(Since WEGO had a lot to do with the point of this post, I wanted to call it "Here 'WeGo' a-Wassailing"...but Shawn vetoed that on the grounds it was too corny to live.)
My mom always said I was her Francie, the main character in "A Tree Grows in Brooklyn" (read about the book here). Determined to end up with the life she wants regardless of the one she starts out with, Francie bears a lot of responsibility for a lot of people. But, Francie finds an escape. She learns to read:
"From that time on, the world was hers for the reading. She would never be lonely again, never miss the lack of intimate friends. Books became her friends and there was one for every mood."- Ch. 22
I've always been a voracious reader. I credit my Pop-pop, who spent hours with me on his lap reading about Snuffy on Sesame Street, puppy dogs who got in trouble, and an alphabet book with an awesome jello mold (followed by a persuasive appeal to my mom to make some for us). I still remember how proud I was the day I climbed in his lap and for the first time, read to him. Over the summers, I would get the reading lists for other grades and see how many I could finish before September. Books got me through a phase where I was sick of happy endings...and other books stepped up when I was ready for them again:)
But books aren't the only things to read. I was never that into magazines - too many ads, for one. And forget newspapers (the folding and unfolding and noise and ink and smell - it makes me sneeze). But the internet...now there's a happy medium! Shorter than books, but if you think about it, links are almost like optional chapters. I mean, if you WANT to read more you can follow link after link after link, but when you're ready to stop you can do so without feeling like it's incomplete.
Then there's the real kicker - books, by the time you read them, are a done deal. The plot's been resolved, the characters have run out of life, and frankly the best ones leave me deflated knowing there's no more to the story. But the internet has BLOGS - which are by and about LIVE people, who exist NOW, whose lives are ongoing stories with twists to come so great no human author could have fit it all into a 'book'. Bloggers are my PEERS. They tell me their stories...and sometimes listen to mine...and then something never before seen in the history of the written word happens - our stories morph. They piggy-back off each other, and eventually become intertwined. There's truth in the line from "Wicked": "Because I knew you, I have been changed for good". Whether we support, anger, respect, or despise each other, we have had an impact on one another and anyone else who may have stumbled into our "storylines".
Which brings me to Friendships in Philly. If ,because of reading, books themselves became Francie's friends, it was reading that has begun to open a new world to me as well, centered on blogs and social networks. I began blogging for Invisible Illness Awareness Week 2009 (as per my first post, here), which is a national awareness effort pioneered by Lisa Copen, Founder of Rest Ministries. Lisa's annual event gave me the opportunity (and push) I needed to get off the ground. Right away, I stumbled across Julia, author of Reasonably Well - and I truly know that "because I know [her], I have been changed for good"! I see Julia as a more experienced and (believe it or not...) calmer, more peaceful version of myself (or at least who I want to be). I'm sure right now Julia and her loyal friend/companion/guardian Therese are already laughing at that concept, but believe you me - Julia's craziness is educated and responsible...mine, not always so much. But, I suppose that's what 'disgusting youth' will do to a person...but I digress:)
Julia blogs about everything - and never makes me depressed. Aside from her downright endorphin-inspiring recounts of BICJ run amok, schnauzers in control, and surprise appearances by cooked baby octopus, she manages to talk about problems without dragging you down. There's the middle ground posts - for example, escapades that are actually the product of brain fog that are presented in a way that makes the problem relatable but the outcome laughable. And even when RN Julia makes an appearance with scholarly articles about scientific studies of causes, treatments, and disease progression, I still feel that life is worth living. If it weren't for Julia, I guarantee I wouldn't still be blogging. And I'm thrilled to still be here because I've continued to meet amazing women in many stages of their lives, all willing to share their successes and mistakes as well as my emotional lurches!
