also know that it will take everyone in the pain industry to get behind the same belief, the same mission. I know all of you are there... because you are here. Taking the classes, gaining the knowledge, talking to colleagues, learning new ways of treatment.
Whenever you deal with something that requires a human's emotional involvement to win, you must become the coach who stands behind that athlete and teaches them to become winners. A thankless business and an uphill road. I've spent the last two years talking to people, patients and professionals, about the patient's view of chronic pain, a view I'm personally aware of, a tragedy I intimately understand and a triumph of spirit I'll never forget. I went through five years of that down side, falling victim to a system I had no knowledge or understanding of. I didn't even understand my role in the system. Through non-diagnosis, misdiagnosis, and a “behind the scenes” game in which I was the pawn, I saw pain take away everything I had worked 32 years to gain. 32 uphill years! My work, my home, my family, my security, and eventually my spirit, ALL GONE! All sucked into the vacuum that chronic pain is. The true black hole of life.
For years I would wonder, “what's going on here, what can I do to stop this train from crashing into a wall?” There was no answer. Every time I tried a new treatment, or a different medication, or a diagnostic theory, I would gain only disappointment, a letdown I waited months for. A couple of years later I was fortunate enough to get to see my medical records, a five year journal of my doctor visits, which compared to my own pain diary, revealed some interesting things that only pushed me further into the self-pity, victimization and depression that comes with years of unending pain.
After locking up my house and saying goodbye to my two girls, a day I'll never forget, I left for Boston, a defeated, disabled, homeless person, a wanderer, lost in despair and sadness. Finally, with a diagnosis of two diseases that are permanent, deteriorating, and have no cures, suicide seemed the only logical step. Imagine that, I wait for years to get a diagnosis and instead of the elation and sense of the weight being listed, I just want to end it all. Like a survivor of a nuclear winter I gazed at my wasteland and didn't, and couldn't see a way to fix this. The medical system, which so cruelly cast me to the curb, seemed oblivious to this desperation. I lived with these bleak thoughts for months in between appointments that went nowhere, until one day, I met my coach.
A physical therapist who loved her work and took it very seriously, enough to set me straight. She educated me, she trained me, she instilled in me a fight attitude and inspired me to take up the challenges of fixing the wasteland. She gave me the spirit of accepting challenge, the athlete's outlook of overcoming adversities. All in one day! With a smack in the head and a stern attitude, she set me straight on many issues, then, like the good mentor she was, took away the blame, let me off the hook for my part in my own demise. In one 24-hour period, I was a changed man. In a very blurred way I could see the whole picture, the whole system, and my part in it.
I wasn't the pawn, I was the king!
Now, as a pupil and an athlete, I was learning and practicing new ways of moving my body, eating, breathing, posture, and especially, thinking. I elevated this to six days a week, eight hours a day, and I was starting to feel better. As odd as it was, walking was my answer. The more I walked, the better I felt, physically, emotionally, and spiritually. After a setback I realized my condition was worsening, but my inner self was gaining strength. It took me one month from a complete relapse to walking 7 miles a day. I was becoming indomitable!
I decided that a test of this newfound strength and knowledge was necessary because I felt I needed a destination that would include my therapy as a lifestyle. Since I had become used to being outdoors all the time, a straight 440 mile walk, from Boston to Washington, DC, seemed just right to fit the bill.
Originally, I was going to walk to Denver to be with my kids again, but the setback changed my mind to trying something safer. It was that walk, that uphill fight, that unbelievable experience, that allowed me to see this Pain Cycle more clearly. It allowed me to learn a different way of fighting, a passive, well paced battle. It showed me how the “weapons of healing” were meant to be used. I didn't learn this until months after this 23 day ordeal, while I was in Colorado, visiting my kids, healing from “the Walk for Healing!”
I had seriously learned the right way, the difference between damaging and non-damaging pain, the proper pace. I was now empowered to fight pain on its terms, using weapons I had known for years, words I listened to but could not hear, strength I always had inside me, but could not feel.
I could feel it now. I was ready to take another walk, a meandering journey, six times the first one!
The National Pain Foundation had joined me as a sponsor, and together we walked, me on foot, them as the structure, the administration, the support I desperately need. Along with my personal “eye in the sky”, Sue Austin, who was with me on the first walk, I went from town to town on the infamous “Mother Road”, Route 66, from Chicago to Los Angeles. I stopped at pain clinics, visiting with patients and doctors, administrators, therapists, and anyone else I could learn from. That's when I first heard the words “pain cycle”. “Pain cycle! Hmmm. A cycle, a circle, no, a path, no, 'leaving the path'...yes!” For hundreds and hundreds of miles, I listened and learned. I had hours upon hours of thinking time, to assimilate the knowledge, then miles upon miles to put it to the test. The walk was validation for what I was learning. It was undeniable. I would show up to a clinic event, after walking a couple of hundred miles, and people would react, “How do you do that? How do you live this epic adventure, in chronic pain, and yet look like you been on vacation! There is a peacefulness in your eyes! I want that!”
Yes there truly was. I had learned about the Pain Cycle, that pain was conquerable. It might never go away, but its power over us can be greatly diminished. Then, why, if my pain syndrome was still there, maybe even somewhat worse, was I able to accomplish this amazing feat? I was seeing the “Pain Cycle” through other's eyes, the pieces they each held to the puzzle of entering, and finally exiting, the curve. Now I was seeing “the Pain Amplifier”. Now I was understanding my role in this mess, how my inner peace had gone away, and was replaced with confusion, doubt and fear. How this negativity, which had become my way of life, was causing the sensation of pain to be greatly heightened, the volume eventually screaming in my ears. I now knew how to turn the volume down.
By the time I got to Phoenix, it was all making sense, and I was drawing the chart for people. Then the doctors were asking if I could do a separate talk with their staff members. By the time the Rte. 66 walk ended, after a year of trial and tribulation, I had finally learned the answer, and the answer was the question. Why is pain destroying my life? Because I let it. Simple answer, complex question, long journey. The journey towards inner peace.
It's one thing to learn new ways of thinking, new words to add to your vocabulary, it's another thing completely, to walk 3000 miles to prove it. Am I the only one who can do it? Not at all. Does it take an epiphany to find it? Not at all. Will it take a long time to reach this answer? As long as you need. It took me two years. I believe that with this knowledge, as patients and professionals together, we can show people the doorway to this journey, we can believe in them, everyone who suffers, for now we know why they suffer and how to really help them, let me explain...The