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What My 20-Year Health Journey Should Teach Us About Undertreating Pain

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This September, I told 2,200 intimate listeners at TEDx Boulder how proper pain treatment allowed me to work as a federal civil rights attorney after a surgery left me unable to sit, stand or walk and in severe pain. This is my story.

Twenty-three years ago, I was ensconced in my dream job as an attorney in the Civil Rights Division of the Department of Justice, equally enjoying D.C. museums and the neighboring Shenandoahs, when something happened to change the course of my life.

I was working at my desk when my back started to burn; it felt like acid eating my spine. My muscles seized and threw me from my chair. As I curled on the floor, my body seared with pain. The real trouble began the next day and in the days and weeks to come. The pain never stopped. It only intensified.

At the age of 30, I could barely stand. Sitting was impossible. Reclining relieved some of the compression in my spine, so it became my dominant posture. I’d commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Sometimes during this period, I was able to venture out into the world lying on a folding lawn chair. But for many, many years I was entirely bedridden.

The cause of this reversal was a surgery, when a physician severed nerve plexuses in my spine – major networks serving my pelvis, legs and lower back. The pain and muscular weakness only appeared when the damaged nerves grew back. The doctors told me that there would be no cure, that I’d never get better and would only worsen.

When this happened, I was enforcing the Americans With Disabilities Act, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV. Like so many other people with disabilities, I continued to work and held together a life as best I could.
Using video teleconferencing, I negotiated with the San Francisco 49ers and the Giants and the Walt Disney Company while reclined. I won arguments in federal court from my folding lawn chair. I drafted the current regulations under the ADA, coordinated with the White House and supervised thousands of cases by hundreds of attorneys across the country from a screen and well-camouflaged bed.

None of this would have been possible if I hadn’t had access to appropriate pain management, which included treatment with opioids.

Although it took considerable time and rehabilitative effort, I slowly and eventually recovered my mobility and health enough to enjoy hiking in the Colorado mountains. A combination of pain management, integrative treatments, and a self-discovered, body-based form of meditation — all contributed to healing a condition that was supposed only to deteriorate.

I’d like to say that my dance with pain ended there. Just last summer, as I was hiking in Telluride, Colorado when my legs buckled underneath me. Years without weight bearing had eroded the disks in my spine, and once I was up and active, my nerves became compressed and my vertebrae fractured. When conservative treatment failed, I underwent spinal reconstruction with artificial disks and remodeling of the vertebrae. When I spoke at TEDx Boulder, it was my first time standing post-surgically without a brace.

All of the attention on the opioid epidemic inspired me to tell my story because proper pain treatment gave me a life, and I worry about people in serious pain today who are losing access to treatment. People in pain need a voice in the conversation, especially since severe or persistent pain affects more Americans than opioid abuse. I am doing what I can, writing and speaking about pain, resilience, and how we heal.

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Originally published: November 3, 2017
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