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 Health

How Much Does Social Isolation Slow Down Recovery from Brain Injury? PTSD?

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I had a thought (I know, so odd): how much does social isolation, systemic inaccessibility, and opprobrium from family, friends, lawyers, health care professionals, etc. slow down recovery from brain injury and/or PTSD?

We’ve read of studies* showing positive effects on the heart of socially cohesive neighbourhoods, lifelong negative effects on children of lack of bonding as infants; we’ve heard of cancer charities successfully supporting patients through programs that are social in nature or AA working through people talking with people regularly, dependably. So we know social is critical to our we’ll being (although in how we shape our society and relationships, it doesn’t seem we believe it).

People with brain injury are marked by high rates of divorce (80% my diagnosing physician told me), high rates of unemployment, loss of friendships (no idea if 100%, but I’m sure it’s pretty close), ostracization by family members, and marginalization into day programs since the medical profession is seemingly not interested in healing brains. My father used to say to me that surgery is a failure of medicine. I’ll add that day programs are a huge failure of medicine.

One big message of the Book of Job is how unimpressed God is with friends who blame a suffering person for their unexpected woes and abandons them. Yet every one with a brain injury experiences this. I wonder: how much does that blame and abandonment retard their recovery?

When we know human beings are social animals and we know social cohesion enhances health and we know being a part of communities increases life spans and quality of life and we know social isolation destroys mental health (which is why sidelining concussed teens into darkened rooms by themselves for days is one of the stupidest pieces of medical advice I’ve ever heard), it stands to reason that people with brain injury would recover slower or not at all when you add to damaged neurons and shredded blood vessels friends leaving like rats from a leaking ship, family members pouring opprobrium onto persons’ already injured heads, spouses hightailing for the hills, health care professionals patting persons on their injured heads instead of doggedly pursuing treatments, and lawyers and insurance companies using personal epithets in their fight to deny legitimate claims.

Social workers will try and get a new social life going for their clients, but it’s a path littered with disappointments when the injury itself prevents regular kinds of social activity and many people don’t want to accommodate the sufferer. How much do those disappointments serve as brakes on recovery?

Yet resilience is a partial antidote.

Amazing resilience can allow a person with brain injury to progress in this society where answering emails and phone calls is considered too much effort, never mind staying in regular touch with a hurting person they once called friend.

But if you’re a friend who understands that friendship is much more than an annual catch-up, perhaps send the friend you care about a Brain-O-Gram and then make a commitment to enhance your own life by talking/texting/tweeting your friend at least weekly. Just a thought.

*Sorry, I don’t have links. If I had the energy, I’d go searching for them for you. But simply being able to write is an accomplishment these days. Sigh. 

Brain Health

Endless Saturday, the Day Between Good Friday and Easter Sunday

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It’s Endless Saturday. I used to call it Waiting Saturday. Like that day when Jesus’s disciples, particularly the women, waited for the Sabbath to be over so that they could visit his grave; like that day, the day after tragedy struck, and no one knew what to do other than wait, my life was one of waiting, of recovering from the shock of my brain injury, waiting for life to return to normal. But normal didn’t come, and my life turned into an Endless Saturday when the tragedy that caused it was behind me yet the new life of promise had not yet come despite working hard to heal my brain.

Well, it wasn’t my life or my injury that was putting me in Endless Saturday, I was informed. It was my attitude. I am surrounded, as most people with brain injury are, with messages of “move on,” “be positive,” “look at what you have, not what you lost,” “accept the changes,” “unpack the boxes of the new you,” “look at how far you’ve come.” Etc. Etc. The messages are endless and come at you from everywhere including from your peers as each brain-injury newbie goes through the same process of parroting the feel-good industry until you want to hurl all over the positivity and inspirational messages. I have never been so sure as I am now that it’s all bunk – it’s all to hide the fact that society and medicine does not want to deal with us, acknowledge our existence, and would rather we pretend we’re happy than to create a world in which we can be.

Oh-oh there goes my attitude again.

I’m not positive enough.

I don’t look at what I have enough.

I don’t appreciate how far I’ve come enough.

And then I remember England.

