The Next Step

Stanford Medicine X, otherwise known as MedX, has been on my mind for almost three years now.

The conference unites patients, providers, technologists, and researchers for three jam-packed days of patient advocacy heaven. It’s my understanding that MedX in itself is actually a year-round program of online events and classes at Stanford University that culminate in an annual conference at the Stanford University School of Medicine. I made a reference to MedX last spring in a previous blog post.

I’ve followed the conference via video stream for the past two years, but never applied until this year because I didn’t think that I had the credentials to attend or present. Then, I saw another college student on stage. The student was a blogger and tweeter named Emily, aka Chronic Curve, who has several rare, autoinflammatory diseases. I immediately direct messaged her on Twitter to ask about her experience at MedX once the conference was over. There was only so much that can be discussed via 140 character messaging, and we set up a Google Hangout to talk more. We exchanged stories, and the more we talked, the more I ended up regretting not applying to MedX sooner.

The application consisted of eight, 1,000 character response questions. I may or may not have read the character count as a word count and spent a month crafting eight nearly 1,000 word responses, tried to submit them, and then was horrified to find that I was mistaken. I think that those responses, while they ended up having to be condensed and cut up into a quarter of their original size, were some of the best things I’ve ever written. I’m used to being the “sick person” doing the basic explaining to “healthy people,” and am not usually challenged by other members of health communities to elaborate further. All of that writing and mental strain sent me into a 14-hour sleep stupor to recover when it was all said and done.

There has always been massive arthritis and diabetes representation amongst patient attendees in the past, but I didn’t see any epilepsy or brain tumor representation. Thus, Liz and I applied to present about those two facets of our lives, and how our personal experiences with the two spawned #BTSM chats. We want to talk about building a platform of support and advocacy in the brain tumor community, and how to make a difference in this community where half of us will die three years after diagnosis. Attending and speaking about #BTSM, epilepsy, and brain tumors in general at this event alongside Liz feels like the next step. It just makes sense.

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