Thursday, 6 February 2014

privacy settings

I had an interesting conversation with my brother over the festive season, which has been on my mind ever since. But the reason for me finally getting this published was a thoughtful, kind-of related post on SwissLet's blog.

I blog here under the name stevedomino - this is an overhang from my days as a member of Derby's burgeoning still-born "indie" "music" "scene" and my old band Johnny Domino - since then it has been my user name of choice.

(Incidentally, my previous band was called - for reasons too arcane to go into here - The Millers, so for that period I was sometimes legitimately referred to as stevemiller - the days were long, dark and seemingly endless round these parts...)

Anyway, you don't have to be Nancy Drew to find out my actual full real-life name - even if you don't listen to revealing radio interviews (where I also reveal the name of my employer), a quick glance at my Twitter profile will provide the key to my not-so secret identity...

WARNING: this man may crack under questioning
Plus the linked posts which I write for are all under my own name.

I have tried to be careful about protecting the identities of people in my life (mostly... when I remember...), particularly my wife. But I know that in the past I have given away such tidbits as this just through being a bit clumsy.

The first MS blog I read which didn't make me want to GOUGE MY OWN EYES OUT was Jackie Zimmerman's MSunderstood (no longer online, unfortunately) - here was a writer who didn't take anything lying down and wasn't ashamed to talk about the (often humiliating) symptoms her conditions threw at her - plus she continues to be a constant force for good in the universe.

The fact that Jackie (and her colleague Dana) used to write in their own names led me to do the same when I started a blog as a way to sift through thoughts in my head which were mostly to do with my health.

Plus I don't know anyone my age (or even in the same basic age-ly ball park) with MS in the Real World.

The idea that the blog would find an audience - however small - was genuinely the last thing on my mind - if it was otherwise, I'd have chosen a blog title without a MILD SWEAR in it.

Somewhere along the way, I became convinced that this was a form of activism - a way of presenting a different face of living with MS than the one which is traditionally in the media.

As such, my logic went, why do it in anything other than my own name? I'm certainly not ashamed of having MS, nor am I particularly shy about "coming out" in person.

Now I know that there are many MS bloggers - certainly more popular and entertaining than I - who write behind user names and avatars, which is entirely their prerogative.

And I don't judge in any way, nor do I assign my own potential paranoias or shames to them. God knows, I know that I'm my own unique mess.

Anyway, over Christmas I was talking to my brother and he said that he'd read something on this blog, and that he thought it was weird that I would put it out there in the public domain for strangers to read. Why didn't I just talk to people?

(He also totally doesn't get Twitter)

And for some unknown reason, the fact that he'd been reading the blog royally weirded me out and I didn't really know why.

Was it just because he's someone that I know intimately in real life?

It's not as if this blog is a no-holds-barred literal representation of every crappy symptom and/or humiliation, because (a) that would be dull and depressing, and (b) there are some things which I'm uncomfortable being "out there".

So, it turns out that in some ways, blogging under my own name / image actually prevents me from being as honest as I could be about my MS.

(Weirdly, this was not the conclusion I expected to come to when I started writing this post!)

Anyway, my brother said that he didn't want to appear on this blog. So apologies, dear brother...

... although I did say at the time that I would use the conversation we were having in a future post.


swisslet said...

Thanks for the link, Steve! It's funny, isn't it? I have odd waves of mild anxiety almost every time I realise that someone I know has been reading my blog unexpectedly.... whether that's my brother gently revealing it, or a colleague at work or whatever.... I have my blog URL as a signature on some of my email, and gmail tends to automatically append it, and I manually delete it. I frequently have mild panic attacks about forgetting to delete it. As far as I know, my dad has never, if he's even noticed it, been interested enough to look. As I say in my post, most people just aren't interested.
I censor myself as much anonymously too: I almost never write about my family or some of the things happening with my friends. They may not know the blog exists, but that doesn't mean I can write with impunity. It's funny and there aren't any handy guidelines to reference.
My own particular thinking in this regard has been prompted by being contacted by a journalist about the possibility of an article on people who run through various difficulties - he has hep B and C and wants to run and talk to people with similar challenges. He found me via something I wrote on the MS Society website and tracked me down and is talking about doing a piece featuring me. I shared my blog link with him because I write about that stuff a lot there, but also because - like you - I increasingly feel some sort of responsibility to be open and honest about my MS. There's so much miserable shit out there, and if someone getting diagnosed stumbles across my writing and feels a bit better, then that has to be good, right? I also think it's important to help OTHER, 'normal' people to challenge their own preconceptions about what MS means for someone. Not to be self-righteous, or anything. But, you know, should I share my link in the article and blow my cover once and for all? or does no one read the Guardian?
Hmm. It's a minefield and a problem our parents never had, eh?

Ms. CrankyPants said...

Here I thought you really WERE Steve Domino. How disappointing to learn that you're plain old Steve WOODWARD. Oh, well. Incredibly, I actually am Ms. CrankyPants! The level of teasing I endured in junior high...well, one look at my avatar should tell you all you need to know about THOSE years, but combined w/ the ridiculous name - it was hellish.

okay, okay, that's not my REAL name [and hilarity ensues at this surprising revelation]. The reason I write using it is mostly because I'm pretty shy (and also worried about stalkers). Even though, as you said, it wouldn't take Nancy Drew to guess my real identity, somehow I feel better under a thin veil of anonymity. So there's that, for what it's worth.