In less than 24 hours of arriving on England’s green and dimmer shores, I was free of my life. Toronto was behind me. Ahead of me lay 12 days of totally being allowed to be me, to be in control of my own life. Twelve days of not being at the mercy of others. Early into my trip, I mailed my biofeedback trainer a postcard from the British Museum. Yup, people still love the old-fashioned postcard. And I found a great one. She knew immediately upon reading whatever it was I wrote that I was happy. Then when I returned, my neurodoc was struck by how I “appeared markedly and significantly better.” It so dumbfounded him that he has changed his perception of my life, which he now calls my “Ontario life.”

What is the difference between my “Ontario life” before I went on vacation and after? I asked. There is no difference other than his perception and my ability to tolerate it. Actually, I don’t think there’s much difference in my tolerance: I went because I was about to crack apart.

I am again.

Ever since my “Ontario life” reasserted itself – it took only about 5 days to wallop me – I have been feeling like Wile E Coyote after he’s been conked and cracks appear all over him. I’m in that place as the cracks widen, just before he fractures into a million pieces. I am like the Angel of Denial (above), except I’m not denying the reality of my life but warding off its blows.

My neurodoc wanted to know: how many factors were responsible for me

  • being relaxed
  • my affect being reasonably good
  • not having much irritability
  • being better grounded
  • not being stressed
  • having a better quality of feeling (whatever that means) after my England trip?

Only one: relationships.

No, I lie. Two. Relationships and the energy drain of activities of daily living.

Whilst in England, I didn’t have to cook, clean, deal with Toronto’s garbage system, travel on a system that is hostile to the invisibly disabled, make the hundreds of decisions that are necessary to take care of one’s home and oneself. The biggest decision I had to make was whether to order the Continental breakfast or porridge or pancakes on the third morning of my hotel stay. Believe it or not, it took me a long time to decide because my brain injury has destroyed my decision-making ability, and it’s only slightly returned, mostly because of strategies like making the same choices in order to cut down on the number of decisions. But that day I didn’t want same-old, same-old breakfast. I wanted a treat. I had a choice of two treats I liked. That was enough to paralyse me until I asked myself for the tenth time what does my stomach want. I will rant about how much easier it is to travel on the Underground than on the TTC another day. And how English society accepts and naturally accommodates invisible disabilities.

As for relationships . . . in England, they were, in the words of my neurodoc, like a “comfortable old shoe.” Balanced, pleasant, vital, stimulating, and most of all, to my amazement, everyone looked at me as if they wanted to talk to me, as if they were enjoying my conversation. As my neurodoc put it, I wasn’t having to navigate and think my way around them and our conversations – even when a conflict arose out of my inability to express my (rather complex) idea. I was a little frustrated with myself, to be honest. But that didn’t matter. Hours later, my idea was picked up and expanded upon by one of my relatives. I was floored. And then there was the fact they told me over and over to ask for help, and when I did, help was given. Communication happened. When I needed it. Not in some time-delay fashion where I just have to wait until it’s convenient for the other no matter the effect on me.

Waiting isn’t just a matter of patience; waiting can be a matter of health and functionality. People here can’t see the difference between when waiting is about patience versus when it will affect a person’s functioning.

And now I’m back in Toronto. And once again I have to navigate people’s communications styles. One person does it one way; another does it another way. I have to remember which is which and be okay with whatever method the other person informs me is the only way they’ll communicate with me. In England, everyone texted or emailed or phoned, whichever suited me best because none of them seemed fussed about using smartphones or old-fashioned telephones or computers. Any works. They even know how to check their bloody emails and voice mails; I didn’t have to check up on them to ensure they’d received them (once I had the correct address). Or try and remember what message I left. Here, it’s a fucking nightmare of “I’m not going to blah blah blah.” (Or I’m too busy. Or I’m not interested in talking about that. Or you’re not my family. Funny then how my older cousin saw me as family.) Here, no one ever says: oh, hmmm, Shireen is the one with the brain injury, maybe we should ask her how she communicates best in order to reduce the effort it takes for her to reach out and be able to understand us. Maybe we should be the ones facilitating communication so that she’s not isolated and she has the energy to live her life, to get through her treatments, to be less stressed. I ranted that at my neurodoc. “Good point,” was his response. Uh-huh.

After my health care team saw the dramatic change to happiness in me – sans needing any positivity or inspirational shit despite still dealing with my brain injury and PTSD – they asked: are you moving?

I didn’t answer really. I was born in London. I’m a Canadian but also a British citizen.

Where do I belong?

My neurodoc noticed and said: you have unfinished business here.

He’s right, but the tediousness (my neurodoc’s word) of most of my IRL relationships will kill me. Anyone who denies the social biology of the human being and necessary interdependence is a fool. The destruction of our society won’t come from terrorism but from worshipping the gods of busy-ness and silos, from the fear of mind, soul intimacy.

And now I’m going to stomp off to watch Shaun the Sheep.

Brain Health

PTSD Freezes Reading Homework Out

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Relearning how to read comes in fits and starts when you have PTSD in addition to brain injury. Reading is probably more vulnerable to being sidetracked than other aspects of recovery because it is so difficult cognitively and, for me, fraught with issues of loss and identity and being part of mainstream society.

One of the goals of relearning how to read is to be able to escape into a book or magazine and so de-stress. Yet until I reach my reading goal, when I’m stressed, reading has and will have the opposite effect.

Reading makes situations that suddenly knock me over emotionally even more overwhelming, more draining.

Right now, reading remains a mixed bag of anxiety, frustration, positive feelings of doing something for myself, and seeing flickers of hope from the small improvements my neurodoc points out. I want to do my reading homework to assure myself I’m not being sidetracked by others co-opting my energies with their resentments and obsessive stalking needs and causing havoc in my brain; yet my neurodoc is concerned reading before I recover from these emotionally-charged situations can worsen me. Sigh.

I’ve barely begun my reading rehab take umpteen, and others decide their needs and emotions take precedence over my recovery and asking me how best to support me. I’m too tired to be pissed at the sidetracking of a goal that is crucial to my well being because it isn’t by any means the first time this has happened. And it won’t be the last. But now I have a neurodoc who has the skill to right my listing ship and get me sailing again toward being able to escape into a novel and ultimately even more than that. I just need patience and to keep my eyes on my own goals, on what my neurodoc is teaching me, not on those who want me to centre myself on themselves to the detriment of my health.

On that note, I take a baby step back to my reading homework.

Brain Biofeedback

Gamma Brainwave Biofeedback and the Healing of Emotions in PTSD and Brain Injury

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Brain injury can lead to emotions turning off, short circuiting, the frontal lobes not mediating the reptilian brain. PTSD can lead to emotions being blocked. Having the two makes mood and feeling emotions like being on a rudderless ship in an unpredictable gale. So where does gamma brainwave biofeedback fit in?

If brain biofeedback or neurofeedback takes a broken brain and, like a potter does with a shattered vase, glues the pieces back together, albeit with visible cracks, then gamma is the water that smooths the cracks.

Gamma is fragile. It repairs emotions, but enhancing it in a broken brain is tricky.

Those with only trauma apparently feel their wounds being healed, their mood lifted into happiness, whereas I with my injured brain have a more complicated healing journey. I felt that happiness more when doing the biofeedback at CZ than at PZ, but emotions are harder to repair in me, gamma harder to sustain, takes more work to effect the same amount of healing. Plus, to be honest, after awhile you get used to the change in stress and mood after biofeedback and so don’t feel the improvement as dramatically anymore.

Still, although, I am having problems with blocking my emotions, I am much better off with weekly gamma brainwave biofeedback than without. It has helped me unblock, feel, and process my emotions faster and easier than if I had not had it.

I know the effect of not having biofeedback in the gamma range because for the first six months of last year, we switched to regular brain biofeedback, and I felt like I was on that rudderless ship stuck between skyscraper-tall swells in an endless sea.

It’s still not easy now navigating these erratic swells of emotion, but gamma makes it less scary, less stressful, and my neurodoc adjusting his therapeutic methodology has helped me enormously too.

Brain Health

Reading Ground Zero: Observing my Reading After Brain Injury

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My Neurodoc is into the dribs and drabs method the last few months. For most of my post-brain injury years, I’ve roared ahead at top speed, first trying to get back as quickly as possible to my life, then to regain necessary skills as quickly as possible, then to normalize some skills and continue to drive hard to regain critical-to-me ones while at the same time to become financially independent.

