Personal

Divorce Is A Scream

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Divorce is a scream. A scream of one ignited by the unhappiness of the other one looking for salve elsewhere instead of within the two as promised before the reverend in the time when the two joyously united to each other, together.

That’s the problem with divorce.

Marriage requires both to permit it.

Divorce thuds into one’s life. One decides for the two without permission.

Too bad, so sad. Bye. Sayonara. I don’t love ya anymore, so you see I gotta leave you destitute, alone in your injury, no help from me to get better. Cause you’re not. Going to get better.

I’ve seen the left behind be catatonic from the thud, from the other one changing their entire life into a single one, without therapeutic attempt to rejoin, in a different home, with diminished finances, alone. I didn’t go catatonic. I had a brain injury. My affect screamed awake. Then shut off, and in doing so saved me. No, divorce was the least of my problems, and I wasn’t going to deal with it. I was too moved by his commitment to his in-sickness marriage vow. I was too much in awe of his love surrounding me, his sense of responsibility from being the driver in the multi-car crash that severely injured me. So much love and commitment he had to leave me. So I told my husband, the one who abhorred paperwork and left me to deal with all the legal papers and accounts, that if he wanted a divorce, he had to file for it. And pay for it.

I rolled on in my brain injury recovery. I filed away the divorce paper when it arrived years later. And continued on in my recovery. How does one celebrate a divorce? How does one mourn a divorce? Was his mother happy? Did she approve he remarried, a Catholic this time without any weird ethnic background and not coming from the big bad city of Toronto? His father was tickled pink, he of the psychopathic mind who revelled in pitting one loved one against another. Am I better off without a man who when the going got tough, grabbed the pricey artwork and ran then manipulated out of paying spousal support while improving his financial status? His parents sure raised him right.

That first night after he left, with my dog by my side who understood love, I felt better. It’s hell to be with another who blames you for his state of mind, who whines, “I’m happy when I’m away from you.” Yeah, that’s what happens when you can escape a problem. Unlike me. Wherever I go, the brain injury goes with me.

He saw only the problem, he saw no solution. He knew I’d had a brain injury. Didn’t pretend it didn’t exist. He called my psychiatrist and psychologist to, what?, complain? They refused to tell me what he said; I didn’t need to be burdened. They were sympathetic and protective of me. He didn’t once attend rehab with me, talk to the therapists, work with me to get better. Why would he when he and everyone who loved me so much could predict my future with deadly accuracy: a burden. Not better.

It’s been over a decade. Time to treat myself as a single. By choice.

Ice cream mango coconut rice pudding

Brain Health

BIST ABI Acceptance Series, Week Two, A Review

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This month, the Brain Injury Society Of Toronto is holding a series of four information sessions about acquired brain injury (ABI) acceptance, adjustment, strategies, and resources. I attended the second one on acceptance, presented by Dr. Bojana Budisin, Neuropsychologist and Dr. Liesel-Ann Meusel, Neuropsychologist, of Lad and Associates in Toronto.The topic was “Learning Strategies for Adjustment and Acceptance – addressing the topic of grief, acceptance and adjustment.” The turnout was much higher than expected, probably for the same reason my posts on grief receive more views than any other of my posts on Psychology Today: Grief is a topic rarely addressed in our rehab and most therapists don’t seem to know how to treat the extraordinary grief of brain injury.

Acceptance over and under grief. Text image.

They began by asking for definitions of acceptance and printing them in large easily-seen capital letters on a giant piece of paper stuck to the wall. There was no shortage of suggestions.

  • Reality as it is
  • No criticism
  • Satisfied with where you are
  • No self-judgement
  • Not judgemental
  • Work with me
  • Respect decisions
  • Respect
  • Loving and liking yourself as you are now
  • Life changes
  • Reduction of anger
  • Letting go
  • Tolerance
  • Not imposed
  • Working with what you have
  • Open to change

It’s interesting that, although the presenters were wanting to focus on our acceptance of ourselves and our brain injury, the word equally raises the traumatic experience of others not accepting nor respecting us.

