"Some women are lost in the fire. Some women are built from it."
—Michelle K.
The Fire Within Blog
The Crime of Chronic Pain

I met Eddie on my first date with my life partner John nearly 36 years ago. John took me to a premier of Robert Redford’s masterpiece Ordinary People at the old dome theater in my Bay Area hometown.

I adored Eddie right off. Just before the lights dimmed, a booming voice came from the first row. “Hey, Garrett, what’s a sweetheart girl like that doing with a doofus like you?!” Every eye in the old dome shot to Eddie. He possessed great energy and humor. He had charisma to burn.

A week later John took me to Eddie’s house, er, theater where he showed us his latest “home” movies. Among others, this guy had made a brilliant, 8mm remake of Jaws. I could see how talented and driven Eddie was. His boundless love for showbiz was just like mine. And I realized that afternoon I would know – and probably work with – Eddie in Hollywood someday soon. Fade to black…

Cut to… a decade later. I was extremely ill with a mysterious body-wide pain that was triggered by a ballet injury. My life, my career were on hold while I survived day to day in housebound prison with only John at my side. Eddie, on the other hand, was a full-steam-ahead movie maker. Francis Ford Coppola had financed his first horror film and Eddie invited John and me to a private screening and party.

Despite my pain, I enjoyed the movie and people as best I could. But something struck me wrong. Eddie and the pre-teen actor who starred in his film had an odd relationship. Their word play and physical interaction suggested an inappropriate intimacy.

Still I was stunned when the papers reported Eddie had been convicted of child molestation and was in jail. Like mine, his life had come to a screeching halt, but for a radically different reason.

Unlike me, Eddie got a second shot at his dream. During his time behind bars, he wrote a screenplay – and again with Coppola’s backing, directed a critically-acclaimed film that did decent box-office. While I was appalled at the crime Eddie had committed, I yearned for the show biz life that was at his beck and call.

One day after John and I moved to LA, the phone rang and I was surprised to hear Eddie’s nervous voice. He wanted to re-connect and, while hesitant and confused, I was open to it. Others, however, not so much. Even though he’d done his time and was in on-going therapy, society damned him. Eddie was a pariah, marginalized – just like me due to my catastrophic, invisible disease.

Over the next several years, Eddie and I built a most-unlikely bond. We talked deeply about the depression, abandonment and isolation we felt after everyone from home ran for the hills. We shared the emotional scars of trying to re-build our impossible lives. Eddie was the only person concerned about John and worried over his constant caregiving duties. “Who’s there to help him?” he’d ask. I sadly replied, “No one.”

Then Eddie scored a big hit. Because I couldn’t get into a cinema, he personally screened me the freshly edited DVD version. The movie told the story of a social misfit with super-human powers. Eddie wanted to get my reaction first because “the lead character is you.” I was deeply touched.

After that, I saw Eddie less and less. The last time was at a Paramount Studios screening of his next film. The theater was so crowded it took me in my wheelchair an hour to get a word in. He kneeled down next to me and whispered, “You’re the only person in this room who cares about me. Everyone else just cares about what I can do for them.”

After Eddie invited me to come spend a day on the set of his blockbuster sequel, but didn’t follow through, I never heard from him again. He didn’t return my calls – and I felt that old familiar pang of abandonment.

I was left behind. I soon realized that the crime of high-impact chronic pain is more unforgiveable than the worst of our civil transgressions. Even though Eddie was a convicted sex offender, he was reliably able-bodied. He wasn’t housebound with an invisible disease. He wasn’t stuck.

My strong guess is that Eddie couldn’t deal with my never-ending pain because he’d done his time – and was free to move on and live his dreams. Later I got somewhat unstuck with my work as a patient advocate. But in my heart I’m still a performer, yearning, craving for that stage. There’s no pardon waiting for me.

On a broader scale, I suspect there’s no pardon for any woman (or man) in pain because society has yet to accept chronic pain as a serious public health problem. Until we have the awareness, research and resources afforded diseases like cancer, Alzheimer’s and HIV/AIDS, we’ll remain at the bottom of the heap.

There are 100 million people in the US with pain. For change, we must rally behind the National Pain Strategy. That’s how our voices will finally be heard and we’ll gain respect. Only then will we be removed from our shackles and embraced by mainstream society. Only then will we gain our get-out-jail card.

XO Cynthia