May 022015
 

I’m not often told it might be good to avoid Twitter or to give it a break, but when I am — and when others with brain injury are — it’s by people not on Twitter or who have a lurking-only account. And who don’t know or understand how I use it.

They’re unhelpful.

They’re unhelpful because they don’t understand how Twitter works. And so they advise the blunt instrument of total avoidance instead of helping me or anyone with brain injury avoid the “negative” while allowing us to still play in the fun social sandbox.

One reason us people with brain injury are told to stop is because of “oversharing.” This is part of a larger discussion about our cultural shift to emoting more in public, to creating closer ties even with people we’ve never met in real life, to the trolls among us and how to protect ourselves from them. But the oversharing I’ve seen people with brain injury are criticized for is nothing compared to what some non-brain injury people do. I think the advice to us in this case smacks a bit of the patronizing attitude so systemic towards people with brain injury. Talking out consequences but leaving it up to the individual to decide if they can handle it is way more respectful than telling them stupid stuff like, “what will your daughter think?” Maybe their child will realize their parent is a suffering human and learn some compassion.

Another reason given to avoid it is when we’re bothered by tweets from a certain individual. In that case mute block report that individual is the better option, and I’ve written about that before.

Another reason can be overload. This is a valid concern. We people with brain injury are prone to sensory and informational overload. Couple that with impaired ability to stop, and you have massive energy drain. Years and years ago, I began to turn off the computer and go offline Saturday night and not turn anything back on until sometime on Monday (very occasionally Tuesday). That broke any addictive cycle that had been building up over the week. It also gave me the rest I needed.

The iPhone has complicated things for me because it has apps on it that I find restful or distracting. It is a computer but not a computer. It’s my second brain; it helps me function and relax. But the iPhone has the ability to connect to the online world through its data connection, and with the phone plan I have, I don’t worry about data costs. Deadly!

Worse, brain injury tends to kibosh self-control and habits are hard to keep.

But I’ve held this habit for so long that I don’t forget it, like all my other ones. And if I do sneak online, this habit keeps me from not participating. One complicating factor is I do need a data connection to message people — messaging is the new phone calling and, frankly, a lot easier to keep in touch with others no matter one’s schedule. But I’m not exactly a social butterfly anyway.

And sometimes no matter who you are, just like we all need a vacation from work or from family, having an annual or every-four-months week-or-two-week-long vacation from Twitter or Facebook is a good way to recharge the social batteries.

But for day to day, instead of wholesale avoidance, the health care provider should be suggesting:

  • Focus on your Twitter list of close friends.
  • Just look at your hobby list.
  • Muffle the political tweets that are sending you ballistic until you’re ready to get back into the game.
  • Follow your favourite Twitter chat and then turn Twitter off till the morning.

But they cannot unless they use social media. Just another reason why the divide is growing and causing friction between the patients on social media and the health care providers and friends and family members who are not — to the detriment of the patient’s social and emotional health.

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  • What a brilliantly insightful post. I totally agree. Trying to discourage TBI survivors, and others, from fully expressing their experiences, is integral to the system we live under. ‘Emoting’ and other forms of honest communication heals and equips everyone involved in the communication. This naturally leads to those involved growing in personal, and group, power.

    This is something the system just cannot tolerate because the power we gain is the power it loses. For the system power is money, and that is its raison d’etre.

    Thanks for this superbly written post/article, Shireen.

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