Tomorrow Felix and I will be married 13 years. While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend.
And as compatible as we are, anyone who knows us is aware that we are as different as day and night in so many ways. One of those ways is the internet.
I facebook. I blog. I Email. I communicate with people I know well, and people I have never met. He doesn’t. He communicates live and in person (and sometimes on the phone) with the small circle of people he loves.
In the world of digital footprints, I have to imagine that mine and Meghan’s are substantially larger than that of my husband. And with that knowledge comes the need to sometimes remind myself of what I already know – there is no privacy on the internet.
We live in a suburb of a big city – unique in the fact that 6 degrees of separation can easily be played – and usually can serve to connect “natives” in far less than 6 tries.
That means, that every post, every writing, every thought, every sentiment that I choose to make public will be read by people who know me, people don’t, people who like me, and people who don’t.
I have begun to “clean up” and clean out my private facebook account. Life is about balance. My husband wonders why I want to stay connected to people I don’t see or even know. Well, many of them hold a special place in my heart – whatever the reason. Many are very dear to me. But, some I really wouldn’t know if I passed them on the street. Do they care when my girl is at swim practice? Or that my anniversary is tomorrow? Or that we have a new church? Or a new school? The answer truly is – probably not.
So how does all this connect to Beating Cowden’s?
Well, here’s how I see it. I started this blog to raise awareness of a Rare Disease. – one that has changed my life and that of my daughter, and my whole family. I wanted to get the word out that this 1 in 200,000 disorder was wreaking havoc on our lives, and we are working to control it.
Then, as I became more educated, I wanted to expose people to the world of Rare Diseases. The reality that we are among the lucky ones has been a potent lesson.
I want people to know that Rare Diseases are not always visible. That even though we don’t “look sick,” the suffering is part of daily life.
These realities have made some people uncomfortable, and have brought some others closer to us. Lessons learned. Life changes.
So when I blog, I try to focus on my own experiences, but without fail they are intertwined with Meghan’s. What can I do to protect her? Not too much.
She wants this blog to continue. She is proud to be part of an awareness raising effort. So, I have given her editing privileges and the constant reminder that once I hit “publish” I can not take it back.
I think in some ways this level of awareness will help her – when she takes more control of her own digital footprint.
“Beating Cowden’s” is about our daily struggles – sometimes with doctors, our bodies, medical tests, surgeries, and just people in general.
I have thought so much about privacy, and how it is almost a work of fiction these days. I have worried about hurting people’s feelings on my private page – but I am starting to get over it.
If you make a conscious choice to put yourself out there – there has to be a purpose. And, you have to be willing to stand behind every word you type.
There is no privacy on the internet.
Beating Cowden’s will continue as a means to raise awareness of a virtually unheard of Rare Disease.
My own personal Facebook page will take a bit of an overhaul in the next few weeks.
Don’t take offense.
I am just getting our feet ready for spring!
beatingcowdens 