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Would You Draw a Line?
Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.* As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident. One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with. He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply…