At age 20 I packed up and headed to Colorado from Boston, much in part due to the songs of John Denver. It was there that life became very positive for me. Fifteen years of growth and positivity. A new marriage and two daughters.
Then I injured my back at work.
I entered into a realm of trying to figure out what was wrong. Why was I in such pain? I felt like a pinball, being bounced back and forth through doctors, tests, possible diagnoses and surgeries. I was thrown out of one doctor’s office after 10 months of treatment because the doctor thought I was a drug addict.
I went through five years of hell, falling victim to a health care system I had no knowledge or understanding of. 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.
I lost my job because I was out so long for surgeries. I became a single father with custody of my two daughters, trying to support my family on disability.
I looked on the Internet for answers and came across information about Paget’s disease and Ankylosing Spondylitis. I asked my doctors to look into those diseases. They dismissed my suggestions.
Eventually, the insurance company dropped my case because I was never officially diagnosed. I lost my house and declared bankruptcy. I gave my kids over to their mom. After locking up my house and saying goodbye to my two girls, a day I’ll never forget, I left for Massachusetts, a defeated, disabled wanderer, lost in despair and sadness.
For almost two years I lived homeless on the streets of Boston. Then, while applying for financial aid, I learned about the Pain Center at Massachusetts General Hospital. I entered a year-long, outpatient pain treatment program and finally received my diagnoses of Paget’s and Spondylitis.
Paget’s disease is a degenerative bone disease that causes deformities and pain in the bones, usually the spine, pelvis, legs, skull, and the joints near the affected bones. It also causes nerve pain, because enlarged and deformed bones press against the spinal cord. With this type of nerve compression, pain radiates from the lower back into the legs, causing numbness, tingling, and weakness.
Ankylosing Spondylitis is a type of arthritis that affects the spine and sometimes other joints in the body, causing pain and stiffness, particularly in the back.
With the diagnosis of two diseases that are permanent, deteriorating and have no cures, suicide seemed the only logical step. I just wanted to end it all. I lived with these bleak thoughts for months in between appointments.
Then I met my coach, a physical therapist who loved her work and took it very seriously. She educated me, trained me, and inspired me to take up the challenge of living again. She gave me the spirit of accepting challenge, the athlete’s outlook of overcoming adversities.
With a smack in the head and a stern attitude, she set me straight on many issues, like the good mentor she was. 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!
Part of what helped me learn to accept the situation was the psychological treatment I underwent. My behavioral therapist helped me realize that I had too many things on my plate and that I was fighting too hard. She helped me to redirect my focus and accept the facts of my life. She taught me how to apply forgiveness.
I took this reinvented spirit and decided to put all of the things I was I learning to the test.
In 2005, I went out and walked 440 miles, from Boston to Washington, DC.
A few months later, I began another walk, a meandering journey that covered 2,400 miles — six times the length of first one.
A national pain foundation sponsored me as I walked from Chicago to Los Angeles on historic Route 66. Along the way 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.” 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. I would show up at a pain clinic, after walking a couple of hundred miles, and people would ask, “How did you do that?”
I learned that pain was conquerable. It might never go away, but its power over us can be greatly diminished.
How was I able to accomplish this? I was seeing the pain cycle through other’s eyes, the pieces they each held to the puzzle. I began to understand how my inner peace had gone away, and was replaced with confusion, doubt and fear. That negativity, which had become my way of life, was amplifying my pain. I had to turn the volume down.
By the time the Route 66 walk ended, after nearly a year of trial and tribulation, I had finally learned the answer, and the answer was the question:
Why did pain destroy my life? Because I let it.
Simple answer. Complex question. Long journey. A journey towards inner peace.
It’s one thing to learn new ways of thinking and new words to add to your vocabulary. It’s another thing to walk 3,000 miles to prove it.
Stop looking at the finish line and look at your individual steps instead. Look at the amazing things happening right around you. When you look up you’ll be amazed how many miles you’ve gone.
Dennis Kinch moved back to Colorado and now lives in Boulder. He is the founder and director of PEAR (patient engagement, awareness and reinvention), a pain management program being developed at the U.S. Pain Foundation. Dennis has developed the “Pain Cycle” to show people how they fall into the negative side and how to “climb out” to the positive side.
National Pain Report invites other readers to share their stories with us.
Send them to firstname.lastname@example.org
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.