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iammarvincalderonjr · 9 years

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MedX 2015 - My Stories, My Highlights, My Thank You’s

“Why am I here... I’m here because simply, I like stories. I didn’t think my story mattered until I met people that showed me and reminded me that it did.”

That was part of my introduction at the ePatient orientation dinner the night before the first day of Medicine X 2015 commenced. Deemed as a MedX veteran since this was my second year as an ePatient scholar, one would think I was cool and collected. But I definitely had the “first day of school” jitters, the “new class” excitement, the feeling of wondering what was yet to come. The best was yet to come.

“I didn’t think my story mattered until I met people that showed me and reminded me that it did” -----I said as I glanced at Hugo Campos and Britt Johnson who ironically happened to be sitting at my table at orientation dinner night... who ironically are the two most influential people that helped me bring out my authentic self to share my story of music and dystonia during my ePatient Ignite! Talk last year. I wouldn’t have been the person that got to do MedX for another year, and I wouldn’t be the person I am today without so many people, especially the inspiration and push from Hugo and Britt. I was reminded at that moment I belonged.

My Highlights - in no particular order because they were all crazy amazing

On Caregiving, On Caregivers

One of the best gifts I have received from Medicine X is learning about caregivers and caregiving. I found myself emotional every time I heard someone talk about the trials and feats when it came to being a caregiver, and caregiving for a patient. I heard beautiful stories on peer-to-peer healthcare for elderly patients from Natrice Rese and caring for family members with ALS from Mary Collet and ALS advocacy during their ePatient Ignite! Talks. I also got to know the inspiring, hilarious, and overall awesome presence that is Danielle Edges, who is a mother and a caregiver for her daughter with complex congenital heart defects. I was moved by all their stories because this past year I have been learning first hand on how it is to be a caregiver. My Ninang Margie (“Ninang”- Godmother in Tagalog), my Mom’s older sister, had a severe stroke early this 2015 year. Before my eyes I saw a family member that I have known all my life drastically change. She lived in our home for ten years and so she has always been a special part of my family. Since February I saw what it was like to go to the hospital daily, to see her transfer from hospital to rehabilitation center, to back to the hospital after falling from the bed, back to a rehabilitation center 45-50 minutes away where I would drive daily after working an eight hour shift post-picking up my sister from school. It was meeting my Mom who was there practically daily. It was working with my family and scheduling rides and times. It was the days where I would sit at the table at the rehab facility and see the Occupational Therapist help her use a spoon to eat. The times I would help her get in to a wheelchair and push her so she wouldn’t be stuck in the room all day. Simple mouth exercises and speech therapy to help her talk again. This year was incredibly emotional for me. Months later and now in October 2015, I still see my Mom go to my Ninang’s five days a week----- to cook for her, to keep her company, to drive her places. And in between my work schedule I see my Ninang 4-5 times a week and drive her to the market or bank or pharmacy, buy her new slippers, to help her push the grocery cart. These moments that have happened and continue to happen are forever in my mind and heart. The stories from caregivers from MedX helped me with my story. They taught me to be patient, to be understanding, and to be motivating. I learned to be a caregiver as well. I also learned how to support other caregivers like my Mom. To simply BE THERE by their side can make a difference. Cheers to all the caregivers who change lives.

ePatient Ignite! Talks

The ePatient Ignite! Talks are my hands down favorite at #MedX. They are fully from the hearts of the ePatients. I say this because I don’t know how many flashbacks I had to my talk last year when I’d meet an ePatient Scholar saying they’re on the presenter track, when an ePatient Scholar’s video would play, when I hear the voice of God introducing them, when they’d walk out from stage left, when they hit their mark in the center...... I felt for them. I knew the anticipation, the fear, the exhilaration, the joy of sharing your own story. Charlie Blotner, what an awe-inspiring individual. Charlie taught us about self-identity, gender, educated us on the trans community and whole-person health. The lovely Julie Flygare brought us into her world with narcolepsy, and tells us about her journey to bring understanding and realization, especially through NARCOLEPSY: NOT ALONE international awareness campaign and Project Sleep, both which she created. Cyrena Gawuga brought us down to reality but brought us up in hope as well----- with lupus and bipolar disorder she gave us the raw truth of what failure can do to us in life. Cyrena reminded us of the moments where we would cry and put our fists into the air in anger wondering “why me”. Cyrena kept it real but taught us that failure will not be an option and failure will bring us to something better. Andrea Downing blew me away hearing her story as a BRCActivist and her story of having a BRCA1 deleterious gene mutation passed down in her family. We were friends on Twitter already since last year and got the chance to chat this year, especially on the shuttle on the way to the conference. She told me about her major risks for breast cancer and ovarian cancer and told me about how her human DNA was not accessible because it belonged to someone else. Insane. It was crazy for me to put myself in her place and think that somehow my DNA and my own personal health information belonged to someone else. She shared about how she stood at the Supreme Court steps and the case made history when the right to patent human DNA was overturned 9-0 by the Supreme Court.

