Brain Power

Olympic Trials

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Footsteps on a snowy frozen waveIt didn’t take me long to get into the Olympic spirit, the trialling spirit. I say trialling because the stories — what some eschew, just get to the events already — is what makes the Olympics meaningful. Imagine working for four years towards one race watched by billions, training to improve, trying to avoid injury, fundraising to keep the training and competing going, to pay for equipment and coaches, and crashing out of the gate. Or being injured in the training or qualifying run. It’s rather like brain injury as a young adult — you’re working hard to establish your career, you’re building up networks, taking night courses to expand your expertise, you’re client-raising to keep your fledgling consulting business going, or, like me, spending hours after work on the phone or meeting people to interview them for a complicated non-fiction book. Then on the eve of an achievement you’ve pursuing for years on an inconsequential trip, you crash. Game over.

Seeing how the athletes handle adversity is inspiring to me. Usually. This year, it took me a couple of days to stifle the voice pointing out the oodles of people around them, pulling for them, tangibly supporting them, and most of all their coach(es). Every single athlete has a coach to guide them, goad them, hold them up when an injury fills them with fear. People with brain injury may look like they have that, but over the long run, not so much. The spouse tells them to try harder, willfully refusing to educate themselves on what it takes just to pull back the bedsheets and put painful feet on the screaming floor. The parent tells them that they gave themselves brain injury. Friends find reasons not to pick up the phone or meet them where the person is physically, cognitively, emotionally, and socially. Siblings tell them to get on with their life.

The coach knows more than the athlete in some ways so that they can teach, guide, be by their side and encourage through every struggle. They learn. The seek out new methods, new tech to help their athlete attain higher, faster, stronger. They don’t stop after a year, saying why aren’t you top. They keep at it for as long as it takes. Years. Families stick by, even move, spends tens of thousands over decades.

But people with brain injury, facing the same sort of journey because of the stale medical standard of care, must attain their Olympic podium in a year. It’s only possible if receive treatment within 24 hours or days. Ironically, I think only athletes get that. Some of these athletes who recover from concussion or stroke live in centres where I know there are treatment facilities for what I receive. If I had those treatments in January 2000, I would be back to my career, would not have lost my networks, would be fully independent again and able to earn an income. I have no doubt. Even without support.

But that’s not my reality. I live with the long-term consequences of the failure of medicine, of health care professionals working in silos and refusing to bridge the divides and learn from each other. I live with the knowledge I could have a coach, but the people who could have been never saw the rewards of that so walked away. And the person I have now resists; so it’s been like pulling a deadweight to beg, nag, demand, meltdown over and over to get incrementally more what I need to restore some semblance of (book) reading. Just reading though. So much fun being your own advocate. Not.

So for two weeks I escape into the Olympics, stifle my grief, and admire the accomplishments and the people who surround and lift up the athletes to attain their highest potential. And if they crash, they rally round and do it all over again, if that’s the athlete’s goal.

https://twitter.com/shireenj/status/961953739983769601

https://twitter.com/shireenj/status/962125701561413632

https://twitter.com/shireenj/status/962660826233606145

https://twitter.com/shireenj/status/962692550971789313

https://twitter.com/shireenj/status/965804824481681408

https://twitter.com/shireenj/status/965945732917284864

https://twitter.com/shireenj/status/966142914861641729

https://twitter.com/shireenj/status/966308285480685568

https://twitter.com/shireenj/status/965768467914936321

https://twitter.com/shireenj/status/967080422281793536

Concussion is Brain Injury

Archived Storify on #HealingTheBrain Conference 24 May 2017

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Storify, bought out by Adobe, shut down operations, flinging my Storify and everyone else’s into the virtual trash bin. Fortunately, the internet has helpful coders who supplement the pathetic FAQ Adobe created, and I’ve recreated the Storify here below as an archive.

