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Express Yourself

In Irving Stone's biography of Vincent Van Gogh there is a line that reads, "Many times in your life you may think you are failing, but ultimately you will express yourself and that expression will justify your life." It was years ago that I first came across this maxim, and it immediately halted my reading and jolted my heart. There is no other quote that has resonated so deeply within me and continued to do so.

I've been lucky enough to be a writer in some form or fashion for the vast majority of my life. While I was in kindergarten, a local writing teacher worked with our class, and I wrote a story about a grasshopper. My mother, of course, saved the story in a box along with school photos, misshapen pieces of art class pottery, and report cards. The writing teacher had hailed my grasshopper story as very descriptive and encouraged me to keep writing. Several years later, the writing teacher—Kathryn Stripling Byer—was named the state's poet laureate. This summer, she featured my poetry on her blog. Life has a way of arching back on itself.

This Saturday, I was stirring a pat of not-quite-butter into a bowl of peas in preparation for dinner when it struck me that I am experiencing a similar arch. While in college, my news writing instructor required that each student write a variety of stories—crime, courts, etc.—as well as pick a beat about which an additional two stories would be written. I chose the medical beat. Throughout the class, my favorite story was one I wrote about the Amplatzer Septal Occluder. In a catheterization laboratory procedure, the device is run into the heart and through the defect (a.k.a. hole). It helps to picture the device as an Oreo. One wire mesh disk is deployed on one side of the hole (cookie), then a tiny wire mesh waist (creme filling) connects to a second mesh disk that is deployed on the other side of the hole (cookie). The two disks cover the defect completely and allow heart tissue to grow around the wire mesh structure. With the Amplatzer Septal Occluder, what was once open heart surgery became a procedure with a one- to two-day hospital stay for recovery.

At the time I wrote the story, Dr. Michael R. Mill, an associate investigator on a 1998 AGA Medical Corporation study about closure of atrial septal defects using the Amplatzer Septal Occluder, was the Chief of Cardiothoracic Surgery at UNC School of Medicine. Though a student, I was permitted to interview doctors performing the first surgeries at UNC using the septal occluder and the mother of an adolescent patient who had the device implanted. Fortunately, I made it through college before becoming the professional patient that I am today; nonetheless, the impact the Amplatzer Septal Occluder would make on medicine and on patients' lives was not lost on me. I found everything about the story fascinating from the technical details of how the device worked to connecting with a worried mother who, by agreeing for her son to undergo a relatively new procedure, had found a way to lessen her child's trauma.

I don't know what about stirring a pat of not-quite-butter into a bowl of peas has to do with remembering my love for my first medically-based story. I also don't know why I didn't realize that there was something larger at play and redirect myself and my studies to capitalize on my interest. It has taken the past 31 years of wrestling with my own health and using my love for writing to express what I have gone through to get me to this point—the point that I identify myself as an ePatient, a healthcare blogger, and a patient advocate. I wholeheartedly embrace my suffering and my diagnosis with an incurable rare disease because by sharing my story and using my skills I may help others. Everything has arched back in on itself and finally come together such that ultimately I am expressing myself, and that expression justifies my life.

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