Abby Norman - The sisterhood of the traveling endometrial tissue

All the words in the world cannot fully explain the unforgettable Abby Norman. After a crazy long Saturday of MedX what an absolute perfect way to end the day by hearing Abby Norman’s story (my tweets during Abby’s presentation clearly showed my extreme excitement and how engaged I was in her story). Eye and ear opening, heartwarming, hilarious, the right amount of awkward yet relatable....it was perfection. Abby openly shared her five year journey with endometriosis and appendicitis, deeply Google-ing and self-educating, while throwing in a dash of Barbra Streisand to some fancy pictures of her uterus. Mind you the images were not for the faint, and mind you I AM the faint...... but Abby Norman is just so cool and draws you in, I suddenly found it okay to take a look at her cyst and her uterus without falling to the ground.

“Sometimes it feels like we’re screaming into the void. But sometimes----- the void is where we are finally heard.” - Abby Norman

I was so lucky to be in that classroom to hear Abby speak. I was moved, inspired, and for that moment I was a 25 year old man wanting to be an #endosister just so I can be bffs with Abby Norman and her squad. I tweeted that I needed Abby Norman to close out MedX day 3 on the mainstage for the opening keynote, closing keynote, and everything else in between. And I totally stand by that. I am almost certain we will be seeing Abby Norman on the main stage many times next year and years to come. Abby, keep on slayin.

Health and Community

I loved the Health and Community moderated panel discussion with Jamia Crockett, Alicia Staley, Gilles Frydman, Donna Cryer, and Pritpal Tamber.

“Communities have to serve a purpose. How do we as leaders reach out and how do we leverage?” -Donna Cryer

“What value are we providing and what problems are we solving?”

“You’re not sick enough. Come back when you can’t walk... come back worse, then maybe you can identify with us.” -Jamia Crockett on her first encounter on finding a support group for MS

Simply finding a need to get a definition of what community is really got me thinking. Pritpal Tamber told us that community is not about geographical code or location anymore. There are online communities that exist and thrive, and can be based on work, hobbies, ethnicity and nationality, and more. What stood out to me was him saying that “how active it is comes down to how much is wanted to be done and WHAT is wanted”. Powerful....because these outlets exist, but it is up to us to use it to it’s full potential.

Behind Closed Doors

A breakout session with Christopher Snider, Britt Johnson, Joe Riffe, and Matthew Dudley was one of my favorite sessions to attend. On the psychosocial and psychological ramifications of living with chronic illness, on relationships with “healthy” friends, family, intimacy, caregivers, patient burnout.... I was definitely engaged and fascinated at how much I can relate to the stories and feelings that this panel provided. From food, medication, social media stigma, work, mental health, stereotypes and more, it was filled with relatable information and stories as a patient with chronic illness.

Britt Johnson mentioned how someone at a market asked her “What’s wrong with you?” because of her chronic illness. I sat in that classroom and I had a flashback to when I was at a store ready to pay for groceries and the woman at the register did the same exact thing. With cervical dystonia, comes contorted appearance, sometimes fair, sometimes very noticeable. I remember how she also said “What’s wrong with you? What’s wrong with your shoulder? Your neck? Fix that..you look funny don’t do that!” I remember how awkward and embarrassed I was.

Chronic illness affects us in so many ways, and it was good to know I wasn’t alone---- my experiences are shared with others, my pain is shared with others.