Storify Screenshot Healing the Brain Conference 24 May 2017

I attended the Healing The Brain conference on Wednesday, May 24, 2017 as a brain injury survivor and live tweeted it, both to share with the world and my way of taking notes. I came away pumped with a clearer way of seeing the brain and a renewed purpose for revising my book Concussion Is Brain Injury. Doidge spoke eloquently on why neuroplasticity can be harnessed to permanently treat brain injuries and Thompson on one effective way to do so. Brain maps prove people with brain injury/concussion have real problems and are not malingering! Read the tweets for all the deets!

https://twitter.com/ShireenJ/status/867482745102110720

https://twitter.com/ShireenJ/status/867450250092568576

https://twitter.com/ShireenJ/status/867441316992569345

https://twitter.com/ShireenJ/status/867414767882862592

https://twitter.com/ShireenJ/status/867414215727906816

Internet and Computers

Seventeen Years with a Brain Injury

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A Twitter of a crash anniversary blog post this year. Mocha in one hand, croissant flaking all over me, and iPhone in the other, for over an hour, I tweeted:

17 years. Creeping up to 20. Hard to believe this time 17 years ago, I had less than 3 hours to live without a #braininjury .

A series of unfortunate events that ordinary day was 17 years ago unbeknownst to me. Here is a series of without #braininjury tweets.

Without #braininjury I could go to the AGO to see the mystical landscapes. And I’d have friends or hubby wanting to go with me.

Without #braininjury I could organize, gussy up for, attend, and have a blast at a party.

Without #braininjury I’d be going to see a movie weekly (though w the offerings these days maybe not) enjoy and REMEMBER it!

Without #braininjury I wouldn’t have to take Cogmed. I had a photographic memory & a trapdoor working memory. When they failed, I was lost.

Without #braininjury I never would have needed brain biofeedback, audiovisual entrainment, cranioelectrical stim, laser therapy.

Without #braininjury I wouldn’t have discovered loyalty is for the birds and trumpeter swans, talk of being there like downburst: here gone.

Without #braininjury I’d still have my full sense of humour. Laughter wouldn’t have become a stranger: strange to understand, strange in me.

Without #braininjury I wouldn’t have learnt emotions are essential to thinking. Emotions assist clarity & speed of thought. Who knew!

Without #braininjury I wouldn’t have learnt one’s reputation is entirely in other people’s hands so fuggetabout it.

Without #braininjury I wouldn’t have sold my film camera. I probably would’ve joined @Flickr though.

Without #braininjury I wldn’t have learnt point ‘n shoot photography can be fun. I wldn’t have developed a shoot-see-what-appears technique.

Without #braininjury I’d still be in the thick of fractious family and family politics. Maybe it’s a blessing not to be…

Without #braininjury I wouldn’t have met some very interesting, kind, caring, intelligent ppl – some sans concussion.

Without #braininjury I probably wldn’t have returned to the passions of my youth – brain & psychology – except thru writing. How ironic.

Without #braininjury I wldn’t be this open. Self-control, self-contained me. Losing it so freeing. But ppl prefer controlled.

Without #braininjury I wldn’t’ve learnt how fed up, bored ppl get w TBI healing time & want I meet their need to not kn, not my need to heal

Without #braininjury I wouldn’t have reached the limits of my persistence.

Without #braininjury I’d be reading mysteries, high brow & how-to books, 3 newspapers, magazines on cooking, science, politics, gardening…

Without #braininjury I wouldn’t have lost my ability to write short stories. But I wouldn’t have written my novels either.

Without #braininjury my piano wouldn’t be silent. But it would be really cluttered still.

Without #braininjury my life would still be noisy, chaotically busy energetically noisy, not silent and under the rule of fatigue.

Without #braininjury I wouldn’t have met the people shut away from society in day programs so docs wldn’t have to learn how to heal neurons.

Without #braininjury I’d probably have joined Twitter earlier and forever be dealing w ppl IRL grumpy about it. At least spared latter.

Without #braininjury I’d have written, published LIFELINER years earlier. It would have been a very different book. But better??! Maybe not.

Without #braininjury I’d still have hope. Maybe I do…

Without #braininjury I mayn’t’ve learnt how different I am frm family in blowing past bounds of accepted medical thinking to find recovery.

Without #braininjury I wldn’t’ve discovered an area where choosing NOT to heal a life-changing injury is accepted & imposed medical practice

Without #braininjury I wldn’t have experienced ppl giving up on me, of comparing me to others unfavourably, of fighting me on my recovery.

