Women In Pain (WIP for short) was For Grace’s exciting new project and the cause I wanted most to lead. Springing from a 2001 medical study entitled “The Girl Who Cried Pain” and a follow-up article in The New York Times on the neglect women face in getting their pain treated, I couldn’t wait for the world to learn about WIP. To have a coalition of nonprofit pain leaders and a deep funder behind our movement was a dream.
A dream that would slowly erode into the ugliest kind of nightmare.
When the coalition and Purdue began meeting, the first order of business was to establish an understanding that everyone would be working under For Grace’s umbrella, as we initiated the WIP concept and felt a deep ownership. In fact, we were strongly considering expanding our mission from CRPS awareness to the plight of all women in pain.
Though I’m known for my work ethic, I soon felt overwhelmed by my load. To keep up with For Grace’s everyday activities and the coalition’s needs, John and I were grinding through long hours, seven days a week.
Almost out of the gates, we were getting pushback from coalition members about seemingly everything. Jealousies erupted as I was getting the lion’s share of media attention due to my hustle and drive. Per their demands, I generated media coverage for all members, but that wasn’t enough. Some of them wanted me to script out their answers for interviews. I was beginning to feel beaten.
‘The Correct Response’
One day I received a call from Purdue inviting me to give the keynote address for pain advocacy conferences they were underwriting in Denver and Philadelphia. The purpose of these events – or so I was told – was to train and inspire pain leaders to effectively interface with media and policy makers.
The person who’d be overlooking this affair was Dr. Richard Sackler, the grand dragon of the family-owned Purdue empire. At the event, Purdue minions were twisted like pretzels in their desire to please this unimpressive man, who struck me as distant and cold.
I was insulted when Purdue insisted that I take a media training class. In a taped, mock interview with their crisis management consultant, I was asked, “What treatment do you advise when a person gets a CRPS diagnosis?”
“Well, there’s a whole range of options out there, including alternative ones,” I answered, spreading my hands a yard wide. “Remember, what works for one person may not work for the next.”
Purdue’s consultant chided me. “As the up-and-coming pain star, you should rethink your answer. The correct response is to take OxyContin,” she said.
Stunned, I responded, “But that would kill people. There’s nothing to rethink.” I felt trapped in a queasy Twilight Zone episode, as not a soul in the crowded room of pain advocacy leaders and healthcare professionals backed me up.
That night, ensconced in our five-star hotel room, it dawned on John and me that everyone in this scheme was training to be a de facto sales force for OxyContin. We were the only schmucks not in on it, though Purdue was actively grooming me to be their #1 patient sales person.
This bizarre, shady gathering left me with a rancid taste and my enthusiasm curbed for the coalition. But I forged on, at the behest of my advisors, to give Purdue a fair chance to find common ground, a notion I now laugh at.
Next, Purdue offered me an extraordinary opportunity to make WIP fly in an influential, national arena. I was invited to bring our project to “Women In Government”, a powerful organization comprised of female state legislators throughout the country. Thrilled, I introduced my cause at their western regional meeting in Honolulu, then prepared to close the deal at their annual conference in Tucson.
I must admit, I was enjoying Purdue’s lavish courtship – travel, the chauffeur-driven town cars, the choicest suites and the finest meals. After all, I’d earned these perks, I told myself. I was working damn hard and was extremely effective with my message. I knew I was good at what I was doing and it was gratifying to be recognized.
But Purdue continued their insidious attempts to control me. Before my speech, Brenda chided that I’d better knock it out of the park as they were spending a small mint. Further, I was not to go one nanosecond over my 20 minute speaking limit, or else! Hmmm, not the good luck pat on the back I’d hoped for.
Fuming, I made a beeline for the event coordinator, telling her of Brenda’s abuse. Her face turned beet red, angrily telling me that Purdue didn’t run their show. This kind woman reassured me to take a deep breath, then go out and do my thing. So I did.
During my standing ovation, the director came over and hugged me with eyes welling. Joy confided with the room her ongoing bout with chronic pain, along with her ringing endorsement of the WIP movement. Then I was circled by legislators, shaking my hand and thanking me. Most important, they said they’d do whatever I asked.
Later that day, Brenda showed me first-hand what my advocacy future would look like if I played nice with Purdue. During a special session, I watched a Broadway-level singer/actor/cancer survivor entertain the audience, giving them an update about her cause to promote a cervical vaccine. She was living my advocacy dream job – traveling the world, performing, making great money, all the while helping people. That afternoon, she captivated the room.
I had stars in my eyes. For the first time since losing my performance career at 21 due to CRPS, I was being offered a job that would completely feed me. And it was a more noble pursuit than entertaining, as I’d be helping, even saving, many people. But could I get Purdue to come around? They wouldn’t want my services solely to peddle OxyContin, right?
There’s much bigger fish to fry with our shared mission (or so I thought) to put chronic pain and gender care bias on the map. This was my great passion, and I was determined more than ever to thread that needle.
Purdue Wants More
But my naïve hope didn’t float for long. When we restarted our coalition meetings, the women were stone cold toward me, and I felt punished. Their jealousies were amping, and managing all the egos and expectations added to my overload. I began feeling itchy that the coalition was grinding me to dust in an attempt to heist the project, leaving For Grace behind. The walls were closing in.