Then last year happened. (Can’t believe 2014 is last year and not my current reality. So glad of it.) You cannot control other people; your health care and recovery are by necessity dependent on others. And when they don’t listen, you can either scream and stomp off, go with the flow and not heal much, or keep pushing. And pushing and pushing while your PTSD hits the stratosphere as parts of your recovery slow to a crawl.

At some point, I stopped driving hard. It was almost a relief to move into the frozen lane. My neurodoc was probably relieved too, for he felt a tad overwhelmed and he’d realized before me that pushing therapy could tip me over the edge emotionally.

As for me reading books and long form articles, it halted altogether. That’s why my neurodoc said we are starting from zero with respect to my reading. Anything I do is an improvement, no matter how small.

In his words: as a non-expert, he is “willing to brainstorm and prepared to present various strategies which may be helpful to people with brain injury.”

But first he needed to see what ground zero looks like. He had me read an article from the Wall Street Journal.

For several weeks, I have been reading a chapter to him every session from a book I know well: one of mine. I usually refresh my memory on the way there as to what the next chapter is about. You would think I’d have no problem recalling a book I lived with for years thinking, writing, revising, editing, publishing, and talking about. But nope. I do.

When I read a chapter of my book out loud, I do at least recognize the characters and scenes as I go along, and so I can read at a reasonable speed and put in intonation. In my neurodoc’s estimation, I read well, albeit this week with a few hiccups because I was tired and couldn’t put in as much effort in controlling my voice and reading.

But that’s reading work familiar to me.

This week I also read unfamiliar work: the WSJ article . . . well, after we went back and forth as he dithered about whether I should read out loud or silently. Your choice, I told him. You’re the one observing — you decide! OK, OK, he laughed. Out loud, he said. I began.

Oh boy, I was in trouble.

I had no previous knowledge of the text, and to my ears, it was immediately apparent. My voice was flat and hesitant. I wasn’t taking in the content.

I stopped. Do you want me to just read or read for comprehension, for integrating the information, I asked him. He decided on the latter.

I’ll pause here to say my neurodoc has this non-judgemental and calm aura. I knew I wasn’t going to have to manage pity or sympathetic glances or impatient interruptions. I also knew that when he pays attention he has insight few others do. He is one sharp dude. He’d listen, observe, ask questions to aid his understanding and perhaps if it fit into his dribs and drabs approach, ask questions to elicit my emotional responses. And he’d make matter-of-fact comments as well as encouraging ones.

This approach meant I wasn’t self-conscious when I began to read out loud the way I do silently. It was weird to hear my voice speak the way I read silently to myself, but he can’t help me unless he knows and understands my reality.

I restarted the second paragraph. And restarted it. And restarted it. Finally, my sputtering reading engine coughed into life, and I absorbed the content. I kept going in that flat, slow, hesitant reading voice for a little bit. Then I had to back up because once again I’d forgotten what the point was and needed to reread to integrate the beginning of the sentence and paragraph into what I was reading.

I began to fatigue.

I felt cold creep into my forehead. The very beginning of a concentration headache. I haven’t had one in eons. I was thinking I should stop when he told me to. Oh, thank God, I blurted out.

With the end of the cognitive effort, the concentration headache immediately receded.

He asked me what I was experiencing, what my interest level was. (Later, he would ask me to work on describing what I am experiencing exactly when I repeat.)

He saw that I was struggling to assimilate and integrate the text. He saw I was having memory issues. But he is not done observing. He will be considering other kinds of materials for me to read, like, for example, poetry, to see how I do with different levels and vocabulary. Ideally, it would be good to have someone assess my eye tracking and brain activity while I read to augment his direct clinical observations. I have to look for such a person.

Emotionally, having someone in reading hell with you makes you feel less crushed.

I don’t need to rely on myself anymore for initiative, for encouragement, for keeping going.

I’m truly not alone in this anymore.

Brain Biofeedback

Reading Rehab Take Umpteen After Brain Injury: My Neurodoc and I

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A new year, a new blogging direction. 2014 was a shit year, pardon my swearing. But really, I’m heartily glad to see the back of it. Bring on 2015! May it bring hope.

My brain biofeedback is continuing as usual, no dramatic changes in me from it; since my neurodoc changed direction right at the end of 2014, I’m going to blog on that instead from this week on.