Without #braininjury I wouldn’t have learnt what my IQ is (not really essential 2kn pre-TBI). And how much brain biofeedback can restore it.

Without #braininjury I wouldn’t have fully understood the Book of Job. https://www.smashwords.com/books/view/61372

Without #braininjury I’d have a very different life. Would it be better? I don’t know. But at least I’d still be able to read, work in flow.

Without #braininjury I’d still know the insurance industry is rife with fraud by insurers and docs via IMEs are complicit. #onpoli

Ppl say appreciate their catastrophic injuries,wldn’t change. Not sure abt that 4me! But without #braininjury I’d be poorer in understanding

Without #braininjury I wldn’t’ve learnt how the DSM is used to constrain knowledge of the brain & its injury & so prevent recovery. #hcsmca

Without #braininjury I think I still would have seen how the gratitude movement is used to deny the existence & thus healing of suffering.

Without #braininjury I doubt my measles-damaged vision would have returned. So there is that! #eyesurgery

—/—

Seventeen years . . . Wow. I can’t quite believe it. I’ve come so far, yet I’m so far from what my goal of complete recovery was in early 2001, a mere six months after my diagnosis of closed head injury. I doubt now it’s possible but know more recovery is possible than what the medical experts still peddle to too many today.

News

Join Us to Protest for TTC Accessibility for All

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Accessibility of all kinds is pitiful on Toronto’s TTC.

Wednesday, August 31, 2016 at 4:00pm
Please join us at Yonge and Bloor
To protest this blatant injustice towards our most vulnerable citizens.

When you protest the TTC’s abysmal treatment of the disabled, we all win!

D!ONNE Renée is the organizer behind this event. If you have any questions, want to throw your virtual support behind her, or have comments, reach out to her via email or on Twitter at @OnElectionDay.

 

The announcement reads:

Accessibility is a Right — Not an Option

On Wednesday, August 31, 2016 – Between 4pm – 8pm, on behalf of community and Public interests, an #AccessibilityNow! TTC campaign/protest will take place starting in the Yonge and Bloor area to raise issues concerning discrimination based on disability, barriers, and ableism in transit and its services.

The Accessibility for Ontarians with Disabilities Act sets out the interpretation for “barriers.” Too many barriers exist within the TTC. It is not acceptable to take a “minimum/at least” approach in improving access for all. The standard should be a model that reflects an equal to or greater than the access that is currently available, model. The equal to or greater than the access that is currently available model is a model of equity and equality.

People have a right to access public systems; in this right, people should feel that they have the option to be free to choose whether they access those systems or not. We are all not free just to be.

Approximately 35 out of 65 subway stations are “partially accessible,” on good days. Functioning equipment = good days. “Partially accessible” means that all patrons don’t have the option to access the system for lack of elevators, Braille information and helps, proper signage (large print, clear, large-enough digital boards), functional escalators, inaccessible entrances/exits (now including Presto Card gates and readers) to subway stations, buses, streetcars, and extraordinary Wheel Trans wait/scheduling. Plus the TTC worsened accessibility when they began replacing the names of Toronto’s subway lines with confusing numbers.

TTC (and transit across Ontario and Canada) must be proactive in its operations and provide equality in its services and not discriminate against anyone, including people with disabilities and/or people requiring accessible access in order to use its systems. TTC was able to find money to implement Presto Card systems into its subway, bus, and streetcar services even though the gate systems being used at subway and bus stations are all not accessible; but TTC seems to be unable to be actively proactive in ensuring that all areas of TTC are fully accessible.

While this event will take place in downtown Toronto, the issues and concerns being raised affect all of Ontario and Canada. We want everyone to have the ability to travel independently, or in group, as we so choose.

We want a barrier-free Canada.

Will you help?

Will you join the protest and invite others to do so too? Will you gather with community in accessibility advocacy? #AccessibilityNow #GetItRight #AODA #AODAFail

News

Saying Goodbye to @MyABI_byRH

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@MyABI_byRH

I started this a few years ago to open up about living with a brain injury. The brain and emotions something people are scared to talk about” – @MyABI_byRH 18 June 2016

I hope by being open and honest other people can feel less alone and be comfortable that it’s ok to talk.” – @MyABI_byRH 18 June 2016

At 0700 hours BT, July 21, 2016, a fellow traveller on the brain injury journey died from a fall caused by a seizure.

