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Cystic Fibrosis Sufferer’s Vote And Why

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Let’s get one thing straight; real straight. I have avoided anything oriented to politics this election season; you have not seen a blog post about political leanings or who’s getting my vote. I’m not brave enough, but one of my friends is. If anyone so much as disrespects her for her views on this blog, I’m gonna come find you.

Jenn Whinnem and I go way back to about 2009 when we met on Twitter and I got to meet her IRL twice. She informed this community in a guest post here that she has cystic fibrosis, a chronic and fatal disease for which there is no cure. To live beyond mid-life, she likely will require a lung transplant. What that also means is her medical care on a daily basis is exorbitant.

Listen to her story here, and in the spirit that is this community, I beg for your respect for one American’s perspective. It may not be yours, but it’s hers, and whether or not I share her view is my business.

I will always be a member of the Jenn Whinnem fan club. She’s an amazing writer, a strong supporter of anyone on the Interwebz, and she has enough quirkiness to make me shake my head in amazement and say, “Atta girl!”  She speaks her mind, has strong opinions, and is very good at what she does. I consider this house her blog when she wants a forum, as she has no blog of her own.

If you have something positive to share, please do so in the spirit of ‘raderie and support. If you feel like bashing, please go elsewhere…thank you, kindly.

Here’s Jenn…

 

How Much Transparency Is Too Much?

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My pal I miss so much because she works full time and can’t banter with the best of us has decided to visit here again with a spot-on GP (that’s guest post). Please welcome a familiar face from this community and someone I love dearly, Jenn Whinnem (who recently tied the knot in ever so much secrecy without inviting us to the party; look there she is on her special day!).

Jenn Whinnem says:

I lost my glasses recently. They were either in my home, or at the lake on the property. Several searchings of both turned up nothing. Until, a week later, one of my neighbors turned up with the glasses in hand! “My granddaughter found them while she was snorkeling,” she said.

Yes, dear readers, I went swimming with my glasses on. How on earth I managed to do this is still making me worry about my brain.  Now the lenses are foggy and I need new ones.

This, and , got me thinking about transparency. Please note upfront: I’m not in the habit of blaming the victim, ever. It’s simply not on his account. I’d wager that someone is very sick, but I’m not qualified to diagnose. Whoever this person was, they had a lot of information about Danny and his life. Danny has been pretty open about many of his life details (again, not blaming the victim). And that’s what got me thinking, again.

About two years ago, I wrote a post for Jayme about having cystic fibrosis. Jayme had asked me to write it, and I wanted to help out a friend, forgetting that the internet is mostly not a secret place. That post ended up getting much more traction than I intended. Usually I don’t make that information so public, because I worry it will prevent employers from hiring me. An ugly reality.

Since sharing that, and worrying about the repercussions, I’ve been careful with what I share. I don’t mind telling you a story about swimming with my glasses on, as bone-headed as that makes me seem, because I think it’s funny, humanizing, and something others can probably relate to. Not many people are going to use that against me for anything other than a joke at my expense.

I read a post a few months ago where someone used the Batman/Bruce Wayne example to discuss how, thanks to the internet, nobody gets to have a secret identity anymore. (A Google search is not helping me find this post, because apparently there is a song called “I am not Batman.” If you know it, tell me, I’ll update the post). I vehemently do not agree. I advocate for a persona, and for never confusing the persona with the self.

Back to those glasses. I can see through them, but they’re just blurry enough that I really shouldn’t drive with them on. They’re a great model, though, for the kind of transparency that makes sense on the internet.

Soulati Media On The Street With Jenn Whinnem

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The last in the series of Social Slam 2012 videos is here, front and center, with Jenn Whinnem, a member of this community and a full-timer at the Connecticut Health Foundation where she indulges in social media. Listen closely (my iPhone 4S was too far from her soft-spokenness) and she’ll inform you about how she made the transition from being on Twitter for personal branding to being on the Interwebz for business and her company.

The foundation she works for has different objectives than a pure not-for-profit; objectives about fund-raising are not what most in the non-profit sector are accustomed to. Jenn’s been writing a bunch to share that information with folks about her foundation; you can see her thoughts more here and here. So, tune in for a few minutes, and listen close!

Sunday Sweets With My Twitter Friend Jenn

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It’s not Sunday anywhere until Saturday, so #Follow Friday, @JennWhinnem.  She needs a little boost of support, love, encouragement, and friendship today as she manages a medical condition she rarely speaks about and you’ll never know she has (until you do).

Yesterday, Jenn sent flowers, and they were purple to match.  She knew someone had a broken heart, and she focused not on herself and her convalescence, but on someone else she knew needed a hug. That’s the most amazing gift one can give – generosity to others, focusing outward, and sending love when she’s the one who should be on the receiving end.

Jenn is one of those special friends who will make you laugh, make you think, and make you marvel at the quality of writing she shares with us on occasion. She’s a regular guest author here, and she’s graced the likes of Shakirah’s, Mark’s, Jon’s (and who knows who else’s) houses, with really cool pieces.

Jenn now works at the Connecticut Health Foundation as the communications officer where she’s implementing vlogging, social media, blogging, and a bit of PR, if I’m not mistaken. I’m missing her on the Twittersphere as a result of her recent gig, but I’m so glad someone is benefiting from her many talents.

I’ve often asked Jenn for her opinion about Facebook strategy and building out pages; if she didn’t know the answer, she’d go find it and send me a link – immediately. She seems to be in the know about the latest applications and will share with anyone who asks so they know, too.

I’ve never seen Jenn not smiling. Perhaps today’s gift in kind, Jenn, will ensure your pearlies are visible to those around you.  One thing is for sure, you’ve managed to be the most selfless person I know – putting me in front of you during a time when you should be first.