Friday, June 10, 2011

Walking with a Purpose

On Tuesday night, I had the honor of being art.

My jacket: Data Mind, with the artist, Courtney Mazza
In April I had been invited by Regina Holliday to participate in The Walking Gallery and wear a mural on one of my jackets that represented a message related to patient rights. I was humbled to be invited, and maybe a little surprised. Although I have worked extensively in the pharma and healthcare industries, my career has focused on education and engagement of the providers in these industries...not as much on the patients.

I met Regina at the ePatient Connections conference in October 2010. We talked at the first evening's reception about kids, single mom travel issues, and we started following each other on Twitter. Regina was attending the conference to create paintings during the conference that were to be auctioned off on the last day. Just before the auction, Regina spoke.

Maybe you've met someone like Regina before. Someone who you meet casually and like immediately, without any idea who they are and what they are capable of. When Regina took the stage, I don't think most people knew what was about to hit them. She is a powerhouse, a force, and no one in that room was immune to the power of her message.

Regina's story is everyone's story as much as it is uniquely hers. Her husband hadn't been feeling well, was repeatedly misdiagnosed, and when it finally became clear what was wrong, there wasn't much time. He had Stage 4 kidney cancer. They had two young sons, the oldest of which is autistic. They were repeatedly treated as less than human by a healthcare system that is cumbersome, expensive, and doesn't put patients and families first. Regina's story of her husband's diagnosis, treatment, and death is sad, tragic and could have been much, much different.

She could have accepted what happened. She could have fallen apart. She could have become angry and bitter. She could have just moved on.

Instead, Regina has taken her story, her pain, and her outrage and used the gift of her art to inspire others to action. The truth? We don't have to accept the status quo. All of us are patients, caregivers, and people. We don't have to accept callous treatment from a system that perpetuates our depersonalization, our dehumanization. Yes, Regina is advocating for changes in the healthcare system, but her message isn't limited to patient rights. In education, in practically any government agency...we accept the limitations of the system. We live with red tape and outdated processes and cumbersome systems and we drudge through, thinking we have no right to better. We all deserve better.

Regina has a powerful voice and message, but she can't do it alone. She asked me, and many, many others, to help her communicate this message as part of The Walking Gallery. We are all patients. We are all caregivers. We are all people. We should not settle for being treated like insignificant cogs in a wheel, like numbers on a spreadsheet. Her story is all of our stories.

I wore my jacket proudly in The Walking Gallery. I'll wear it proudly at other conferences and events. I'll tell Regina's story, and my story too. I will tell you not to accept the status quo. And I'll ask you to pass that message on. One story, one jacket, one person can start a revolution. Thank you, Regina, for reminding all of us that we deserve better and for sharing your story and message. You have stood up in the face of adversity and inspired us to fight for change. I carry that responsibility with honor.

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