Ppl not on social media talk about relationships on here not being real. @MyABI_byRH died this morn; it feels very real to me. #braininjury” – me on Twitter

I don’t remember how I, a Canadian, first met in the virtual world @MyABI_byRH aka Richard, a young Scotsman. This is why Search was invented: to help us remember that first contact, that first chat.

Memory like a misty ribbon emerges as I search back in time for our first exchange.

Back in the day, @BrainworksRehab was active on Twitter. Weekly, they thanked various tweeps for RTs of their tweets. I decided one day to look for people to follow not just react to those who followed me; so I used to check out the tweeps Brainworks Rehab thanked. I looked for anyone with a brain injury whose personality and thoughts came through their feed, whose tweets were worth reading. That’s how I found @HammondsHead, what Richard used to call himself on Twitter. Seven days later I responded to one of his tweets about getting on with kids better than adults because I so related to that. Boy, did I relate!

I followed him. And he followed back.

At some point, he changed his Twitter handle to @MyABI_byRH – that stands for My Acquired Brain Injury by Richard Hammond

A year later in 2013, his openness about his brain injury, his desire to get better, and him trying mightily yet not quite knowing how to overcome obstacles, sparked in me a desire to create a chat community for people with brain injury similar to Twitter chats I saw for people with diabetes. Because of a recent experiment in enhancing gamma brainwaves, I had become loads better and so felt I could do this.

I created #ABIchat, and Richard participated. But even when he couldn’t, his upbeat vibe for it encouraged me.

Unfortunately, he suffered another head injury only a few months after we got #ABIchat off the ground, and I did not have the energy nor the ability to keep it up (a typical brain injury problem, which I really wish would go away).

I’ve been made aware of this account by my sons. My son Richard uses this to post about his experiences as a (cont) http://tl.gd/n_1s0arc4” – 6 Feb 2014

I had to drop #ABIchat.

But I kept following Richard, although for a long while, his brother Scott or his Mum tweeted on his behalf after his second head injury – keeping up his tweets about his brain injury journey was so important to him that his family tweeted for him though they were not as into Twitter as Richard was. It was my first glimpse at how unconditionally his family rallied round him. I honestly didn’t expect to see him recover to his former baseline. But he did! And I believe it was the daily, active, loving support of his family that made such a diff.

It’s something too many of us don’t have. And I believe it gave him the bedrock he needed to keep tweeting and persevering after such a devastating setback.

It was a delight to see him sneak on to Twitter and begin to write his own tweets again when he was supposed to be resting. And it was a bigger delight to see his written language skills return and to see his thought processes begin to sharpen and mature.


But though the re-injury set him back, Richard never lost his genuine positivity. He invented his hashtag #adaptandovercome not as some sort of feel-good motto I see too often on Twitter but as a natural outflow of the way he viewed himself in the world. It wasn’t just a phrase, it reflected his thoughts, his essence of innocence, his determination and drive to improve, his desire to nurture and his compassion for others suffering from brain injury – well, anyone really, including remarkably, people who misused his trust. His compassionate-forgiving spirit flowed through his tweets to all of us who read them.

This past Spring, he unexpectedly became a father. Though scared, he didn’t hesitate to be there in every way for his daughter, even before she was born. He loved her like crazy; in only a few weeks, she changed his focus. She became, for him, the reason to redouble his efforts to #adaptandovercome.

I have such a fantastic life right now, and such a beautiful daughter. Luckiest man on earth.” – @MyABI_byRH 20 July 2016

Never thought I could love someone so much. She’s my reason for being now. My reason for pushing myself. https://t.co/3swIeGEkCg” – @MyABI_byRH 19 July 2016

Our last exchange was about his daughter, naturally.

There are few like Richard on Twitter or in “real life,” and his spirit is what I will miss the most.

