So far, my Twitter experiment is working out. I write my chapter; go rest, eat, drink; think over whether I should tweet out a few excerpts through my own account; decide yeah, extra work but good for the readers; type out my tweets and my characters tweets into a separate document; think them over: did I miss any necessary detail? Am I being too obtuse (I’ve been accused of that!)? And most importantly: is the character count including hashtags within the 140 limit? Then I go to it and hope for the best.
So here, in case you missed them or are unable to follow me and my growing cadre of characters on Twitter, are today’s tweets of my twovel:
I wasn’t sure I was going to be able to participate in National Novel Writing Month, which I have since 2009, this year. The thought was disturbing. But my muse came to the rescue. It said: locate a novel on Twitter. Make it a mystery. You figure out the rest. Well, I did. And though I waffled over my initial idea of playing it out on Twitter — should I or shouldn’t I? — and though I began by thinking the entire novel would take place on Twitter and ended by realizing it couldn’t — by the time I began writing Chantie’s story just after midnight on November 1st, I knew I would go ahead.
List of characters, revealed to date:
So here’s the deal. [Updated 6 November 2014 with questions for me, below.]
The novel takes place on Twitter, which means the characters will be tweeting at each other, which means they need their own accounts, which means, well, hey you can watch them tweet on Twitter. The only issue is that the novel includes some prose — how much I’ll find out as I write it. That prose will, for the most part, not appear on Twitter. That could make it a little incomprehensible for readers or, I’m hoping, make it more mysterious and set up conversations about what’s happening “behind the scenes.” This idea will certainly make novel writing more challenging for me. I don’t know how Charles Dickens ever got the nerve to serialize his novels as he wrote them, but I’ve always admired him and am now following in his footsteps. Eek!
I wrote the first draft of the final chapter yesterday. That will remain locked up away from prying eyes. Today, I wrote the first chapter of my novel, tentatively titled Chantie. I’m not a big fan of my title; it’ll do though. Anyway, chapter one introduces my main character Chantie Trembel, and I opened it up on Twitter with a few critical tweets giving context:
Questions and Answers
If you have any questions, tweet me!
@ShireenJ Are the tweets in real-time?
— Ben Babcock (@tachyondecay) November 3, 2014
I was debating about the timeline. I write the novel in 30 days, so should it take place over 30 days? Sort of. Because of the writing process, some of the tweets won’t be in real time. But all the Twitter chats will be done in the time they’re supposed to happen over. Where time is a factor, I will stick as closely as possible to real time.
@ShireenJ is there a risk of being dragged into the narrative by following them? Because that’d be hilarious 😉
— Krupo (@PromisedMePie) November 6, 2014
I was thinking of having Bobby follow some of my tweeps, then I began to wonder if he did more than follow, if he interacted with them, how would that work in a published novel with issues of copyright and all? I’d ask before I did that and before I had his character follow anyone as well. But it could be fun!
All tweets by my characters are copyright protected under my name as per Twitter’s terms of service. “5. Your Rights You retain your rights to any Content you submit, post or display on or through the Services.”
When that tweet I MT’d came into view on my Twitter feed, it caught my attention, not for its rather obvious message, I mean who’s dumb enough to think texting and driving is a good idea, other than maybe, I guess, people who want what they want when they want it now– Anyway, where was I? Oh yeah, it caught my attention for this reason:
2014-10-22, 9:00 AM
@ADDCentre I remember practicing as a kid reading signs like that w interlaced narratives till I got good at it. Not any more! Sigh.
After I tweeted that out, I forgot all about it until the ADD Centre tweeted back and said why don’t we add that in to my session? Oh hey, I like!
ADD Centre (@ADDCentre)
2014-10-24, 9:04 AM
@ShireenJ let’s introduce it during training sessions! Are you still activating wernickes?
This week we did. My trainer set up the tDCS — the anode sponge over my Wernicke’s Area, just above and behind my left ear, the ground sponge on my right shoulder, setting it to 2mA (tiny, tiny amount of electrical current) — and I began to read the sign on my iPhone. Oh my.
