Odd Friday Lanyard Workshop is with the Phi Theta Kappa Honor Society at Blinn College tomorrow at noon!
The semester piled back on me as soon as I got back from DC. It has me by a choke hold and will not let up for several more weeks, even if I say uncle.
Which makes my trip to DC last week even sweeter.
Believe it or not, we got all 46 attendees and three organizers of the PAC2 workshop into one (not so perfect) photo. This group represents the diversity and huge hearts that make up the childhood cancer community who met to figure out ways that we could help each other out. You will be hearing more about this from me (I guarantee).
Not everyone I have ever wanted to meet from the neuroblastoma cyber world was there, but folks, you have to believe me when I tell you how meaningful it was for me to be sitting along the NB Stretch of the Table with Meg Lawless Crossett (Rachel), Caryn Franca (Nick), me (Erin), Mickey Johnson (Cody), Gavin Lindberg (Evan), Jay Scott (Alex), and of course, Andy Mikulak (Max).
The potential to do even greater things than we are all doing individually is at hand. We discussed ways to tap into meta-messaging, especially during September's Childhood Cancer Awareness Month and attempted to identify other ways that we might weave our organizations together through sharing data on childhood cancer, creating a collective events calendar, and building templates to learn from each other.
For all my Erin's Dream Lanyard volunteers, as a symbolic gesture or our willingness to find ways to support mutualism and collaboration, I donated a lanyard to each of the participants, and let me tell you, they were universally admired! I can't give you enough compliments on how beautiful and meaningful everyone found them.
I wanted to tell you about this workshop and about my thrill at meeting so many people I have only known through the internet before I told you about another, darker thing.
About two months ago I got a call alerting me that Erin's photos and bio had been lifted from this website and that someone had created a new person called Erin Jaxyn Nalley, who was in fact my Erin and your Erin. Two Fridays ago, a Louisville, Kentucky detective squad arrested a woman named Crystal Vanarsdale on eight counts of identity theft.
This is how she looked when she was perpetrating the crime.
This photo comes from her fundraising website for Kosair's Children's Hospital, where she claimed to be a childhood cancer survivor:
"I was diagnosed with Acute lymphoblastic leukemia just 6 days after my fourth birthday. Since then I have endured seven very long years of Chemotherapy, four different clinical trials, 126 days of radiation, two bone marrow transplants and a stem cell transplant, over 300 blood transfustions, have swallowed more than 30,000 pills, had 17 surgeries, and have spent 958 days in the hospital."
Having survived such a horrific experience supposedly made her a true hero to many children who now were fighting their own cancer battle. This young woman then stole the identities of at least eight children (including Erin) with a range of ages, diagnoses, and prognoses, set up facebook accounts for them and posed as each one, luring followers into their stories. She killed off Erin on November 30 last fall and buried her in Tiffin, Ohio.
This is what she looked like in her mug shot. Not nearly so carefree and happy.
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Now you may understand why my posts have spread so far apart lately and why my words haven't reached their full wit and sparkle potential either. It has been very difficult to make sense of this sad and sick situation. On the one hand, I am appalled someone would claim the rigors of treatment our children experience just for fun or glory or status or as a game. I hate that someone captured Erin's life and claimed it as their own. I resent the plagiarism of my own descriptions and stories.
In some ways, we set ourselves up for such a situation. Everything that was stolen is in the public domain: all the photos, all the stories, all the biographical detail.
And frankly, I wouldn't have it any other way. How else would I know the lovely, talented, beautiful friends I have made from around the world if I hadn't been willing to trust the internet with Erin's story? I have become connected with so many people and learned so much from them (I'm talking directly to you right now!), that I am willing to make that trade. I am also willing to accept that a young woman, sad in so many ways, needed Erin as an avatar. She's who I would choose if I needed to create someone to inspire others.
And so, in the end, each of us with blogs and caringbridge sites has to face whether it is worth exposing ourselves and our children to the Crystal Vanarsdales of the world. I, for one, am glad that the folks I met last week shared their children with me through the internet, even though I didn't know them. I am completely richer for the experience.
P.S. If you are Facebook friends with Crystal Vanarsdale or her alter ego Kylie Celeste Krause, I would be very careful!