Sunday 19th February 2017,
The Liz Army

Watch The Open Patient documentary

The Open Patient: Healing Through Sharing

A few months back I mentioned I would appear in a short documentary called The Open Patient: Healing Through Sharing produced by RedHat. The 15-minute documentary is out now and you can watch it for free on the Internet. I embedded the video below.

Why was I chosen to be in this documentary?

This is a question I have asked myself a number of times since I was originally contacted in December 2015.

Who am I? I am not anyone special. Many people diagnosed with serious conditions are now turning to the Internet to document their journeys through blogs and other social media platforms.

Perhaps I am different because I have been blogging since 2008 when the idea of talking openly about cancer was not a common thing to do.

I admit, I was scared at first. I didn’t mind sharing my story so much, but I was concerned I would be discriminated against by future employers. Today, so much of my professional life is closely entwined with my passion for healthcare and patient engagement that it is impossible to separate the two.

This week I recognize my 8th seizure-versary: the date when I experienced my first grand mal seizure, a moment that changed my life forever. In my experience, a grand mal seizure is a painful, scary process in which I am no longer in control of my own body or consciousness.

Recognizing this moment in my life is important to me because it made me aware that something was seriously wrong in my body–in my brain–and this knowledge led me down a path toward diagnosis, treatment, self-discovery, curiosity, “survivorship,” and empowerment.

I am not a doctor. I am not a researcher. I am not going to come up with the cure for cancer on my own. But as a citizen scientist I can play an important role by sharing my experience with you, the reader of this blog.

P.S. Thank you to the team at RedHat for putting together this fantastic documentary and giving me a chance to connect with Steven Keating and the people at OpenNotes.

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  • myshingle

    My husband died of brain cancer on May 27, 2015. He was diagnosed just 3 weeks after we returned from a family vacation overseas to celebrate our older daughter’s graduation – and due to severe hydrocephalus, he deteriorated from a $150/hr programmer on July 16, 2015 to someone who could not use a cellphone or speak by the end of the month. Surgery alleviated many of these symptoms but his full cognitive abilities never were restored – and I was left to juggle his care, paying 2 private school tuitions on one income which left little time for me to research or shop around for the best treatment. If an open source data base had been available, it would have made a significant difference. I know that my husband’s cancer was very serious, but I am convinced that if I could have squeezed an extra 3-4 more months out, he would have had access to other treatments. This was my experience – https://medium.com/@carolynelefant/my-husband-died-from-brain-cancer-johns-hopkins-medine-should-be-ashamed-not-me-6bbbad525c16#.nemig6l83 I am happy to contribute all of his information since his tumor – midbrain stem – is very rare in adult patients.