Eventually, the social network effect introduced me to a woman who pulled me into a new network and a new title - WEGO Health is what I describe as Facebook for Health Activists (wadda ya know, I'm a Health Activist). Here, ambitious, bright people with any and every medical background imaginable electronically congregate with amazing results! Through my involvement with WEGO, I've already been given the opportunity to participate in a live panel in just a few weeks...and perhaps even more valuable to this Little Sjoggie...they brought my Julia to me:) Miss Julia (with unofficial life coach Therese) came to my dear Philly to shoot a special feature with a world reknowned Sjogren's expert (and one of my former doctors)...you can read more about her project at her blog linked above. After learning so much about each other through our blogs and other communications, we simply had to meet.
Before I knew it, this woman who existed only in my virtual world, who I abstractly knew really lived 3,000 miles from me but had never, ever imagined I'd meet, was in the middle of my stomping grounds. As usual, Julia had the perfect plan- we would all go to mass together then sup while pheverishly cheering on the Phillies! There's not much I'd rather do than share my beloved hometown church and head out to enjoy the game...even if Julia and Therese had the unfortunate luck of finding out what a true Philadelphia sports fan feels like when our boys narrowly lost the series.
I hope you'll indulge me for just one moment of sappiness...Shawn and I picked up our guests at their hotel in the city. I walked into the lobby and on cue, a dark bob popped out of a hidden corner of a sofa in the lobby...a smile spread across her face...and I swear it was one of those moments straight out of the movies. I finally got to see, in real life, this woman I was sure I already knew, and I surprised I managed to not cry. (And for the record, anyone who could pull off passing for a 30-something when I also pass for the same age group has a lot of nerve accusing me of 'disgusting youth'.)
Anyway, within moments the four of us were off and rambling, cramming as much bonding into a few hours as humanly possible. I learned so much from these two travellers - about them personally, their families, and technical information on everything from medical facts I should know to swapping awareness ideas. I suppose it's true that an age gap among us exists...but no one would know it. I'm sure our waiter assumed we're all friends perhaps from work or just close neighbors, people who have grown togther through shared proximity. Only we knew the far more amazing truth, that it was not proximity, but shared experiences that brought us all togther. Experiences, Sjogren's, the web, and of course God (all the more reason praising Him together was the perfect way to kick off our night)!
Granted, I am sad that I had to return Therese and Julia to their hotel and allow them to soar away. I would much rather that they would have been so captivated by the Philly suburbs they'd insist on moving here immediately, and send for their husbands to pack everything while they went house hunting:) Let's face it, I like having people close by! But I learned something so significant from this whole experience that it turned my potential depression into a minor buzz-kill - these women are real. They exist on this great big rock in the universe, just like me. And if they could get here, I can get there (or we can all get to a tropical resort serving mango margaritas and lemon drop martinis...not a bad plan if I say so myself...). And, if they could be brought to my doorstep as easily as a much-anticipated Amazon purchase by the grace of WEGO...well, the whole world is open! I'm going to that conference...I wonder who else I'll meet there! Maybe I'll meet someone down the line through WEGO or another effort that I didn't even know online before, and the whole thing could happen in reverse! It's amazing to me, there are opportunities out there I hadn't even imagined.
"Growing up spoiled a lot of things" (ch. 28) for Francie. In many ways, I can relate - major bills, family planning, life-altering decisions, and of course progressing chronic illnesses can make you feel this way. But if Julia can have such a vibrant life, full of friends, family, optimism, fun, and new opportunities every day, so can I.
Ever since being diagnosed, I've had a firm view on life. I want to have as many experiences as possible - to learn and do and feel everything I can. So I guess, I really am like Francie:
"Let me be something every minute of every hour of my life. Let me be gay; let me be sad. Let me be cold; let me be warm. Let me be hungry...have too much to eat. Let me be ragged or well dressed. Let me be sincere-be deceitful. Let me be truthful; let me be a liar. Let me be honorable and let me sin. Only let me be something every blessed minute. And when I sleep, let me dream all the time so that not one little piece of living is ever lost." (Ch. 48).