Reading is the worst loss I have suffered from my brain injury — and maybe from the PTSD too. I don’t know. Back in 2005, the ADD Centre didn’t know if they could help me with that, but told me — and followed up with results — that they could help me with my concentration, and that should help my reading. They did more than improve my concentration, they also helped me with my memory and seeing the big picture, that is, being able to see things or a book’s plot progression beyond my immediate focus. They also helped improve my reading through enhancing gamma brainwaves. We also had me read subtitles during LORETA training. But I was unable to keep going to Mississauga for that advanced type of brain treatment; I don’t know if in the long term that would have improved my reading dramatically or not. They also had me read while using tDCS or I tried reading interlaced-text signs — that experiment didn’t last long because we stopped tDCS. It’s a time-limited treatment therapy. But overall I found talking during tDCS improved my speech far more and more quickly than reading during it improved my reading. Go figure.

Reading still frustrates me and remains a difficult cognitive task. Task — that word tells you everything you need to know about my reading. It’s no longer a joy, an escape, a way to satiate my curiosity. It’s a task.

I don’t want it to be a task any more.

I want it to be a joy and an escape. Again. As it was before that horrid day 9 days short of 15 years ago.

I have asked my neurodoc for help with my reading before. But he informed me it was not his expertise, and like most physicians, and unlike my Dad, if it’s not in his bailiwick, he fobs it off to others. Actually, his response is better than the usual response by physicians, which is a shrug, a sorry-smile as they show you out the door, and no referral to anyone who may know.

One day in 2014 I finally got him to agree to help me himself. That didn’t last long though. I tried again. Again I got a yes, then nothing. Back to wanting me to see experts. Fuck experts. The first one he talked to way back in 2012 or 2013 gave him the aphasia website, as if he and I are incapable of finding that website. Last year, he wanted me to see one who is affiliated with JVS. Never!!!! I loathe JVS. Someone affiliated with them is going to get, at best, polite tolerance from me. (JVS told me I couldn’t write.)

One day late in 2014 I read him something about me relearning how to read when I was at the TRI. Because of my emotions waking up, I probably emoted about those days in a way perhaps I had too broken a brain to have been able to do so before.

He heard me.

I told him being able to read in flow is the single best way to de-stress me and to keep me from falling into crisis. I had told him this before. But that day . . .

He really heard me.

I don’t know why then and not before . . . But . . .

He told me just before Christmas that we would focus on reading in the new year.

He asked me if I had tried the Evelyn Wood method of reading. He wanted to know if following my finger below the text would help me keep my focus on the print or not. I couldn’t recall when I had tried that but recalled frustration. He asked me to try it over Christmas.

I didn’t.

As I told him when I spoke to him in the new year, I didn’t believe he was serious. I wasn’t going to put in the effort only for him to once again say I want you to see experts.

He was serious.

He still wants me to see experts, but he’s putting that on the back burner and going to focus on figuring out how to help me himself. He finally understands what I believe: only he has the ability (aside from myself) of seeing and dealing with the entirety of the problem.

It’s like an elephant. One expert can see the trunk and heal it. Another can see the leg and patch it up. But only he can see the entire elephant and see what needs to be done to heal the whole beast. And perhaps do it. That is my hope.

And so after talking to me about how I best (and least) learn and retain knowledge, he is now excited to help me. He thanked me too!!!

There is nothing more exciting in health care than to have a physician excited about learning about you and figuring out how to help you. Heck, nothing more exciting than entering unknown territory with an able and joy-filled partner.

Because he convinced me he was in it this time, I told him the more painful parts of the big picture.

The ADD Centre had helped me improve the cognitive process of reading by improving foundational processes, some more than others. They had also helped me in 2006 with the fear and anxiety around reading that had built up over the years before I saw them. But . . .

Things deteriorated.


Well . . .

Reading is an extremely complex cognitive process that is harder to restore than any of the others, I think.

People think: literacy = reading. It doesn’t. Reading is more than just being literate, yet most reading rehab is essentially regaining literacy and learning study methods. They forget the actual cognition and emotion and psychology of reading.

Reading is foundational to being able to study, never mind just escape into a good book. Reading at the level one is writing is essential. It is the number one thing to success as a writer in being able to write at the level you want to. My writing is miles ahead of my reading.