Budisin and Meusel then showed their word cloud divided into positive definitions and ones associated with negative connotations (in square brackets below):

  • Letting go
  • Consenting to
  • Letting be
  • Opening up
  • [Capitulating]
  • Giving permission
  • Stopping the fight
  • [Acquiescing]
  • [Approval]
  • [Giving up]
  • Giving permission
  • Make space for
  • Allowing
  • Adjustment
  • Make peace with
  • Assent

Acceptance is not saying we give up and stay where we are. Let’s learn to be with those awful emotions as they are so that we can shift our energy to more productive activities.

They emphasized that this session was about dealing with what we can control: ourselves. There are two problems with that concept as it relates to people with brain injury. After ABI and because of the injury, more for some than others, depending on the areas injured, we can’t control ourselves. Can you control a short circuit through willpower or behavioural means? Same idea with misfiring or not firing neurons. When neurons fire randomly, it’s important to treat them neurophysiologically so that they begin to resync again, to regenerate, and in that way, we can regain control bit by bit. The other problem, as one participant noted, is that others impose their anxieties on us. We’re fine on our own pottering about at our own pace and within our lack of abilities, but when in the presence of people who don’t know how to treat ABI, or how to react to our injury-affected meins, they get all anxious. Then we do. It’s been a long time since I was badly affected by this imposition, and I wish back then I’d known others experienced being buffetted around by others anxieties and judgements, too.

Budisin and Meusel defined acceptance as, “. . . means allowing our thoughts and feelings to be as they are, regardless of whether they are pleasant and painful, opening up and making room for them, dropping the struggle with them and letting them come and go as they naturally do.”

They did an exercise demonstrating this principle. Imagine a ruminating thought and its accompanying feelings written on your palms. Now raise your palms to your eyes and hold them close. What can you see? Can you hear, attend, or see the people around you or talking to you? You’re probably more aware of your palms and what’s written on them. Your shoulders and neck are probably starting to hurt, too. This position mimics how dominant the ruminating thoughts and feelings are.

Now, lay your palms on your thighs, still imagining those thoughts and feelings are on them, and push down. And keep pushing. You’re probably starting to get tired. It’s like the exhaustion of pushing your thoughts and feelings away.

Now, rest your hands on your lap, palms up. This is letting the ruminating thoughts and feelings be. They exist. They’re there. But you’re not judging or pushing them away.

Some found this position anxiety provoking. It’s a position of vulnerability, of exposing your emotions to not just yourself but to others, too. And if there’s one thing people with ABI have learned is that we get judged and criticized and told our emotions are wrong — we’re not moving forward or getting over ourselves fast enough — or our emotions are lacking or inappropriate to the occasion. So exposing them is to invite judging. Who needs that‽

Holding one’s hands up is familiar and shielding, as well. Budisin and Meusel didn’t have much to say on this reaction. Their point was to show that letting be is more restful, and it should be. There’s that should word! I was told during rehab to not use the “should” word but perhaps “ought to” instead. Yet in dealing with emotions and grief after ABI, even though therapists are compassionate, we still get an awful lot of being told how to think and feel. Letting be should also apply to others so that we can let be safely.

This is partly why teaching people with ABI acceptance without including community takes years and why I come across people who look like they have it but the moment I trigger their real emotions, they’re pouring their pain out all over me. Not a problem, just rather unexpected and disorienting at the amount of unheard pain I’m suddenly being drowned in. When we’re taught that the only way we’ll be accepted is if we demonstrate acceptance, is it any wonder we learn to mask our true feelings? And then when someone comes along who’s willing to listen and believe, we let all of it out in one tidal wave of despair, pain, relief at being heard.

Budisin and Meusel’s second part of their acceptance definition was, “. . . gives us the skills to stop getting tangled up in our thoughts and feelings, to start thinking clearly and productively, to move forward with what is important to us.“

My very first thought was how does one untangle emotions when they’re being generated, or not generated at all, by injured neurons in a chaotic and disharmonious manner? Behaviour therapy like this is going to take forever without neurophysiological interventions. Even for people with simple anxiety, learning the skills is not easy. When after neuroplastic treatments, the brain is producing the brainwaves of relaxed, focused attention, then we have half a chance of learning and retaining the necessary skills. In conjunction with brain biofeedback or low-intensity light therapy and with the aid of audiovisual entrainment at the start of a learning-acceptance session, this kind of work would be healing and empowering to do.

A key point: our own concept of acceptance will at the end of the day differ from person to person. Accepting the non-acceptance by others is part of acceptance. Budisin emphasized that acceptance takes years and is not linear. It’s progression and regression.

