Interesting thing about chronic illness.... it's chronic.
Back in the Fall of 2009 when my colleagues decided to hold a fund raiser for our family, it was decided that a web site would be the best way to advertise and keep people updated. They were right. At first the site was dedicated to telling my story, getting information out and providing a means by which donations could be made. The idea proved successful, and by December there had been a benefit held and enough money donated to get our family through the long and difficult journey of applying for disability.
As the weeks and months progressed, the website began to take on an entirely new purpose. At least for me. Most of the website remained unchanged - my original story, pictures of the benefit, links to contact me and so on. But one page, the Latest Updates page, took on a life of it's own. With the help of my IT savvy husband, I quickly learned how to add updates, download pictures and post to the web. Now this may seem quite simple in light of blogging technologies such as the one I'm typing to you on at this very moment, but coming from a background of Microsoft Front Page, things were a little bit more difficult. You practically have to have a degree in programming just to open a file. And if I wanted to download a picture...well, that took pure luck. Sometimes it worked, sometimes it didn't.
This is where the "chronic" part comes in. Those of you that have had any experience with chronic illness know that moving from acute illness, to diagnosing, to "this is the way it's going to be...forever" is a road filled with steep hills, low valleys and some of the longest stretches I've ever run. It's like mile 20 of a marathon - wavering between a type of tenacious numbness, euphoria and blind hope. The road isn't just long - it never stops. And other than a gut deep desire to move forward, nothing moves me more than the cheer of family and friends along the way. That's what the website became to me. A means by which I could share my journey, and with the click of a mouse, comfort surrounded me from all over the world.
So why the blog? Well, leave it up to a teenager to send me fingers first into the newest form of social networking. "It's so easy! You should try it, Mom!" "You can do so much more!"
Of course, I held back at first. It's hard learning new tricks. And for me, living most of my days in a thick Lupus brain fog, it's scary. Not being able to learn like I used to is like a big neon sign reminding me of what I've lost. But slowly, in the quiet of my bedroom, with everyone gone, I learned the basics. Without telling anyone. In fact, as I type this, they still don't know.
But you know what? As usual, I think she's right. My beautiful Anna has taught me once again! And I'm looking forward to the continual metamorphosis of the idea my friends began over two years ago. The gradual moving from "Latest Updates" to more of a shared journey.Where the day to day, moment to moment finds its way onto the screen and into our hearts. Connecting us by the thread that binds us all...