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A New Direction. An Empowered PatientArticle posted on Monday, August, 9th, 2010 at 8:00 am
For a person who always has a plan, finding myself in a constant state of “new territory” with no clear direction in sight can be very frustrating. So I listen. And I wait. I watch as doors close and windows open.
Last week there seemed to be no open windows. It was one of those weeks when I felt completely outnumbered. Outnumbered by stories of patients who’ve suffered because they didn’t have the knowledge and support to fight for the answers and the treatment they needed. Outnumbered by doctors that shouldn’t be doctors. Outnumbered by hospitals and doctors offices that don’t have systems in place to keep patients from getting lost in the shuffle. And I couldn’t find an open window.
On Friday, I think I found one. I received two emails from two different friends within 10 minutes of each other. Each one said “I saw this article and it reminded me of Neely’s story.” They both included the same link to an article that was posted on CNN. (I’ll take that as an open window.)
The article was written by Elizabeth Cohen the Senior Medical Correspondent at CNN. (I think she was already a writer for CNN when she experienced something similar to what we experienced with our former pediatrician, Christie Pediatric Group.) She began writing a column that was focused on Empowering Patients. Which is a really great way to say what I feel like I’ve been trying to do. Her column seems to have been a great success and she has recently published a book called the Empowered Patient that will be coming out this August. I can’t wait to read it.
I’m not sure yet where this will lead, but I have no doubt that I need to know Elizabeth Cohen. (If you know her, I’d appreciate the introduction. ) If not….stay tuned. I’ll keep you posted on progress as I reach out to her.
I have this mission. I didn’t ask for it and I’m not sure what then end looks like. (I’m not even sure if there is an end.) I’m grateful that 10+ years in marketing have taught me how to tell a story, create awareness, and reach people, but there are lots of days when I am at a true loss for what should be “the right” next step. Because when you peel back the layers, I am still a hurt Mom who is angry that my child suffered and I want to keep that from happening to another family. It is difficult to not let that hurt and anger drive my decisions (or my words.) But that’s what I know I have to do.
The point is – the article on CNN introduced me to another Mom (who no doubt is also hurt and angry that her child had to suffer.) I’m certainly not happy for what she went through. But I am happy at the prospect of meeting someone who has traveled the road I’m on. It sure feels a lot better to connect with people who understand where I’ve been and who share the same mission. I can’t wait to meet her – I just have to figure out how.