Matthew Argame - Neuroimaging pre/post hearing treatment

My incredible roomie this year, the awesome Matthew Argame, presented and told his story of living with hearing loss very early in life and just recently started continually using hearing aids. He shared about how his life has improved and how he is serving a purpose to share insight on being a young individual with a disability often connected only to the elderly. Matthew told us about the challenges with having hearing loss and the need to bring awareness and bring more work into hearing assistive technology and corrective hearing surgery. So proud of this guy because I spent a lot of time with him at MedX and the days that led up to day 3 when he presented. I remember Matthew saying that he hopes that those with hearing loss are able to easily get hearing aids exactly the way people can easily get eyeglasses for assistance with vision.

Britt Johnson on #ChronicLife -Redefining patient participation in social media

I have so much admiration and respect for Britt Johnson. This was my second year at MedX and one thing I did when I was scheduling out what panels to go to, what breakout sessions to attend.... I immediately highlighted anything involving Britt Johnson!! I knew anything involving her would be good stuff and I knew damn well I’m gonna learn from her. I look up to her as an advocate, as a mentor, as a person. We learned about the 48 hours of #ChronicLife, a hashtag movement to share the daily struggles of living with chronic illness, and it went from an introspective idea to a group of super heroes joining in. From pain to mental health, so many topics were talked about by all those who participated in #ChronicLife. One thing that stood out to me was how sometimes an advocate feels like they have to be positive and be a leader----- to be someone who always lifts everyone up in their community. Britt said sometimes it was difficult to tweet that she was having a bad day. But she shared that it’s okay and that it’s not always about perfection. You don’t have to filter yourself and you don’t have to always say everything is great. Because in real life it’s not. And that’s what makes us human. This is what helps us learn. To have empathy. To have understanding. Thank you Britt.

Reuniting and Meeting New Extraordinary Individuals

The people of MedX.... ugh.... one of a kind. I don’t even know where to begin with the people that culminate for the conference. Every conversation, every moment, every exchange... I will keep with me. I was extra happy to see some of my MedX family from last year and glad we got to experience another round together. Joe Riffe, my MedX brother... always uplifting and real. I still owe you a drink! Whiskey perhaps? Nisha Pradhan, you are another story my friend, hahaha. Me and Nish are always a dynamic duo------ being front row to watch your talk on patient participation increasing social performance for healthcare conferences, to afterwards telling you that you did great then you say you didn’t, then I say “actually yeah you didn’t, you flubbed your words a little I noticed, had some pauses too” to you smacking me LOL. Nisha I am still not over and will never get over your unforgettable MedX portrait a la Gilles, which truly brings out the true you (which I absolutely love, even if you wished for another shot lol). I will also never get over watching you not live tweeting for five+ minutes during a panel because you needed someone’s Twitter handle, then leaned over to ask me and I didn’t say one word because I all I did was look up to the front and the slide had EVERYONE’s Twitter handles in big font....LOL. And with Nisha, when ever I would see her, every single time, whether it is in inside the main stage hall or just walking by each other at the crowded hallways, she always checks up on me to make sure I’m feeling good. That, is what an ePatient friend is, and that, is what I love. Thank you Nisha. My Master Master Doctor, Leslie Rott, who is tiny (literally tiny as I teased her because I saw her feet dangling while sitting in the chair up front LOL. Love you Leslie <3) but filled with so much knowledge and so much to offer. Leslie has blossomed in to such a beautiful person inside and out and I’m happy we got to be together again this year. Chris Snider is always awesome from bow ties to gangsta faces to songs that came to mind during the Illness and Intimacy panel (Rump Shaker... I will never forget that). Sarah Kucharski...just knowing she’s around actually comforts me and makes me feel good. Marie Ennis O’Connor still as lovely as ever and loved hearing her in the CanSurround panel discussion on co-creating with ePatients at the intersection of cancer mental health and technology. Also in that panel was the loving Liza Bernstein, who I adore to the fullest and every hug from her equals everything good in life. Getting to fangirl (in my mind though...gotta keep it cool and not look crazy) and meet MedX superstars who I’ve appreciated after hearing their stories on their journeys to advocating for their communities and just their awesomeness like Alicia Staley and Emily Kramer-Golinkoff. Both made stunning ePatient Ignite! Talks in previous years and I watched their talks as inspiration when I did mine last year. Susannah Fox, who my best friend Nikki Estanol and I call the Beyonce of MedX because she’s just so incomparable, fierce, and powerful. I mean, when the Chief Technology Officer of the U.S. Department of Health and Human Services gives you a big hug and tells you her and her boys watched American Idol this season and got excited whenever they saw me.....man my life is complete. My sensational friend Denise Silber, the founder of Doctors 2.0 and You who never fails to bring a smile to my face----- don’t forget Denise we still must sing together! Justin Halls, who was killin’ it this year as the MedX interview host. Josh Harms, the man behind the lights and music and the feels inside the MedX conference, always a great time talking to you and hanging out with you. Britta Bloomquist and her sweet presence and sweet Minnesotan accent! The times I spent with Kirsten Schultz, Cyrena Gawuga, Danielle Edges.... priceless. Freaking priceless. Now I hear the beat of songs and I get a Unz Unz Unz feeling as Cyrena would show her killer moves with some glowsticks..... I love it. Charlie Blotner, you are meant to keep on doing great things. You are my boo boo and we have the same humor and the same jokes it’s too much for me to handle. Matthew Argame my MedX roomie, thank you for everything my dude. From talks on religion to worship songs, to not knowing if I should wake you up or let you sleep, to you saying it’s okay if I yell a little if you’re not wearing your hearing aids lol, to the airport craziness.... thank you for inspiring me. Me and you are both products of Nikki Estanol introducing us to MedX, so I definitely gotta throw in a shout out to Nikki who I certainly wished was there this year! And of course, the indescribable Kenzie Libbesmeier. Kenzie, an advocate for arthritis, and recently..... Cervical Dystonia. Sometimes even up until now I sit in awe of how blessed I am to have met someone with the same neurological disorder as me. It was the first time I really got to talk to someone face to face about the annoying pain, the same struggles, the multiple botox shots, the same feelings of the same chronic illness. Kenzie, thank you for reminding me that I am not fighting alone.

