Friday 20 April 2018

temporary skin art

I decided to treat myself to a bit of skin art for the summer months.

I've always known that I'm too indecisive to ever settle on a permanent design for a tattoo. So this kind of MS-specific temporary skin art is perfect for me. If I change my mind I know it'll be gone soon enough!

People ask if it's painful but the lucky thing about this kind of application is that you don't even know it's happening until it's done. So no need to worry about the discomfort in advance!

Rather than get it done at home I went to a new place for this one - I simply lost my footing and fell onto my Mother-in-law's kitchen cupboard.

The whole design is just over 3 inches wide. It's pretty abstract and the colour's already started to fade but I'm still really happy with it.

What d'you think?

Monday 9 April 2018

from our own correspondent

Nearly two weeks since the end of HUConnexion18 - it all seems like a strange and beautiful dream now, that we did THAT and met so many awesome people.

There were some great moments and I really want to get these down and out of my head before too much time has passed.

God forbid that it could feel like I'm banging on about it even more than I am!

The first time I went to New York I was worried that the incessant "Have a nice day"s would be too much for my hard-won British cynicism to take. It turned out, I loved it - it seems fake in this country but to my surprise people genuinely seemed interested in other people's experiences and stories.

I've been writing for Health Union / for around five years now and it was great to finally meet people who I'd only communicated with by email (who were so amazingly welcoming and grateful that we'd made the journey). Similarly, the other contributors - just fantastically positive and proactive, regardless of how far down the road of their health "journey" they might have travelled.

There was one session which was all about the different communication needs of health communities. The bit that stood out for me (as the writer of a sporadically-popular blog that gets a tiny number of comments*) was that the people who visit a site and don't leave a comment actually read posts and can get the most benefit from them.

* because obviously, everything's ultimately all about me, right? Yeesh, what a loser...

This reminded me that community is what happens when you talk to someone (face-to-face, online, whatever) and the other person JUST GETS IT. And this also reminded me about how important that feeling was when I was first diagnosed. 

On the day we came home there was an AMAZING session led by Laura Hope-Gill, whose own late-onset deafness prompted her to focus on the healing power of what she calls Creative Nonfiction.

Her talk was about the fact that we all carry these stories with us, about our own tragedies and the trauma of our diagnosis. And these are important to us and the way we deal with the situation.

BUT we have the power to decide what form our story takes - it's not the only story we have to tell, so we shouldn't get stuck in a loop, endlessly writing and rewriting our trauma. I made a note of this quote from Laura's talk but not its author:
The bad news is you’re falling. The good news is, there is no bottom.
I LOVE that!

Laura also talked about the importance of listening properly to others' stories - the way she talked about it, when someone tells you their story it's really a privilege.

I know I'm guilty of responding immediately with a quick-fire, "Oh, I know, that's happened to me...", because I like to think it makes the speaker feel less alone. Key takeaway quote:
Self-disclosure, sometimes mistaken for mirroring, is not listening. It is a substitution of one's own for the other's experience.
All it does is shift the focus back onto you - it is not helpful.

One more quote from Laura's session:
The world will come to an end. But love and beauty will remain.
Heavy. But overwhelmingly positive.

Much like HUConnexions18 itself. And I've not even covered all of the sessions that well-and-truly squeegeed my third eye. I've already started planting seeds to ensure we get an invite to the next event in 2019.

And anyway, we also managed to do a bit of sight-seeing, as proved by this picture of me hanging out with Benjamin Franklin.

(Although I should've tucked my shirt in...)