That was hard.
I began by trying to read the message in black type. Then after, I don’t know, three or so stuttering tries, I switched to reading the message in blue type. That was harder.
I had trouble following both message lines separately and comprehending them separately, even though I knew what the gist of the whole sign was. After a few reads of the blue message until I was able to follow it from beginning to end, I went back to the one in black. I alternated back and forth like that a few times.
Black fonts are easier to read than blue ones.
At times, my trainer would talk to me at the same time as I was reading — to add on an extra layer of distraction and to get the electrical stimulation to zip along both reading and listening brain networks. Oh my. Just recalling that makes me feel slightly nauseated.
Even though I was only trying to read the messages separately and not even attempting to read them simultaneously, I was getting too dizzy. So after about 3 or 4 minutes, I stopped. My trainer and I chatted for the rest of the 12 minutes of stimulation.
I told her that when I practiced as a kid reading alternating text like that simultaneously, the type was all in black. Harder, she noted. Yup. She was wondering where you could find other interlaced or alternating texts. Good question. I’d wondered too, but after some futile Googling, gotta admit I don’t know. I don’t know if there’s an official jargon name for intertwined text like that or not. If there is and if any reader of this post knows it or how to find interwoven text, please leave a comment letting me know. Thanks!
I will be trying this again. For me, practicing with familiar text fits in with my rehab’s advice on how to improve my reading better than with trying to find novel signs for each session. The OT at Toronto Rehabilitation Institute told me to practice reading text I already knew. When you’re working on higher cognitive functions to regrow and cement those networks, that sounds like sane advice to me for text like this as well.
Data don’t lie; you can’t hide from data. Mid-August my gamma brainwaves had dropped, my ever-spinning busy brain, heart rate, and muscle tension risen. Then my Pastor helped me make a necessary decision, and all my brainwaves returned to my normal the first week of September. I learnt a hard lesson about social media and therapists.
The situation on Twitter my Pastor extricated me from had been unfolding for months. I had been blind to it because of being a woman who hates confrontation, because my injured brain processed slowly what I was experiencing, because the PTSD hell I am in deafened me to the subtle difference between concern and obsession.
When I began to feel crowded in late August, I spoke to three therapists, a peer mentor, friends, and family about what to do. The situation changed daily and hourly; advice I got was old by the time I returned to Twitter. My inability to make quick decisions, my self-doubt, my slow processing all rendered me unable to handle the situation in real time on my own. I didn’t have weeks for my brain to process sensory input and initiate an action plan. I needed professional help. I didn’t receive it from my not-on-Twitter therapists. If I had told any therapist a man I knew was suddenly knocking on my front door every. single. day with a bunch of roses, then roses and chocolates, then roses, chocolates, and teddy bears several times a day, what do you think they would have said? Probably not “I can’t tell you what to do.” Finally I thought of my Pastor. He is a professional, he knows off behaviour, and he participates in social media. It was the latter that benefitted me. He understood the milieu, the tools to protect people; he knew what I needed to say and what I needed to not do. Mute, block, report, in that order, he repeated to me, if the man keeps getting to me. I wrote down his instructions and acted.
Relief. Then I got angry.
Imagine being a person with a brain injury who discovers Twitter, begins to flourish socially, then is informed by mental health professionals who are not on Twitter how it’s not “real life,” it’s only a start, how they need to get a social life in the “real world.” And to leave if someone is bothering them.
It’s patronizing, unhelpful, uncomprehending of social media, and a nicely worded putdown of your client’s experiential knowledge of Twitter as if it’s not as good as your what-you-heard-through-the-grapevine knowledge.
How can you really know the new and opaque Twitter community if you’ve never lived in it? Would you consider yourself qualified to help a person if you had no experience with commuting, with working, with living with a family, with friendship, with social clubs, with professional groups? That’s the kind of therapist you are when you attempt to aid a patient on Twitter when you’re unfamiliar with it yourself.
