Everything I know about pain I learned by accident. In 2005, 14 miles from Wisdom Montana, I feel asleep at the wheel, over corrected and rolled violently down the barrow pit. Sitting in the wreckage of my car partially paralyzed from the neck down and gradually suffocating from two punctured lungs might seem like an unlikely way to get an education, but that’s how it was for me....
My accident landed me in the ICU in Butte with a broken neck, fighting for my life. After I had been taken off of the ventilator, I was finally able to ask one of my neurosurgeons a question that had been weighing on my heart. “What’s my prognosis doctor?”
He flipped through my chart and said, “Well, you’ll NEVER be normal!” That answer, while supremely accurate, was devastating. The next day, his partner, the neurosurgeon who actually did my surgery came in and I asked him the same question. His answer was different.
With bold confidence he smiled and looked me in the eye as he said, “You’re going to walk again.” At that moment I had a choice: I could be psychologically paralyzed by the discouraging voice, “You’ll never be normal,” or I could embrace the courage and hope of the second voice. Both statements were true, but the decision was mine.
Refusing to believe the discouraging voice I tackled the next two years of rehab and recovery with a vengeance. I relearned to sit up in a chair, to stand, to walk, to regain movement, and write my name. But even as I recovered my physical function, burning nerve pain from my neck down gradually took over my life.
The pain brought back that distant voice from the past, “You’ll never be normal!” Pain has a way of getting our attention, and it got my attention fully! I measured it on a scale of 1-10, I fought for a solution, an answer, a cure. But the more I focused on my pain, the worse it got.
Pain expert, Dr. Michael Moskowitz in his book, “Neuroplasticity: Changing the Brain in Pain” uses this graphic to illustrate the regions of the brain that experience pain. When a person experiences acute pain, these key regions of the brain are activated.
But as acute pain is experienced and focused upon it becomes memorized, more brain cells are recruited to the experience and pain amplifies and takes on a life of its own. Like a constant screaming siren that doesn’t go off, chronic pain is LOUD, and hard to ignore.
An old neurological adage says, “What fires together wires together.” What we focus on, we empower and enlarge. Bit by bit, day by day, the brain builds connections that define what we know, and how we feel. In my experience, my brain defined my pain and it was excruciating.
I’m not saying it’s all in my head, my pain is real, it has a real cause; a fluid filled cyst called a syrinx at the level of my injury. But the fact is that pain is an experience of the brain. I discovered this by learning about phantom limb pain.
How do you explain pain that is experienced in a limb that’s not even there? Many answers have been offered, but today’s best science has found that while the limb may be missing, the portion of the brain dedicated to that limb still exists, and if the brain says the missing limb hurts, then it hurts!
Dr Ramachandran developed a mirror box that tricked the brain into thinking the missing limb is actually there, complete, healthy and whole. This is me using the mirror box. When I see my paralyzed hand as if it is working, my pain goes away.
My accidental discovery of this fact led me to a powerful realization: How I see myself could completely transform my experience of pain. Seeing myself as whole and complete I could unlearn pain by focusing not on what is wrong, but on what is right. This was my first step in taking courage by the hand and walking into a whole new life.
But what can you focus on when you have burning nerve pain from the neck down? You focus on the neck up. You focus on what is good, what works, and what is going right. And so that’s what I did. Every time the pain started to scream, I deliberately turned my focus toward healthy tissue, and healthy thoughts, the positive, not the negative.
And it worked. My overall experience of pain decreased, I felt like I was getting my life back. I started doing the things my doctor told me would help me manage my pain; exercise, relaxation, sleep, and began cutting back my pain medications. I was beginning to find my new normal.
But a woman I had met at a pain clinic wasn’t doing as well. She couldn’t see past the pain, she needed someone to walk beside her, to do for her what Dr. Sorini did for me, to say to her “You’ll walk again.” So, I became her coach and she got her life back too.
I call this “Contagious Courage,” the ability to pass on my victory over pain to someone else. To walk alongside and let them borrow my courage until they have some of their own. I become their mirror box. To give them hope, sharing the words they need to hear to see themselves whole and complete.
My favorite coaching question is, “What went well this week?” At first this really throws them off! They expect the opposite question, “So what’s wrong,” or “How’s your pain?” Most of them stammer as they try to turn their brain around and process the question. It’s as if I’m asking them to make a giant U-Turn. And I am.
There are 116 million people in the United States with chronic pain and each one needs the courage it takes to see themselves whole, and live life again. And every day I try to reach them. But the truth is everyone hurts, we all face pain in one way or another.
As we face the challenges of life, we all hear two voices. One screams, “You’ll never be normal.” The other gives us hope and contagious courage. It stands up boldly and declares, “You’ll walk again!”
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