One month ago, I had spoke, along with Tiffany Peterson (@TiffanyAndLupus on Twitter) at #140conf12, about how we find and share meaning in the "State of Now" within the Lupus community. Our talk was titled "Lupus Chat, Lupus Style at the #140conf12--or ,for those who tweet, "#LupusChat #LupusStyle at the #140conf12 . ( The reason these posts about my NYC conference experience aren't as timely as I would have liked is because I pushed my body to the limit and then Lupus made me pay for it; more on that later.)
The "State of Now" conference engagement starts long before the actual speakers take the stage at the 92nd Street Y in June. First things first: I submitted a panel proposal to Jeff Pulver (who created and curates the "State of Now" (aka: #140conf)) earlier this year. After waiting for what seemed like forever--but in reality was only a few weeks-- to hear back, I finally got the confirmation that the Lupus panel had been chosen to speak at the conference. Excitedly, I let the other panelists know that we had been selected. With a few months to plan, I knew that I wanted the panel to share by example how the Lupus community supports one another.
That's when plans were made for me to travel across the country to be in New York City for World Lupus Day on May 10th. Two days later, the National Alliance for Lupus Research Walk with Us to Cure Lupus event would be held in New Jersey. Not just in New Jersey but at MetLife Stadium--the home of the New York Jets. I asked the other panelists to join me and take a walk in New Jersey. It was more than a month before the #140conf yet it was during my trip to NYC to celebrate "World Lupus Day" and the Alliance for Lupus Research Walk with Us to Cure Lupus that the panel changed. (Living with Lupus has taught me resilence and flexiblity!) Tiffany and I were celebrating the fact that we were together; despite the chronic pain and challenges we face every day living with Lupus, we made a point of choosing to accentuate the positive and eliminate the negative.
Many "moments" happened during the day, from receiving VIP seats and access at The Wendy Williams Show to our lunch at Joanne Trattoria (named after Lady Gaga's Aunt Joanne, who had died of Lupus) and later attending the "Collaboration for the Cure" reception honoring the researchers and Scientific Advisory Board of the ALR and even being taped about how the Alliance for Lupus Research is leading the way to promising advances in Lupus treatment. It was late the night of May 10th, while relaxing in the hotel room at what we called the #LupieLoveSlumberParty and talking about the amazing moments of the day, that the panel changed. After not replying to emails or DMs for over a month, the other panelist told us that she decided she would not be joining us on stage. Remembering the part of the day where we were talking about how we need to focus and "accentuate the positive and eliminate the negative", Tiffany consoled me with a hug and support. Moving on...
Next, nerves set in. I was nervous--not nervous about what are we going to share but what were we going to wear? Thankfully, Karen Kane chose to sponsor the "Lupus Ladies" by providing us with two outfits each, one to wear to the cocktail party and another to wear on stage at the conference.
Tiffany (@TiffanyAndLupus) looking fabulous in Karen Kane (We love @Karen_Kane !)
The VIP/Cocktail Party for the #140conf12 held at Brick NYC was unbelievable. The avatars I had come to know as part of the community were alive. If you know Jeff Pulver (@JeffPulver) one of his favorite sayings is that "hugs are better than handshakes" -- hugs were plentiful that night. I reconnected with familiar faces and friends like @GeoGeller and @AlanWeinkrantz while meeting new friends like Joe Cheray @wildheart4vr , Jodi Sonoda @KarmicEvolution and Tiffany LaBanca @TiffanyLaBanca - you should know now that Tiffany LaBanca and Tiffany Peterson each had not met another Tiffany until that night. Have you ever had the feeling that even though I just me this person, our lives are now and forever intertwined? That is what happened as Tiffany, Tiffany and I met. We were starting to form a lifelong friendship, right then and there. Over pizza, in the warmth of the overheated restaurant, our connections were building and taking root. Jeff Pulver has an incredible way of changing lives; putting people in the same room and letting serendipity take over.
I had to get some air, so I went outside. On the sidewalk in front of Brick NYC I saw her. I knew she would be there, but in the #140conf community and to me Becky McCray is an inspiration. When I saw her (@BeckyMcCray on Twitter) I started swearing "You are Becky F8cking McCray!" I kept saying it over and over; I couldn't believe that I was in NYC and Becky McCray was here, too! The moments and connection that occur in person can never be fully replaced by Social Media. No matter how good a "virtual hug" feels, one that has an actual squeeze involved is so much better. As the cocktail party wound down and the car taking most everyone back to their hotel (in Queens of all places), It was time to find Tiffany (Peterson) and make our way back to the Hudson Hotel (@HudsonNYC), my New York City home away from home.) for another #LupieLoveSlumberParty.
That was the night before the #140conf12, Monday night, June 18th...