Up till now, I’ve thought it would be nice but not necessary to have my therapists on Twitter with me. But I’ve changed my mind. It is necessary for people in the helping professions to be on Twitter, to be experientially familiar with it.
So this blog post is for mental health professionals with no social media life experience.
Social media, specifically Twitter, is real life.
People in the helping professions who are not participating even to a small, regular degree, cannot help their patients or clients when toxic situations arise. They may think they can; their clients may hope they can. But they can’t.
How can you tell when behaviour is tipping from a bit too interested to obsession to stalking when you’re not familiar with what’s normal behaviour on social media?
When would you advise a patient being harassed on Twitter?
You may have heard about the obvious dangers where men tweet vicious rape and death threats to women. But people also become obsessed with a tweep so subtly and cleverly that fellow tweeps won’t recognize the danger. These people can control a person through misusing good Twitter features and can stalk them with no effort. I can see furrowed brows as you guys not on social media think “following” is stalking. It isn’t.
That’s the essential problem isn’t it when your patients or clients are on Twitter or Facebook and you are not: you speak different languages.
It’s like the telephone forty years ago. The instrument of instant voice communication was ubiquitous in Canada but not in England. Every time I visited England, I’d go to call someone and was sharply rebuked. What? What do you mean I can’t just pick up the phone and talk? What do you mean I can only use it if urgent and to use the mail instead? Since when do people use letters to talk to each other?!!! Argh!!! The English relatives would have the opposite experience coming to Canada; they would marvel at this concept of easily talking to people any old time and for as long as they wanted to. How novel! How fast! How freeing!!
That’s social media: novel, fast, freeing; also fun, challenging, stimulating, newsy.
But a therapist not on Twitter is like that relative in England: unknowing and unbelieving.
Twitter has matured into a community separate yet threaded into the world. Today, people of like minds meet each other across space and time; people of opposite minds debate and people from different cultures learn how they argue differently, making us Canadians appreciate how respectful we are; people talk to each other rapidly as if face-to-face, as well as in slow motion over several hours; people congregate around conversations like at the best party ever; people strike up friendships, draw “real-life” relationships closer, and take Twitter ones into geographic space, thereby changing them in unforeseen ways; people live tweet events to an audience who watch through their smartphone apps; journalists smash through the confining walls of traditional media; people influence politicians; and people get a hell of a lot better customer service – it’s amazing what complaining about bad service to one’s 1000+ followers does for your telephone service. Tone, mood, tiredness, hunger, laughter, knowledge, EQ, IQ, sense of humour, interests all come through in tweets. People become intertwined; personal discussions are conducted in public instead of privately through DM. As a result, all sorts of social cohesions and problems crop up that therapists have no clue about, even if explained through the imperfect filter of their patient’s experience. How would you advise your client in trouble on Twitter? Perhaps tell them to take a break from social media, as I was told to?
But that advice blames the victim and reveals your harmful-to-your-client ignorance of safety tools created to allow the victim to stay on happily while sending the offender out the air lock. Can you imagine advising your client to not visit their friends, don’t read the newspaper, don’t talk to politicians, don’t attend events, don’t watch videos, don’t listen to music, don’t share your photos, don’t write? Well, that’s what you’re doing when you suggest quitting Twitter or social media.
What does a patient do when a painful conversation pops up in their stream? Could you advise them and recognize the urgency if their tweeps began arguing with them, muted them, blocked them for no reason they could understand? Arguments are a fact of Twitter life. Not all are bad. Political or news-driven arguments are informative or entertaining and the cool thing is that strangers jump in – but perhaps a person with a brain injury or social phobia would hesitate to participate without your help. Being able to ask you, their therapist, for knowledgeable guidance would not only be nice but moreso necessary for people with poor social skills and/or low EQ, dontchya think?
Relationships on Twitter are real ones. People are people everywhere. They bring their baggage into the Twitter community, even when they intend to hide it. If they tweet regularly they’ll eventually reveal more and more of themselves.
