Thursday, 13 March 2014

I used to hate Twitter, now I love it

Before I'd ever used it, I hated Twitter, I was a bit Jonathan Franzen and thought it was nonsense. Now, I love it. It's perfect for low energy, you can dip in and out and say what you need to in 140 characters. And there are links to some great resources: I can bookmark articles in a jiffy and read later when my head is up to it (in truth, not all that's bookmarked gets read). My ME symptoms have been pretty bad this last ten days, that feeling of having weights in your head and neck and legs. And dizzy, so damned dizzy. I have fought it, tried to go out - I have shops on my doorstep, literally - only to end up spending long spells of the day in bed. I do restrict the number of people I follow to 500, otherwise it's too much like a flashing cockpit that I can't process. And I'm always tweaking who I follow: I hate to give up on someone whose tweets I like, but needs must.

The truth is that Twitter can be an Aladdin's cave (of course, it can be a hell-hole too, but you just don't go to those dark places of jabber-babble). I was so pleased before Christmas to discover The Mushin Museum in Cardiff, I was directed there by an anaesthetist when I was looking for information on anaesthesia in 1950s/60s for a novella I'm slowly, slowly writing, inspired by my doctor father. You don't use all the facts you learn, but you still need to know them, you need the mental 'furniture'. The curator at the Mushin museum  has been enormously helpful to me. By coincidence, I learned from an old CV just this week that my father had actually worked under Professor Mushin  - whom the museum is named after - in the early 60s. That gave me shivers. 

Then, the other day, I discovered artist/writer Nancy Campbell when she favourited a photo of snowdrops I'd put up that found its way to her. I learned that Nancy has written a gorgeous book called How to Say I Love You in Greenlandic, which I know will be perfect for my stepdad, it will revive his Greenland memories, so important now as he slips further into dementia. Through Twitter, we were able to be in touch directly and I have ordered her book.

I also came across The Istanbul Review recently. This gorgeous Turkey-based literary journal, 'with a presence in Edinburgh', is distributed in the UK by local indie store Looking Glass Books. I submitted some flash fiction to them last week on the off-chance and was delighted to have it accepted.

We all know Franzen gets his knickers in a twist about writers bragging on Twitter, sure, that happens, there can be dreadfully off-putting self-promotion - across all platforms - but you just avoid it. For me, social media is something of a godsend as I can't run around all over the place promoting my novel - but most of us use Twitter wisely when we self-promote - and why the hell shouldn't we publicise our writing, after the blood, sweat and tears that goes into writing, and having a book published!  But we also have a generosity of spirit towards other writers we admire, and that is invaluable.

Twitter is also a great tool for those who are chronically ill,  especially in housebound or bedbound phases. You can feel like shit with a capital S, but send out a tweet, a wee firework into the world, from your pillow. I often think back to my horribly ill days in 80s: unless you had physical visitors, it was a case of writing letters and phoning. Hard to believe now. I was 'amused' - if that is the right word - to come across a young woman with ME who had her many symptoms listed on an App on her phone, ready to present to the specialist she was seeing. We were both diagnosed at twenty, with the same hellish illness, but very different worlds, technologically. Her blog is here, she makes me smile. She loves her lipstick too, never a bad thing.

And, of course, Twitter is great for hearing about the latest research papers on ME - and the skulduggery - without having to trawl through the internet. I follow the excellent Tom Kindlon for this.


Meg Says said...

Thank you so much for featuring me and my blog in this post Nasim, I thought it was brilliant. I used to be quite anti social media and really disliked how sites such as Facebook meant that people thought they 'knew' you even if they'd never met you, and I deleted my old personal Twitter a few years ago after deciding that I wasn't saying anything important, it just was meaningless waffle that nobody needed to hear.

Now, I don't know what I would do without social media as it's enabled me to meet other sufferers in the same position and I feel that we're all helping each other deal with this awful illness. How did you cope with diagnosis in the 80s? I've often wondered what it would be like to live with ME before the Internet really 'took off'.

A woman commented on my Instagram page before saying that she still has a deep rooted fear of telling people she has ME as she was diagnosed over 20 years ago and says that not many people 'believed' in ME then and she was always fighting for some recognition that she was truly ill, which is very sad to hear. I really hope your experience was more positive :) thanks again for mentioning me in this post, I truly appreciate it! x

nmj said...

Hey Meg, Your blog really touched me, it reminded me of myself all those years ago... The great thing about social media is there is no pressure, you can tailor it exactly to suit your needs/desires. And you can literally switch it off it becomes too much.

It was easier in some ways in early 80s as ME was seen as a discrete neurological illness, the conflation with 'fatigue syndromes' had not yet happened, this doesn't mean it was a walk in the park to be diagnosed, it took me 18 months and I was getting more and more ill - thankfully I was eventually referred to a consultant neurologist who was doing research into ME. There was definitely less awareness though, I had never heard of it until my own diagnosis. I had to go to the uni library for information. I also didn't know many people who were ill, I used to write to a girl I met in hospital, no Twitter or FB then!

Though later in the 80s the 'yuppie flu' tag emerged in the media, but the UK media has proved itself to be mostly hopeless in its portrayal of ME, even now. My novel is a fictionalisation of my experience, I think it gives a good idea of what the 80s/90s were as a backdrop to the illness. Of course, it is tough to have ME, whatever the decade. Re. the woman you mention who is still afraid of 'divulging' her illness after 20 years, that is so sad, but I honestly don't know how you *can* hide an illness that has such huge impact on every aspect of your life. Take care, my dear, I will pop back to your blog to see how you are doing. X