After #MedX: The Big and The Little

A few weeks before attending Stanford Medicine X (#MedX) 2015, I wrote down my thoughts about life in the “Before #MedX” stage.  I knew that this experience would be life-changing, inspiring, and empowering, but if I multiplied those factors by a billion, I still would have underestimated just how powerful the #MedX experience was for those of us who were so blessed to be there.

We talk and tweet a lot about the big moments at #MedX: when Cyrena Gawuga brought the crowd to our feet during her Ignite! talk, which chronicled her personal growth in the face of what previously seemed like a failure; when Abby Norman carried us through the whole spectrum of feelings- from hysterical laughter at her wit and humor to blinking back tears in awe of her journey to get properly-diagnosed with endometriosis and appendicitis; when Julie Flygare illustrated that anything is possible despite narcolepsy; when we marveled at the strength and determination of Emily Kramer-Golinkoff, who is improving the lives of those with cystic fibrosis as they race against time (side note: I was totally “fangirling!”); or when Ben Bahan taught us that he can communicate and listen (and do so with a sense of humor that rivals Amy Schumer’s!) despite being deaf.

MedX stage

All of those moments were just- Wow.  My fingers couldn’t tweet the powerful one-liners fast enough.  Every sentence spoken was just that darn spellbinding.

As much as #MedX completely renews your sense of purpose and advocacy with the big headliner stories, it also reinforces those concepts in the little, behind-the-scenes moments.

I received support from #MedX before I even stepped foot on the Stanford campus.  When a good friend’s child was diagnosed with a serious condition recently, I sought advice on what to say and what not to say (from a 2015 ePatient who I will not name here to respect my friend’s privacy; ePatient, you know who you are- thank you).  The #MedX advisory board and administrative staff made sure that all of the i’s were dotted and the t’s were crossed to ensure a pleasant experience for conference attendees.  #MedX alums were always available to yield my rookie questions at all hours of the night.  At the ePatient dinner, our hearts overflowed with compassion and respect for one another.  The list of human goodwill goes on and on when it comes to Medicine X.

From a diabetic online community (#doc) standpoint, I enjoyed talking about the highs and the lows with Chris Snider, Amy Tenderich of Diabetes Mine, Sophie Thacher, Meredith Hurston, and Dana Lewis- who carried her (artificial) pancreas in her purse, which automatically ranks her pretty darn high in my book of praise!  It was refreshing for me to be around people who understood without me having to really say anything, who could swap campfire tales of funny diabetes moments, and who were so passionate about our #doc advocacy endeavors.

The #MedX workshops were particularly informative and interactive.  Dr. Bonnie Feldman enthralled us with her autoimmune disease research, and we pledged to keep in touch and work hard to crack the autoimmune code as a community.  My good friend and fellow ePatient, Danielle Edges, held a workshop on eHealth in pediatrics, which featured her family’s brave story of caring for a daughter with a congenital heart defect called heterotaxy and another daughter who is secondarily impacted by having a sibling with a chronic condition.  It was so uplifting to witness this Mom, who would go to the ends of the earth to help her family, whose humor remained intact in the face of challenging circumstances, and whose loyalty and friendship is beyond measure.

#MedX is renowned for bringing together the various participants in the realm of healthcare.  We hear the term “Big Pharma” thrown around quite often online.  But I can assure you that the pharmaceutical representation at #MedX was laser-focused on getting the little details right and connecting with the patients whom they serve.  I was asked, “What can we do for you?  What message do you want us to hear from your patient perspective?”  I was so humbled by their willingness to listen and their desire to drive innovation.

There were also the little moments at the Sheraton pool, where ePatients and other #MedX attendees dined after the day of conference events concluded.  Nisha Pradhan’s passions for advancing anosmia research and providing an empathetic medical experience were contagious.  Britta Bloomquist taught me about life in northern Minnesota and juggling Lyme disease and ankylosing spondylitis.  Kristin Coppens was an example of grace and determination while managing multiple chronic conditions.

Natalie Abbott and her service dog, Cassius, educated us on Moebius syndrome, a rare disease only diagnosed in 1,000 patients thus far.  Natalie and Cassius were the epitome of a good team; they worked together seamlessly, never complaining.  I gained perspective that I must admit I very much needed by watching Natalie and Cassius together: Moebius syndrome is a passenger along for the ride in Natalie’s very-accomplished life, not the other way around.  We can apply that same lesson to every sort of adversity in life.  Thank you for inspiring me so much, Natalie and Cassius!

There are so many other big and little moments from #MedX which I would love to highlight, but the truth is that I could write a novella about how great each individual who attended is.  I would like those reading this blog to know that #MedX is a phenomenal experience because of the positive, enthusiastic, dare-to-dream-big nature of its attendees.  We are without a doubt going to change healthcare for the better.  Heck, we already have, and we’re just getting started.

The best way to summarize what #MedX means to me is to leave you with a story.  (We really like stories at #MedX!):

I woke up having some concerning diabetes issues on the first day of my #MedX experience, the pre-conference Healthcare Innovation Summit event.  To be honest, I felt quite ill.  My mother convinced me to take the shuttle to the conference location.  There would be plenty of healthcare geniuses around if I needed assistance, she advised.  How very, very true.