Brain Biofeedback

CZ Brain Training, Email, and Reading my Own Book

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Sorry about the slowness in getting this post out. CZ SMR retraining is going well. We’re retraining my brain at the top centre of it to produce more brainwaves at the 12–15Hz or SMR range. When you’re calm, relaxed and focused, that’s SMR at the CZ. We’ve done five sessions with two screens of (re)training. Next time, we’ll resume the regular three screens of training since I’m already starting to show the effects of improved SMR. We’ll reassess at ten and know for sure how it’s going.

I’m starting to look like and feel like my usual self (whatever usual is … maybe I should say not fractured, descending into what feels like insanity but I’m more settled, calmer, able to bounce back a little like I can). And so I may be able to tolerate the standard level of training again.

This is why you need good professionals doing the brain biofeedback, not some cookie cutter protocol where one size does not fit all, despite what some may tell you. When things go not so well, health care professionals with good experience and education in this technology can adjust your training and get you back on track.

Last week, I began to wonder if it would help with the new awful development: migraines on Saturdays. I had them three Saturdays in a row – gone by Sunday mornings – but this past Saturday they didn’t blossom. The migraines were not as vicious as the ones I had after my car crash on a Saturday in 2000 and suffered from up until two or three years ago, although they diminished in intensity and frequency over time. But they are a body memory – my body is remembering what it was like way back as I write about that time. Current circumstances are also bringing that time back into my consciousness as I fight both myself and my neurodoc to keep the memories all stuffed in some hidey hole. The problem with stuffing the traumatic stuff away (or in the early years having those neurons involved in emotions and communication hived off from my consciousness) is that eventually the door to the hidey hole can’t stay closed against the pressure of what wants to be let out. As it strains to keep closed, body memories pop up – a migraine here, a knot of pain out of the blue there – until finally it blasts open. That’s PTSD combined with brain injury for you.

My neurodoc has not been helping, with his insistence that only certain formats of communicating are allowed, meaning he doesn’t do email. I’m a writer. There are just some things I express better that way. I’d prefer BlackBerry Private Chat, but, hey even secure email is better than nothing, as long as it’s private, secure, read and read soon after I write it, meaning days not weeks later, but preferably within 24 hours. It’s way past time Canadian doctors became comfortable with digital communications and that medicare (OHIP in Ontario) covered the cost of phone calls, emails, text, chat, video, etc. Patients need it. And physicians should be compensated for their work, however it’s done. I persisted, and my neurodoc will read my emails weekly (or less) in order to keep track of my reading progress, partner with me in my overall health care (because no one else is!), and discuss with me anything I bring up. I need serious chocolate after dragging him partially into the 21st century!

Meanwhile, I am focusing on updating my book Concussion Is Brain Injury, crowdfunding it, and wishing mightily I could read as easily as I used to, trying to stay positive but exploding at the frustration of it all. I wrote a Twitter essay to vent it out:

1. So I began rewriting #Concussion Is #BrainInjury & at 1st, all went swimmingly cuz all new stuff. https://t.co/i9tLJlDVrX #crowdfunding

2. But then I began reading my original chapters of #Concussion Is #BrainInjury. Brain went Bwahaha! So I shrunk goal down to 1 section.

3. I tried to read my recovery-is-like-trucking metaphor. Words bounced off my forehead like opaque bouncing balls. #concussion #braininjury

4. I put my published ver of #Concussion Is #BrainInjury into @ScrivenerApp & was trying to read my metaphor scene on the computer. Brain=😳

5. Nothing so discouraging to a writer as not being able to READ YOUR OWN SHIT!! My health care team hv dragged their feet on #reading rehab

6. I brought up my reading at 1st appointment. Talked abt it ad nauseum. And I STILL HAVE TO NAG them all incl neurodoc. #concussion

7. They love my writing. Think it’s fab I write. But seem to be singularly blind to fact I NEED TO READ EASILY TO WRITE! #concussion #rehab

8. Once again I’m left to figure out how to read my own shit while they treat my #readingrehab as if slow lane is cool. #braininjury

9. I don’t know how they expect me to continue writing if I CAN’T READ MY OWN SHIT & THEY PUT READING REHAB AT BOTTOM PRIORITY! #concussion

10. So Amazon informed me I had to update my Kindle. I turned on PaperWhite for 1st time in 2+ years. Maybe was serendipitous. #concussion