One of my therapists said it’s like texting. Um, no. It’s more like film acting or writing a book in that you have no specific audience in mind. Maybe one day when you’re a little emotional or bored, you tweet out something revelatory. You mayn’t get a reply, so you won’t know it was read. That drops your guard a little. You tweet out something more revelatory. Pretty soon, regular followers and anyone checking out your timeline will develop a pretty good picture of you. But in texting you always have one person firmly in mind – so you’ll remember to keep hiding what you don’t want the other person to know. And no one ever joins in that conversation sans an invitation.
I was also told it’s like a dating site where the person you’re supposed to be exclusive with can see when you’ve logged on and who’ve you corresponded with. Really? I had no idea. But, um, no. Twitter doesn’t reveal lurkers. But Twitter does make monitoring dead easy: turn on notifications on a favourite tweep and voilá, as soon as she tweets, your smartphone or tablet buzzes. It’s a great feature for friends to keep up with each other or a therapist to monitor a fragile client, but it can also be used to obsess over a person. Or control them. Or stalk them. Fun.
Would a therapist not on social media know about that?
No. You wouldn’t. And so you might say soothingly, it’s only a coincidence he tweets you within minutes of you tweeting and he’s suddenly mimicking your tweets, not recognizing the danger to your client.
Would a therapist not on social media know Twitter is like face-to-face communication and how rapidly things evolve or devolve?
No. You wouldn’t. And so you might tell a woman patient with a brain injury worried about a man obsessed with her, that you can’t tell her what to do but can discuss it at the next appointment if it remains unresolved, as if she has weeks to decide, compose, act.
Would a therapist not on social media understand mute, block, report?
No. You wouldn’t. And so you would tell your client to take a break from a big part of her real life instead of advising her on how to use the safety tools in order to stay in her community sans being harassed.
Well, what’s in it for me, asked one health care professional of me, as if being able to advise their patient appropriately was not a good enough reason. Ahem.
Well, okay then: what’s in it for you to live in a community, live in Toronto, be part of Canadian life?
Do you read newspapers? Twitter will provide you broader and more comprehensive news faster than your traditional newspapers, TV, radio, way beyond what you can imagine. Do you like to influence local politics? Twitter will get you direct access to policians, bureaucrats, and journalists. Do you like to chat over coffee? You’ll meet all sorts of people from around the globe to shoot the breeze with. Do you want to expand your professional learning? You’ll get together with patients and fellow professionals in scheduled chats. Do you want to meet like minds and be challenged by new ideas? Do you want to break out of your geographic box and meet your fellow Canuckians, learn about Canada’s North, feast your eyes on the gorgeousness of our country, our planet? Do you want to meet your fellow professionals from the UK, Australia, India, etc. socially as well as professionally? Do you want to participate in your professional conferences more fully? Do you want to watch volcanoes blow complete with visible and audible shock waves? Do you want to participate in or watch events you can’t attend? Do you want to discuss a TV show no one in your family is interested in while you’re viewing it? Do you like to people watch? Well, Twitter does all that and more because it’s a community comprising flesh-and-blood humans connecting through their minds. Rather sci-fi’ish I know. But real.
Twitter is real life. Twitter is where your patients and clients live. That is why you as a therapist must join in. Or if you choose not to, know that you are abandoning your client to the deceivers of the world while you watch from the sidelines benignly.
Distraction therapy is a time-honoured, doctor-endorsed way to cope with pain of all kinds, chronic illness, lifelong injuries, basically 24/7 health problems that drive you bonkers if you don’t find some way to separate your mind from them even if it’s only doable for a minute.
Judy Taylor, the woman who couldn’t eat and suffered the pain of stomach acid leaking onto her skin for years, excelled at distraction therapy, as I wrote about in Lifeliner, my biography on her and how she made artificial feeding possible for tens of thousands who need it. She took distraction therapy to the humorous and jaw-stopping nth degree by baking cookies she couldn’t eat, cooking pot luck dishes she couldn’t eat for community get-togethers, and taking great glee in feeding people.