Not being able to read after a lifetime of being able to, is disheartening. And frustrating. And then devastating. In the face of my frustration, people didn’t know what to say or do; they wanted to make me feel better instead of working with me to make it better. That made me feel worse.

Reading was an unconscious core part of my identity. And so one day this happened.

I had to admit to my neurodoc (what I’m sure others had sussed out but either said nothing to me or did not broach the topic full on) that I was no longer reading books. Not print books. Not ebooks. I was reading no books.

In an effort to kickstart my reading on my own, I began to start our sessions with me reading a chapter from one of my books out loud to him. That is the only book I’m reading.

And on that note, I’m ending this blog post.


We’re discussing reading on January 12th’s #ABIchat. Please join us.


Christmas Break From Health Care

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With the way the Christmas and New Year’s dates fall, I’ll be off from some of my health care appointments three weeks instead of two. Most times I looked forward to a break, some years I even tried to extend it, but it’s a measure of how much my routine sustains me these days that I’m not looking forward to this Christmas’s time off. This is probably because my health care team provide me with most of my emotional support; with my PTSD in full blow and emotions up and down like some psychotic swing, I can no longer manage sans continual emotional support in the way I used to. That’s probably because being detached, as I was most of the time after my brain injury, is like an injury-built protective barrier against the lack of emotional support. But once that detachment waned, no more protection. Peachy.

Luckily, my neurodoc and I decided at the end of November that I should lay off the omega 3-6-9 oil; slowly, slowly the intensity of the emotional swing has relented. And now I’m more and more detached again. This will help me get through the holidays; I may even welcome the break like I usually do, see it as a chance to work on my photos, explore, whatever.

Well, maybe.

It would probably help if I could stay off the TTC as well during this time. The stress on us cognitively challenged keeps rising as CEO Byford and TTC management ignore the needs of our population when making their “improvements.” Unlike the good changes, like cleaning up the subway, these “improvements” only serve to make the subway harder to navigate and more anxiety provoking. I ought to write a blog post. Oh yeah, I did on the first “improvement.”

Brain Biofeedback

Novelling Can Help Only So Much With PTSD

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Writing is good for me. Writing a novel during NaNoWriMo is exciting and takes me out of the reality of my PTSD and brain injury. But writing can only do so much. And when reality intrudes in the form of a requested conversation with one’s insurance broker, the heart can go a little wonky.

I like my insurance broker; I’ve always enjoyed conversing with him. But I hate insurance companies. My neurodoc asked me when I first began to hate them — apparently “hate” is a clue that insurance companies and any mention of them are a trigger for my PTSD. I had to think about his question. I didn’t hate them after my first encounter with them when I was in a car crash in 1991. I saw them first as a partner to help me get better then later as an adversary.

By the year 2000, insurance companies and their regulations under Ontario law had changed drastically. Instead of a let’s-get-you-better attitude, the person who answered the phone when I called after my 2000 crash, made out like she was taking my claim while giving me the runaround. Just making the claim in 2000 was hell for me. (Making a claim under current Ontario law is much, much worse.)

That’s when I began to hate them.

I suppose I would’ve been all right if I’d spoken to my broker himself, whom I’ve known for decades. But I was put through to a staff member, someone I didn’t know. Not good for someone with a brain injury. We like the familiar. We want to talk to the person we know. Then she was asking me questions in order to update my file. All perfectly reasonable. My traumatized brain thought otherwise. I struggled not to bite her head off as inside I screamed, I want to get off the phone! Now! Somehow I answered her questions and later I spoke to my neurodoc who told me that that call was a huge trigger. Huge!


I had dreams that night, and this week, though I was in what I call my happy neutral place, the biofeedback sensors told a different story. My heart rate didn’t even try to sync with my breathing. Instead it trotted along at about 109 then zipped up to as high as 189 and as low as 37, over and over. Geeze.

You know, this is why we have emotions: to tell us how others and events are affecting us. When our affect is flat or our emotions inconsistent or AWOL, we think we’re doing okay. And then wonder why we have physical issues like gaining weight (or losing it). I’m thankful I have the biofeedback and my neurodoc to do a reality check when my emotions aren’t giving me these crucial clues.