If your are reading my words on a computer screen, then you are already in the majority of people who have access to the internet. Most likely, you send and receive email, and probably have visited (either sporadically or regularly) a chat room or two – maybe even cf-related. Maybe you’ve bookmarked some health related websites, as well as cf-specific sites (maybe even Breathing Room)?

That Human Connection

Grief and Hope Connect us Online. This is the title of an article I’ve been reading by Derek Powazek (http://designforcommunity.com/essay3.html). It’s a great essay – and a sound concept – that in our modern times, we can turn to the internet to connect us technologically in order to connect us emotionally. Derek’s essay revolves around the Sept. 11, 2001 attacks and how websites and chatrooms helped us “check in” from thousands of miles away, and make that all-important human connection in times of crisis.

Of course, Derek’s essay made me think of our own cystic fibrosis community – and how we could, as well as how we are, making use of this technology to reach out to one another, and keep connected.

People with cystic fibrosis number approximately 30,000 in the United States, and at least that many again around the world. That’s a heckuva big community. And yet, many of us live in towns and cities with populations greater than 30,000 – so in the grand scheme of things, 30K is a drop in the bucket. My point here is that we’re often separated by geographical distance. Growing up, I traveled 100 miles one-way to get to my CF clinic, and I was the only person in my town with this genetic disease. Still, many of my close friends who also have cf live 100 miles, 1000 miles, 3000 miles away or even further. There’s no way I can keep in touch with them face to face (which we’ll come back to). This virtual community online, through chat boards and email let’s me keep connected when we’re far apart.

Making Safe Connections

More and more, there is concern over people with cf cross-infecting one another with bacterial infections at face to face gatherings. It’s one of the unique and sad things currently about this disease – rarely are other people facing health crisis told they should not meet face to face, or if they do, to be very careful. While it saddens me greatly that we have to deal with this situation (I’d much rather live in a world where my closest friends and I posed no health concerns to each other), I’d like to think we could alleviate some of the fallout with creating these virtual communities online.

Many of us have already done this. We’ve chosen to reach out over our modems and broadband connections to “hook up” with one another emotionally. Websites like Dreamsurfers has emerged as a kind of virtual support group for kids with cf, and groups pop up on places like aol, and yahoogroups as a gathering place to talk about cf issues. We’ve got access to research studies, and medical information through the Cystic Fibrosis Foundation, and Cystic Fibrosis Research, Inc. to feed our minds and reassure us that people are, everyday, working to make our lives better.

My desire, when we started “Through the Looking Glass” and the Breathing Room website, was to further this spirit of community. The idea behind it was to offer people a chance to connect by telling their stories – happy, sad, tragic, poignant – something that was different than the format of other chat rooms and bulletin boards. I wanted to put a face on CF – not one related to fundraising, but the face of multitudes of people who deal with this day in and day out. The hope was, and still is, that through sharing we can each feel a little less alone, wherever we find ourselves on the globe. I think we’ve made a really good start.

But, is this enough? Are we, as a community, using this technology to the best of our ability? Have we embraced it to suit our needs? I don’t know. What more can we do? What will help us to connect to our fellow cf friend, or family member? Is broadband allowing us to get nearer to sharing streaming video and audio…would that help us feel closer? Would we be better off with 30,000 individual websites, and a massive web-ring where we visit one after another after another? It would certainly let us celebrate ourselves as individuals.

Would web-based “clinic visits” keep us in touch with our care providers, and thus keep us healthier in between brick-and-mortar doctor office visits?

I don’t have the answers – but I’m hopeful. For all the losses that have accrued over the last 20 years due to knowledge around the spread of infection, of families moving away from friends, from isolation due to declining health, I think I’m closer to my CF community now, with the internet, than I was before at any other time in my life. That’s something to be excited about.