“When my sisters’ neurologist recently suggested I write about my personal experience in the setting of participatory medicine, I felt somewhat overwhelmed at the thought of having to tell a story that has taken 16 years to unfold. While it has been punctuated by great successes, some failures, numerous crises, and considerable heartache, this is a story that will never end. I like to think of it as a “love story;” certainly not of the romantic type, but a love story nevertheless, for only great love could have compelled me over much of my adult life to advocate so relentlessly for my developmentally disabled sisters, the patients featured in this piece. I hope what I have learned and continue to learn as their advocate will inspire others to persevere and believe that positive outcomes are possible, even in the face of what may appear to be insurmountable odds.”
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