Advocates make things happen: Confessions of a middle-aged irritant |
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Sitting on my desk is an acrylic block encasing a strip of Linotype that spells out my maiden name. Long Island’s Newsday awarded it to me at age 14 when I was named Teen Irritant of the year. As unflattering as this distinction sounds, it was the name of a column featuring letters to the editor written by teens, and I had much to say. Time has not changed this. Today, as a Middle-Aged Irritant, I write more letters to the editor than ever, with a new focus on Parkinson’s-related issues. Out-of-state friends will call to ask if I’d like to answer some letter in their local newspaper. “Let me check if I still have a pulse,” I answer. “Okay, I’ll do it.” Seeing my letter about embryonic stem cell research published in the NY Times was “as good as it gets” for a native New Yorker living in the Midwest. Second only to this was my husband having my letters printed and bound into a book he titled, Words That Matter, and gifted to family and friends. Although the passage of time has clouded my Teen Irritant award and stolen its luster, much as Parkinson’s disease is trying to do to me, my commitment to advocacy is unwavering. My greatest satisfaction comes from empowering other PWP to become better healthcare consumers and hearing back from them about their successes, especially in taking an active role in managing their own illness. Woody Allen says, “People can be divided into three groups: those who make things happen, those who watch things happen, and those who wonder what happened.” I like to believe I fall into the first category, and I hope you do, too.
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