Coming together or falling apart?

The combination of my daughter's illness, a dinner conversation with a film maker friend of mine last night and a post from Jon Husband have been the kick in the arse I needed to write something on this blog instead of just quoting others.

Most important first. My elder daughter has recently been diagnosed as having Chronic Fatigue Syndrome. For some months now she has been lacking in energy, looking grey and complaining of aches in her legs. We have had everything organic tested for and eliminated from the possible causes and the pediatrician now reckons that she had Glandular Fever about a year ago and her body is still suffering the lingering after effects. What has been interesting is dealing with something for which no concrete cause can be found and for which no cure can be suggested. Her illness doesn't fit neatly into the hierarchy of illnesses doctors are trained to deal with and once you are outside that structure they really don't know what to do with you. We have had to rely on our own efforts to find out more from support groups and individuals writing on the web and in newsletters and to seek support from fellow sufferers rather than from experts.

The, rather heated, after dinner discussion last night was around whether people need "experts" to manage their sense making for them. My friend was saying that unless we have film makers, or broadcasters, or the media generally managing our access to stories then the world will fall apart and we will all descend into echo chambers and misinformation. I was arguing that access to other individuals making their own sense of the world through blogs or increasingly podcasts and amateur films and documentaries gave me a better basis on which to make my own judgments and meant that I was less subject to being misled by powerful media forces with their own agendas.

Jon Husband's post talks of the rise of coaching in the business world as a reaction to restructuring, downsizing and general destabilisation and suggests that coaches need to support people as they come to terms with the wired world and it's fragmentation of sense making.

There is a pattern in all three that to me is exciting but to some is deeply disturbing. We can no longer rely on the certainties that appeared to underpin our world. Experts who knew all the answers, structures that remained unchanged for decades, society that neatly lined up the way it was meant to and individuals who knew their place and assumed the roles expected of them.

For me this is exciting as I believe that we all make our own realities and have the power to be much more than we ever expect. But this ability, which is becoming a way of life for more and more of us as we are forced into relying on our own ability to create meaning, has the power to be used for good or ill and individuals must take on a far greater degree of responsibility than they have been expected to in the past.

Comments

[Ronni]

It's the "responsibility" that is key. It regularly surprises me how little ability recent college graduates I've worked with have to discern fact from opinion, and how to determine if a website or other source of information is reliable.

Until we begin to teach this kind of discrimination in school, beginning at a young age and continuing through college, your film maker's fear of rampant misinformation is very real.

[andy]

Euan, I have a friend who has been living with CFS for several years now and knows quite a bit about it from many aspects - I can put you in touch if you like. And have you seen A Life in Wales? She too is a CFS sufferer.

[Euan]

What a wonderful blog Andy - thanks for the pointer and the offer of help.

[hugh macleod]

So sorry to hear that =(

[Ross Mayfield]

Thoughts are with you and your loved ones.

[Mark]

Euan - if you need some one to walk this path with you a way do give me a shout.
Man it something that scares the crap out of me, only with children do you know what responsibility means and also the joy that comes with those little hands.

[Euan]

Thanks all of you for the offers of help and support - it is much appreciated.

We will get through this tough period, and my daughter will be young enough, hopefully, to remember little of it. But I will remember the fact that so many of you, through comments or e-mail, took a moment to think of us.

Thank you.

[tom matrullo]

Euan, here's hoping all will be well - kids are usually more resilient than we tend to give them credit for. On the theme you raise, perhaps part of the frustration felt on the part of individual researchers, bloggers, voices, is the sense that "experts" are too often the ones who wall themselves off from the richness and diversity that comes through nonstandard modes and channels. Institutions can be little echo chambers with outsized amplification. Best wishes -

[Claire]

I'm very sorry to hear that Euan.

I can share a similar story. I've always had low blood pressure. By accident I got into a chat with a nurse who said if I lived in Germany I'd get treated for that. I've dug around on the web and with the help of a medically minded friend have discovered that some aspects of my life (a low salt diet, not drinking enough water) are linked to this and making the problem worse (hence often feeling very tired, random dizzy spells the doctor said was vertigo). I'm pleased this interaction allowed me to get beyond the barriers of NHS advice and hoping I can make some changes to my life now - including losing my reputation for being a sleepy head!

[Euan]

Funnily enough my wife has always suffered from low blood pressure and has also been frustrated at the way the medical establishment in the UK don't see it as a problem.

[Eric E]

Just clicked through to your blog today for the first time, and was riveted by this post. Our family has been going through a couple of health-related crises for the last 18 months. I found that once we figured out there was a problem, we could turn our anxiety to some useful purpose. Surprisingly friends and family weren't all that helpful, because they jumped right to the solution (don't use drugs, use drugs, change the diet, do this, do that), and didn't seem all that interested in the tremendous upheaval we were going through.

We did get lots of support, it just wasn't always from the folks I would have expected it from.

Also liked your comments about filtered info vs. info from a wide range of sources. When I worked as a journalist, I always found myself trying to make my writing more like other people, instead of doing my own thing. I think that can happen with blogging, too, but there are so many alternatives out there to overcome that tendency...

Good luck with your daughter.

[Euan]

Thanks Eric - thanks for the comment and for dropping by.