Friends would greet her enthusiastically and warmly whenever she showed up at events. Everyone was happy to see Judy. What they wouldn’t do is ask her how she was — they could see it in the way she talked or held herself or what she talked about — for they knew that she was there for the same reason they were: to enjoy the company of other people and to have a good time. They knew she didn’t want to talk about herself endlessly. They knew that if she did need to talk, she would approach them.
Judy compartmentalized her life so that she could cope mentally with living on artificial feeding, never eating, and the acid burn pain on her skin. That meant she only spoke her most personal pain to her nurse, her husband, and her Pastor. Her friends respected that; if she ever shared with them, they listened but respected that most of the time she wouldn’t. And that was OK.
She lived in the time before smartphones and social media. These great inventions provide even more kinds of distraction therapy. My fave is Twitter.
The nice thing about the online world is that it’s as easy to participate in for a disabled person as for “normals.” The ease of tweeting comes not because you’re healthy but in the way you’re wired. I think people who like to talk and chat and write and who see the confines of 140 characters a fun challenge, are the ones who like Twitter best — no matter what their abilities.
Some of us are like Judy. Those of us who know about Twitter have discovered it’s a most excellent way to distract a person. When you hop into the Twitter community, you can get riled up by the latest outrage in any part of the world. And be distracted from your own intense pain. You can laugh over funny cat photos. And be distracted from the serious issues in your life. You can debate politics with fellow Canadians or international fellow Tweeps. And feel normal. And sometimes you can talk about your own personal pain and find fellow sufferers to commiserate with for a little while or sympathetic people who want to learn more or listen to you. But if someone asks you every single day or even weekly how you are, Twitter loses its ability to be distraction therapy. It becomes just another place like everywhere you go in real life reminding you that your life ain’t that easy.
There may be no visual cues on Twitter as to how a person is doing; but there are Twitter cues like kinds of tweets, tone of content, pattern of tweeting, etc. And regular followers can pick up on when a person is going south and ask then: how are you doing? And like Judy’s friends listen carefully, chat a little while for as long as one can and the person wants to, and then interact with them normally, knowing distraction therapy is the best thing one can do for the hurting person.
Heard on Q: first-born girls are the most ambitious and most likely to succeed. Bwahahahaha! Ahem. #braininjury
— ShireenJ (@ShireenJ) May 5, 2014
Brain injury takes so much from us or from clients and loved ones. On May 5th, I was listening to the radio show Q on CBC Radio 1 when Jian Ghomeshi, the host, mentioned that first-born girls are the most ambitious and likely to succeed. I guffawed. I’m a first-born girl, and I was ambitious; but back when I was in my 30s, brain injury “retired” me from society and normal ideas of success. Then I sobered up because I realized that for over a decade I hadn’t felt the kind of ambition Ghomeshi was talking about. Being a first-born girl, I know what that kind of ambition feels like. It’s eager, curious, engaged, energetic, future thinking, and present planning. What happened to it?
Is the drive to recover from brain injury, ambition? I asked myself. No, it’s desperation; it’s self-preservation. But it’s not the kind of ambition Ghomeshi mentioned. Is ambition included in brain injury recovery? I thought about how getting back into society like a normal functioning person is not only barred from us by our injury but also by the fractured and inaccessible treatment, and thus how ambition vanishes from our lives too. And so thinking about all these things, I’m inspired to make May’s #ABIchat topic on ambition. Come and join us on Twitter on Monday, May 12th!
Because of my Twitter activities and launching #ABIchat last year, the Communications and Program Assistant at OBIA, the Ontario Brain Injury Association, contacted me about writing an article on social media for their magazine OBIA Review. It’s rather nice to be invited out of the blue to write something, and so I did. Back in January. Just in time for their deadline. And then I promptly forgot all about it.
Forgetting isn’t always a good thing. But in this case . . .
Imagine my delighted surprise when the March 2014 issue (PDF) on social media came in my mail, and I opened it up. Actually, I opened it up after someone tweeted out their kudos, and I had to go look what they were talking about. Oh dear, brain injury strikes again. But wow — so cool to see my byline!
— Christine Upton (@ablanccanvas) March 20, 2014