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Medicine X 2014: It’s Complicated | ChroniCarly
a large group of people on a stage

2014 MedX ePatients

I’ve had a complicated relationship with MedX. Earlier, I thought it was just this year, the stress of having to get so much done, learning so much on the fly, feeling (perhaps unfairly on my part) not as much support as I needed. I was first in a difficult living situation and then dealing with a big move and transition to being on my own (translation: alone?) again.

But actually my first time at Medicine X in 2012 was difficult too, as I lost my job just a few weeks before and my home around the same time as the conference. It was hard to see so many people kicking butt and living bravely when I felt like such a failure. I stayed with friends in the Bay Area because I could not afford the hotel, and missed out on a lot of bonding with other ePatients as a result. I spent a lot of time alone, or talking with Hugo in the mornings and off in a corner watching Regina Holliday paint Walking Gallery jackets later in the day.

I’m not sure if it’s possible for any one of us to feel totally secure standing among the group of amazing people picked to be ePatient delegates, but I know it’s especially hard for me. It’s hard to have to miss out on fun times because I absolutely need sleep. It’s hard to stare my limitations in the face daily in normal life, but when you’re in the middle of the ePatient equivalent of Disneyland, it’s even harder to drag your malfunctioning body and frizzled brain back to bed. It’s hard not to just sob my eyes out as I listen to stories that I can feel in my heart and bones, both because I share them and know many other friends who do, too, and because each one is still unique in a way that could only be delivered by one single individual. It was so, so sad to be watching along at home last year, included slightly, but still on the edges.

I thank you all for helping me get back to MedX this year, even in the midst of some unfortunate humanness on my part. Thank you for letting me help tell the story of invisible illness and include the first Skype patient panelist. Thank you quite literally for pulling together, even in pain, and making the effort for me. Thank you for showing up and making an audience of nearly all friendly faces (and some new faces that became friends). Thank you for the small ways you included me and thank you for the times you allowed me to help you. Thank you to the students who care enough to take part and hopefully will change the hearts and minds of their future colleagues. Thank you to the Pharma representatives from Eli Lilly who spent an entire day listening to what patients wanted – to our hopes and fears, even when those answers were sometimes things that would collapse their business model. Thank you to Dr. Larry Chu, Monique Chao and all the organizers and volunteers who work just as tirelessly without as much of the credit. Thank you to Liza Bernstein, Hugo Campos, Britt Johnson, Sarah Kucharski, Christopher Snider, and Nick Dawson who is the reason I even knew MedX existed. Thank you to the people from the diabetes online community for allowing me to ask a million questions about their disease (and science, and Facebook), and tell people how awesome you are, and accidentally hit you in your sensors because I talk with my hands way too much (accidents, I swear), and sit next to you while cramming food (and sometimes even glucose tabs) into my face nearly constantly due to the way my own body processes food, and not making me feel like a poseur or an ass.

Thank you to Kim Vlasnik, who agreed early on to be my roommate and didn’t leave me hanging to feel like the awkward kid picked last for kickball. Kim, gave a fantastic, powerful Ignite talk, but that was always a given for those of us who support her. No, Kim actually performed some of the greatest feats a human can when she woke up extra early (and skipped walking for coffee at Philz) to ride the shuttle with me so I could make my photo call time at an hour when many were still in bed, because she believed in the “buddy system” which is not actually about safety, but about love. Kim also did an amazing job getting me through a seriously terrifying drive to the airport, when my body decided to really go for broke on the classic Crohn’s disease symptoms, duplicating conditions that actually triggered my PTSD in 2005, and being awesome enough (along with first time ePatient scholar Nisha) to understand without explanation that this was not the time to ask questions and instead talked about her baby and dog and wielded a Google-maps-equiped smartphone like a ninja.

I apologize to the people I did not get enough time to talk to. To the friendships I was not able to cultivate, to those I was unable to support, and the person I hugged even though she does not like hugs. I regret that I could not drink a Diet Coke and make the pain stop, for myself (having physically injured my shoulder to the point that I was eventually forced to ask for help that couldn’t be given) and the person who so deeply felt the pain in those he was there to help.

MedX is awesome, and wonderful, and soul crushing, and leg-breaking, and painful, and uplifting, and challenging, and surprising, and inspirational, and friendly, and intimidating, and exhausting and like living an entire lifetime in the span of a few days. It’s something I both feel like I will never be prepared for, but that I also feel like I was born to do.

Sort of like life itself, I realize now, after two trips and three years: MedX is worth it.

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4 Responses to Medicine X 2014: It’s Complicated

  1. […] From an epatient with Crohn’s (@ChroniCarly) […]

  2. Heidi Kaplan says:

    Carly the way you write and express yourself is a gift. You transport a person who wasn’t even there and make them ‘feel’ the experience of MedX. That is a gift of a true writer. Your skills, talents, drive and passion is so evident in everything you do.

    I know you have heard this many times before – YOU ARE AMAZING! You are one of a kind and you are making a difference. Love you and so proud of you.

  3. […] X 2014 several of which also talk about the safe environment of the conference, such as the ones by Carly, Kim and […]

  4. From this newbie’s perspective you looked very much part of the MedX family Carly and you looked stunning btw on stage!