My Many Thanks

Thank you to the one and only Dr. Larry Chu, for being you. Thank you for giving me the opportunity to come back a second year and to witness another year of outstanding lessons and outstanding people. Dr. Chu, thank you for believing in something greater. I always hear Dr. Chu talk about how this is a place for all stakeholders. I remember before I was thinking “everyone here is a stakeholder... what am I doing here.... what stakes am I holding??” in confusion. You help me realize that an ePatient is a stakeholder too. I have an ePatient voice. Thank you Dr. Chu.

The ePatient Executive Board, Hugo Campos, Britt Johnson, Sarah Kucharski, Christopher Snider, Nick Dawson, Jamia Crockett, and Gilles Frydman.... you are all exceptional. I would not even be able to step foot into the Li Ka Shing Center for another year if it wasn’t for you guys believing in me. MedX is nothing without you all.

To the ePatient Advisors Alan Brewington, Meredith Hurston, Emily Kramer-Golinkoff, and Alicia Staley, you are remarkable leaders. You supported all of us ePatients in every possible way and you all rock. Stay amazing.

Thankful to one of my absolute genuine “keepin’ it real all the time” friends and role models Jamia Crockett and my awesome ePatient Advisor this year, my fellow ePatient 2014 Honor Roll member, the wonderful Meredith Hurston----- these two have given me insight and took the time to let me ask them for advice on my potential future career in Public Health and/or Healthcare Administration. Thank you for the information, the advice, and the push to leap into something exciting. I am grateful.

To all those that made MedX possible like Monique Chao-Norquist, Ravali Reddy, Dara Rouholiman, Joshua Harms, the volunteer staff, and SO MUCH MORE that I cannot mention all, from travel to schedules to the fluidity of the conference to the lights and music, y’all put in me in awe. You are all quite the team.

To the ePatient Scholars, thank you for being advocates and thank you for inspiring everyone. You all uplifted me and continue to uplift me. I continue to change for the better because I am part of the ePatient community.

And with that...

MedX was wonderful. And MedX taught me that there is more to come.

I’ll end with this:

My friend once told me “If I’ve ever learned anything, it’s that wonderful things that we can’t even imagine yet are waiting for us.” And with that, on to more wonderful things.

-Marvin

#medx #epatient #stanford #stanforduniversity #dystonia #arthritis #invisibleillness #medicinex #medicine #patient #centered

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