As the day went on and I took many insulin injections, my diabetes situation began to improve.  The group disbanded for an afternoon coffee break, and I walked to a bench in the shade of the Stanford campus.  Eventually, a professionally-clad woman sat down on the neighboring bench.

“This shade is so welcome,” she noted.

“Absolutely, and it’s nice and quiet here- a good opportunity to take a breather,” I replied.

And so we chatted.  She was at #MedX representing her healthcare company’s new technological product.  Her excitement for the tech’s potential to improve lives was palpable, and it was clear she loved her work.

“Can you explain to me what an ePatient is?” she asked.

“We’re all here to advocate for our respective causes.  We believe wholeheartedly in improving healthcare, in humanizing the story.”

“Is diabetes… hard?  As in, does it impact you a lot?” she asked tentatively.

“Sometimes…,” I admitted.  “We fight hard for our health every day.  But we believe in a brighter future.  Isn’t that why we’re all here to begin with?”

And with that we walked back towards the conference hall, two people on different sides of the healthcare equation, united by a common ambition to help others.

That’s what #MedX is all about.  It was my greatest honor to attend this year, and I would like to sincerely thank everyone at Medicine X for sharing their perspectives.  Keep doing big (and meaningful little) things.

Disclosure: I attended #MedX on a partial scholarship as an ePatient delegate.  Opinions expressed here are strictly my own.

     Zoe Chu                         MedX sign

^ With the world-famous #MedX mascot, Zoe Chu!                ^ Excited for #MedX!

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Before #MedX

Last year’s Stanford Medicine X (#MedX) took place during the same weekend that I created my diabetes blog, Very Light, No Sugar. I was new to the internet blogosphere in September of 2014, and I spent much of my time that weekend soaking it all in.

This exists?! THIS! These concepts that have been bouncing around in my head for so long have a place and a name and a community?! Perhaps I can be part of it? Everyone seems friendly and cool! YES!!!

These were my initial thoughts as I perused the blogs of the diabetic online community (#doc) and followed the #MedX hashtag as ePatient delegates and other MedX attendees tweeted live from the conference. I later watched videos of the MedX 2014 speeches, read blogs of MedX alums, and visited and re-visited and re-visited some more the 2015 ePatient application portion of the Stanford Medicine X website.

I made the rookie mistake of writing 1,000-word answers to the MedX application instead of providing 1,000-character responses as instructed. Upon discovering this issue, I stripped my answers down to the core of why I felt so passionately about this conference and improving healthcare, and I finally clicked “submit” late one evening. Fast forward to now- about five weeks away from MedX 2015- and I could not be more excited to be an ePatient delegate this year and to share the information absorbed at the conference with all of you.

MedX is so special because it takes the “What if’s?” and does not shy away from them in fear.  Rather, MedX imagines and creates the possibilities.  MedX connects the respective patient, provider, and technology dots of the healthcare equation by putting them all together at the same conference.  They are allowed to work together, to dare to dream big, to share the positives and the negatives of their personal healthcare experiences, and to learn from one another in the process.  Recognizing that healthcare is an ongoing evolution, MedX keeps the conversation going before, during, and after the conference.

Many MedX alums have noted how much their lives were positively-influenced by attending MedX. With the conference just around the corner, I find myself keenly aware that this is the “before” stage for me. I study healthcare, work in it, live it through my experience as a type one diabetic, and have moments of inspiration and frustration along the way. After attending MedX from September 25 through September 27, 2015, I will gain a viewpoint that covers a vast array of healthcare experiences- those of other patients, those of providers, and those of technological gurus and innovators in the healthcare field. This will be the “after” stage. I already know that this opportunity is a blessing beyond what I can imagine right now, and I am so very thankful to get to attend MedX 2015.

I am most excited about learning from different perspectives while at MedX. Although I know a lot about diabetes because I live with it, I recognize that healthcare goes far beyond insulin injections and endocrinology. At MedX, there will be industry leaders discussing breakthroughs in technology, ePatients who have battled brain tumors or acted as caregivers for their loved ones, and providers who put their patients’ best interests first and foremost. Taken together, all of these contexts are a valuable asset to improving healthcare as a whole.

The fellow 2015 ePatient delegates to MedX are a great crew of people, as are the Stanford Medicine X administrative team and advisory board. MedX participants come from diverse backgrounds, encounter different health obstacles, and have unique experiences from which to draw from. Yet we share an unspoken comradery before even having stepped foot on the Stanford campus. We have put ourselves out there online because we believe wholeheartedly in improving healthcare. We advocate for better access to care, more open dialogues amongst all members of the healthcare equation, promising futures for those who endure our respective disease processes, and more. We know the feelings of joy on the good days and pain on the bad days, and we maintain hope that the best is yet to come in the future. MedX provides the perfect environment in which to work hard towards these goals and to be a part of the conversation about improving healthcare.

For more information on Stanford MedX, please visit medicinex.stanford.edu.

 

Disclaimer: I have received a partial scholarship to attend MedX as a 2015 ePatient delegate. Opinions expressed here are strictly my own.