11. As I’ve always said, it’s much easier to read on an eReader or iDevice than computer screen esp after #braininjury . #concussion

12. My book #Concussion Is #BrainInjury is already on my Kindle.Will try making font huge so my brain will absorb the words so I can rewrite

13. I wish I cld mk every single HCP’s brain turn to mush whn they try to read so they’ll FINALLY TREAT #readingrehab seriously. #concussion

14. It’s going to be awkward reading on my Kindle & rewriting in @ScrivenerApp on my PC. But I haz a job https://t.co/i9tLJlDVrX #concussion

15. I hope to hell it works cuz I have no other ideas, my neurodoc seems to hv forgotten this HUGE prob,& @ADDCentre hv to fix my regression

16. Can I just say I fucking hate #braininjury ? It gave me this book, but I still hate it. https://t.co/i9tLJlDVrX #concussion #reading

17. OK. End of rant.

18. OK, reading #Concussion Is #BrainInjury on Kindle & rewriting my scene in @ScrivenerApp Full Screen mode, works. https://t.co/i9tLJlDVrX

Brain Health

Growing Social Media Divide Leads to Bad Advice

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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.

Brain Biofeedback

Back Behind the Rocks

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“It’s like you were in jail, got a taste of freedom, and now you’re back in jail.”

   

Apt description of my relationship and communication headaches in North America, I thought. It’s not like this is solely a North American problem or that all North Americans fear communication or trying something new in order to grow closer to others, but given loneliness is apparently the biggest disease here, I’m clearly not the only one so beset.

To help me retain what I had in the UK, my friend there invited me onto WhatsApp so that we could text for free. I’d heard of it, read about it on Twitter, but had had no desire to try it to this point when I personally knew no one on it. I wasn’t far wrong in the latter. Turns out, only six of my contacts were on it, but I digress

So I’m like, OK, I need more social connection in my life, I want to stay in touch with my friend better, I’ll download it. But my brain went: not so fast. Gotta read up on it. What does it mean Facebook owns it? How many decisions will we have to make? I’m tired. Foggetaboutit.

I couldn’t even download the app.

Even when I think I know what I’m going to do, my brain injury, and my kiboshed ability to make even tiny decisions or think through new ideas, gets in the way. It didn’t help that life back here was overwhelming me. I told my friend: I’ll get to it when my brain can handle something new. Then I sighed with frustration.

So when I was talking to my neurodoc about email and smartphones, I lost it. I told him: at least I’m trying. So many with non-injured brains don’t even try. They stay in their little bubbles of this is the only way I’ll communicate even when their profession is about clear and trusting communication, even though their way drains you, even though you cannot speak certain things only write them. I will not bend, they say through their actions while criticizing your (injury-caused) lack of flexibility or stating you just want to have it your own way. No. I want to be able to talk, to relate sans it exhausting me or resulting in me being isolated or unable to express myself to one of my health professionals because I cannot, with my brain injury and personality, pretzel myself into landline-phone-only communication, though I’ve been trying for over a year.

It must be incredibly frustrating for people with weak voices or damaged speech to deal with and receive full therapeutic value from mental health professionals who will only talk on the phone or in person, never mind trying to have social connections like mine who focus on their busy-ness over people (and over themselves ironically) or don’t do text because, well, it’s cold or would require them to have a cell or smartphone. Oy.

Anyway, I was venting all over my biofeedback trainer, who was doing her best not to laugh (yes, it is funny, but really I want to strangle a certain someone), when I told her about WhatsApp. Oh! she exclaimed, I’m on it. Oh. She immediately showed me how it works; then after our session, she worked with me to download the app and helped me make all those little decisions that had stopped me. I would have eventually gotten it done, maybe a week if I was speedy. But with her help, I was on in minutes, chatting with my UK friend!

But the look on her face when she saw I had only six contacts on WhatsApp said it all. Ninety percent of her contacts are on it, apparently. Whoa. In my circle, you’d think the person with the traumatic brain injury would be the last to join, the last to text, not be in the forefront. Apparently not.

Books

NaNoWriMo: Chapter 4 on Twitter

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Chapter 4 sees Chantie take BobbyFlax up on his offer to help her learn to navigate the Twittersphere.