Last fall (2011) Trish put in an application to SXSW, the premiere interactive media conference, and they selected us to present a session entitled ‘Crowdsourcing Cancer Support: A Love Story.’ Well, we just came back, and it was a fantastic experience. There is a lot social media and crowd-sourcing techniques can do for cancer support – particularly with younger generations. More on that later…
Building our presentation, forced us both to look at the entire scary experience again. It’s been about 18 months since Trish had her mastectomy. Back then we (finally) got the good news that she was cancer-free (by any detectable means). She’s had multiple surgeries since then to improve the cosmetic appearance of her foobs, but for the most part we have been on the path to ‘normal.’
Re-living the cancer experience, as we built the presentation, was surprisingly painful. It shouldn’t have been a surprise, but the ‘return to normalcy’ is partly a mirage. We feel like things are better, and in many ways they are. But the hurt, fear and despair are wounds that take time to heal. We are definitely not ‘over’ it.
Kids start therapy
And it’s not just Trish and I. The kids have both shown some PTSD-likeeffects this year. Lily has had a higher rate of emotional breakdown (tears, ‘depression’, ruminating thoughts) this fall and after her teachers gently suggested counseling, we found her some therapy. She has quickly responded to it – we see much less of the anxiety-driven panic and sadness. She seems to be more her ‘normal’ self. She’s extraordinarily verbal and talk-therapy is right up her alley.
Emma has struggled with school, getting B’s and C’s when she can definitely do A’s. She has always been flaky and it’s her first year in Middle School, but we suspected that there is something else going on causing her to be challenged. We weren’t sure if she would want or need counseling, so we gave her the choice. After some very deliberate consideration, She decided to do it and really likes her therapist. I spend 10 minutes a day helping her piece together the fragments of her homework assignments, and she genuinely appreciates the help.
The cost of therapy is high, but we’ll manage it. It’s good for the kids to have another place to go to cope.
Meeting our best friends that we’ve never met before:
The highlight of SXSW was seeing our video gamer friends from Oklahoma and Texas. Five of them came to visit us in Austin – most going a long way to make the trip.
Meeting your ‘virtual’ gamer friends in real life is weird. Online you know a person’s voice better than their face. You know the sound of it, the inflections they use, the way they breathe. But you don’t know the face unless you’ve seen it on Facebook – but that doesn’t give you the kind of familiarity that meeting in person does.
So it’s odd, to say the least, to see people you know intimately but have never ‘seen’ them before. That first meeting challenges your social expectations – do I hug them like I know them? Or do I shake hands like acquaintances?
Unfortunately, Austin is raining and nearly freezing cold and our first night together is spent huddling outside in the rain as we wait for 2 hours for a table. It does give us a chance to catch up before we wolf down the meal.
Power corrupts, and Powerpoint corrupts absolutely.
Have you ever had to do any ‘office work’ with your spouse? A presentation or a proposal? Dante had a special level in hell for couples that have to create powerpoints together.
Trish and I have been talking about the concepts of ‘Crowdsourcing Cancer Support: A love Story’ for a long time. But getting it down on paper, with pictures is more difficult. She wants it to be more of a narrative story, I want to make it more analytical about the state of the social media marketplace for cancer suppport.
Of course the answer is to compromise, and we manage to get the best of both our styles into the presentation without coming to blows.
Cancerpalooza, Live on Stage!
It’s Saturday March 10th, 5pm, and it’s pouring outside Austin, TX at SXSW. Our presentation room is cavernous, and the 35 people spread out, making it look like very few people showed up. Some of our close friends are there, in the front row.
I had encouraged Trisha to wear a low-cut vest with no bra so everyone could see her new rack. It makes her uncomfortable, and she started out very nervously. But she quickly grabs the audience with some real tears when she talks about the fear of dying and leaving our kids motherless. Then she warms up and rolls along, telling stories and waving her Prada shoes that I bought her for a 1-year survival gift.
My experience is very different. Part of my job is doing business presentations and I’m always confident on stage. But I have a really hard time connecting with the feelings I had during the cancer. I think all my management presentation experience took over and made it hard for me to be ‘me’. I did find it really hard to talk about ourselves so much – it’s already self-indulgent to have a blog, but none of you paid $1000 to read this.
Afterward, a person from the audience told me he had to hold back tears. His Mom and Sister are going through cancer right now. Another said he would make more of an effort to support his mom, who also has cancer. One of our facebook friends says she is copying a bit out of our last slide on unconditional love, for her wedding vows. What a nice thing!
Has SXSW jumped the shark?
Yes. It’s over. Next question.
(I actually saw Fonzie jumping the shark, on primetime in 1977.)
Seriously, SXSW is like a young adult summer camp now. I suspect there are more booth babes than real innovative nerds. Most of the presentations I went to felt unprepared. Trish likes the futurist stuff but it’s stuff you can see elsewhere and it’s not really applicable, it’s more sci-fi-ish.
And how hard should it be to get some tex-mex or barbeque in Texas? We ate expensive Chinese and bad Italian instead because EVERY RESTAURANT IS COMPLETELY PACKED. (We did have amazing modern japanese at Uchi. It’s worth going out of your way to get there.)
I was never there in the heyday, but it looks to me like SXSW peaked. And to add insult to injury we had our credit card numbers lifted for the second year in a row there. Cash only from now on I guess. It’s nice that we got to present this and have a record of our experience.
Costa Rica Next
In less than two weeks, Creekmoreworld goes to Costa Rica to get the maximum adventure travel that country can offer. We’ll be surfing and jungle camping, trekking and enjoying the hot springs. It should be a blast. Trip itinerary up next.