In her book Everybody’s Got Something, Good Morning America co-host Robin Roberts writes movingly about her near-fatal battle in 2012 with MDS, a rare cancer of the bone marrow. Her sister donated life-saving stem cells, and today Robin is back on the air, back to her life. Yes, there were dark days (where she was so sick from chemo, perhaps it’s a blessing she can’t remember them). But overall there is an unshakable optimism that infuses every step of her journey. (OK, she may have had certain advantages others don’t, but nearly dying of cancer is a pretty big leveler.) Robin’s beloved Momma used to say, “Make your mess your message”. Reading that, it struck me I might have agonized needlessly over the right words in writing up the website of the Patient Voice Institute. Because Robin’s Momma had it right. Ultimately, what each of the amazing team members and senior advisors at PVI have chosen to do following eye-opening medical experiences, is exactly what Robin’s mom said: “make your mess, your message”. To me that means, sort through your experiences to find the golden nuggets of learning, coulda-shouldas and stuff you want others to know, then share it. Robin adds her own wisdom: “everybody’s got something; but it’s also true that everybody, and I do mean everybody, also has something to give.”
We couldn’t agree more. So, PVI will use this space to share our stories and the lessons we learned (and continue to learn), and work to make things better. We’ll count on the wisdom of our generous patient advocate universe (lord knows they’ve helped lots of us). We also welcome insights from our advisors at Planetree, AARP, the Leapfrog Group and other like-minded folks on the other side of the bed rail, because we’re all in this together, and the goal is success. To keep things manageable, we’ll organize our thinking around the Patient Voice Principles: key things that matter most to patients (see the diagram at left).
Next time, we’ll hear from Trina Ostrander of Buffalo, New York, whose son has required 24/7 care since he was 22 months old (he’s now a teenager). As Trina learned, many of us never realize how strong we are until we are fighting for a sick child. Trina tells the Patient Voice Institute, “it has always been my passion to help others with everything I struggled with over the last 12 years. I don’t feel other families should have to figure things out like I did….on my own.” Yes, “everybody’s got something”…but we can also learn a lot from generous-spirited people like Trina. Please share this link with others who believe all of us—including patients– have a role in making better health care a reality. Join the Patient Voice Institute on Facebook and Twitter. Want to share your story? Email info@patientvoiceinstitute.org.
