Some of my biggest supporters and some of the most brilliant minds in healthcare leadership were in Palo Alto over the weekend participating in the MedicineX conference on Stanford campus. They are not physicians or researchers and they are not far flung family and friends. They are fellow empowered and activated patients who have collectively provided me and others with 24/7 access to emotional support, answers to a variety of questions no one seems to ever talk about and inspirational guidance by example.
MedX has for several years now, flipped the traditional healthcare conference model on its head by not only inviting patients to attend but making them the focus of the event. While I applied for ePatient status and scholarship through MedX, I was not accepted and, while I would have more than loved an opportunity to participate fully in the conference, I believe I was honestly more dismayed that I would miss an opportunity to meet a handful of these incredibly special individuals.
You see, I am a scant 20 miles away from the Stanford campus and I travel there frequently. In the middle of Silicon Valley, 20 miles should not be a barrier. Ever. I can walk that far. And, if I didn’t want to walk, I could take a train.
Fortunately (for me) I own a car.
So I seriously considered driving up to the Stanford campus, stalking out the conference and hoisting a sign that said, “Anyone have an extra ticket?”
Suffice it to say, I was not dissuaded from such activity. In fact, I was encouraged by the same group of brilliant rabble rousers I was so eager to meet in person.
Our family had a full calendar of weekend commitments but, determined to make something happen, I began the process of direct messaging those headed to Palo Alto. My plan was to head up Sunday afternoon (at the end of the conference) and see who I could see before they scattered.
Janet Freeman was first on my list. I have been desperate to meet @JFreemanDaily for awhile – if only to give her a long overdue hug. Through her tweets, a few emails exchanges and some blog entries, Janet has inspired me to look deeper and try even harder to bring empathy to the world. She has shared my blog, supported me in a Tweetstorm and basically epitomizes why I am so passionate about cross cancer support and de-stigmatization.
Unfortunately, after a few exchanges, it looked like Janet and I were destined to miss each other again (We had a failed face to face in Seattle earlier in the year). I wasn’t available on Friday or Saturday, she was unavailable on Sunday. We will both be in Denver late in the year and I was somewhat resigned to the fact that I would have to make do with that.
But it was a Friday afternoon Direct Message from @anetto that made everything possible. Annette had an extra band for the Saturday evening cocktail party and asked if I would be interested in attending. Interested absolutely. Logistically possible? Well… good thing I’m a fast driver.
Our family left the house at 7:15am on Saturday morning to head to Orangevale, California for a bar mitzvah. Three hundred and eight miles, and over 10 ½ hours, later I pulled into a PERMIT ONLY parking spot outside the Li Ka Shing Center for Learning and Knowledge on the Stanford University Campus. I did some mental math on the going rate for parking tickets these days and decided the price for my un-permitted parking would be absolutely worth it.
As I walked toward the balloons and streamers, I felt more and more like a party crasher. Perhaps the most striking reality was I knew very few real names and, unless the Twitter profile picture is a good representation, I had absolutely no idea what most of these individuals looked like.
So, like any good party crasher, I decided to wing it!
Annette saw me before I saw her and we greeted each other with a hug. Then Janet appeared and I was able to share a hug with her as well. Almost instantly I felt I went from party-crasher to part of the party.
|@coffeemommy @anetto @jfreemandaily|
Photo by @abrewski3010
If you don’t have an online support system, it may be difficult to understand just how important these relationships are to me and how truly excited I was to meet these individuals in person.
@JBBC: I think I heard Marie Ennis-O’Connor before I saw her. She talks like she tweets: assertive, compassionate and lovely. Marie lives in Ireland. Yet, as I explained to nearby MedXers, Marie was one who, “supported me when my expander exploded.” She not only personally buoyed me via Twitter and the blogosphere; she put the call out to other women who came out of the woodwork to share their experiences with me.
@itsthebunk: Liza Bernstein was next. I’ve seen Liza on a couple of #MedX hangouts so spotting her was easy. Liza was all the encouragement I needed to apply to the MedX ePatient program. She is the best mix of sass, sarcasm and sincerity and an individual I know I will spend more time with.
Although I felt ironically comfortable, there were a few awkward meetings. Take my meeting Gonzalo Bacigalupe @bacigalupe for instance. He was absolutely recognizable to me yet I knew him only by his Twitter handle which is evidently his surname. Surprised as I was, I checked his badge to confirm my suspicions and my first words were “I didn’t even know you had a first name!”
I said that.
(If he was offended, he didn’t show it and ended up taking a couple of photos for me. Unfortunately for me, I didn't get him on the other side of the camera!)
|@coffeemommy @JBBC @anetto @womenofteal|
Photo by @bacigalupe
In the MedX melee, I also briefly met @nickdawson @iam_Spartacus and @HurtBlogger. I met @givoly/@medivizor and a half dozen people I didn't even know via social media before I showed up on campus. Some knew me, some did not, some were no doubt overwhelmed and exhausted after a couple of days of conference. After the event, Annette and I had a spirited conversation with @justagoodlife and @abrewski3010 around the hotel pool. Again, more spirited conversation between people that don't just want to see the change, they want to BE the change.
I traveled home exhausted and grateful for the several hours I was surrounded by people who knew me and understood me before they ever saw my face. Many of these individuals know some of the most intimate details of my life and have been nothing but supportive.
On Sunday morning, I participated in the #MedX Twitter feed while waiting for Janet to present via the live stream. In the actual conference room, there was evidently mention of the opposite of personal privacy being vulnerability related to the sharing of conditions.
I thought about the comment and then I had an opinion:
This = Truth! But vulnerability allows for community support! MT @StanfordMedX Comment "Opposite of privacy is really vulnerability" #MedX
— Stacey Tinianov (@coffeemommy) September 7, 2014
Then I spent a moment being grateful for that support.
As a part-time, virtual participant I did not get the full MedX infusion.
But I got enough to make me smile on the inside and the outside and to inspire me to continue to push for and BE the change I want to see.
There are people I am very sad to have missed in person but that only means one thing, I will be back there next year – officially or unofficially!