Acceptance work is like dealing with quicksand. To survive it, you lie flat slowly and don’t fight the quicksand. It goes against every instinct. But by giving up fighting, you have more energy.

Suffering = pain x resistance.
Pain is physical or emotional.
Acceptance = taking away resistance.

I assume that means that suffering reduces down to:

Suffering = pain.

There are nine basic emotions for all humans across all cultures:

  • Love
  • Anger
  • Sadness
  • Fear
  • Disgust
  • Curiosity
  • Joy
  • Shock (can be good or bad)
  • Guilt/Shame

These emotions can feed each other. A single emotion can be broken down further, depending upon one’s life. We live in a world that emphasizes happiness and positivity, but only three of the basic emotions are positive in normal human experience. We have to learn how to manage the six “negative” ones.

Budisin and Meusel asked: Why do we need them?

They answered: Each signals to us that this is something we care about.

Emotions are data or signal beacons to something we care about. Better to feel them and label them accurately so that we can better discern the precise cause of our feelings and more accurately take steps to move forward. I thought of how I needed my health care professionals to help relearn how to identify emotions when they began to return after well over a decade of being absent, and how difficult it was when they either didn’t or simply labelled them all as anger and frustration or my injured emotional centres as depression. Accurate identification is the only way one can (a) relearn how to identify emotions and (b) be heard. When psychiatrists take the easy route of labelling them all as solely depression or anger, we lose out.

Budisin and Meusel used an iceberg analogy for emotions.

Iceberg

Anger often is like an iceberg. Others see our anger, the part of the iceberg that’s above the ocean. But so much more is underneath it, and that’s the primary, raw emotions that’s driving the anger. Those are the emotions we, all of us, need to listen to, the part of the iceberg that’s below the ocean surface. Anger is more complex than just anger.

What is anger?

Anger: protective nature. One feels energized and stronger. A bit out of control. Flight and fight. With anger, you can defend yourself and others around you. Ready to protect the raw, vulnerable emotions that’s driving it. Those raw emotions are often sadness, being hurt, being tricked, helpless, embarrassed, annoyed. If you remove the anger, you expose the vulnerable emotions. Those are the signal emotions. And those are the ones you want to acknowledge and work with. That’s why open palms creates anxiety as it reveals the vulnerable under-the-ocean iceberg.

But when health care professionals — especially psychiatrists who are the only ones covered by medicare and thus affordable — would rather avoid us or not deal with our issues or farm us out to “experts” who know just as little, how do you state your need? How do you safely show the signal emotions? How can you get them to hear us?

Budisin and Meusel moved on to grief.

Grief

Recognizing grief is complex because of the overlap with ABI and PTSD. That’s when we get the feeling of dealing with so much. That’s why therapists start chipping away at something so that they can reduce the overall load we’re carrying. Having a good conceptualization and understanding of what’s going on is important, and hopefully health care professionals will recognize that and tease out what is what. To do that, they’ll work in stages, eg, to get rid of acute symptoms then after that they’ll start addressing grief.

Phases of Grief
  • Denial
  • Anger
  • Bargaining
  • Disorganization
  • Despair
  • Depression
  • Acceptance

The aim of grief work is to process through the stages so as to reach acceptance but rarely is the process linear. It goes back and forth. Lasts for years.

Even at the end, acceptance can be partial and fluctuate.

Denial. Immediately after loss of self. I’m fine, and I can go back to normal life.

Anger. Frustration because of injustice and loss. Why me? What did I do wrong?

Bargain. What if I implement x then I can improve. Or if I just push through, things will resolve.

Disorganization. Trying to implement strategies leads to disorganization. Confusion. Who will I be? Exponential if also have injury-related confusion.

Despair. Loss of hope. Things will never get better. No change.

Depression. Like above.

Acceptance. Things are as they are. Accepting pieces of it.

A complication is a person goes through this process as a new self in order to become a new new self.

Acceptance involves developing skills that help you avoid getting all tangled up and carried away by painful thoughts. I notice I’m having the thought that x. This noticing creates a bit of distance. Also you can write it down to create distance. When you get tangled up, you get strong emotional reactions.

Thoughts are not always as true as they feel. We see things as we are not as they are.

Weather Report

One idea Budisin talked about is to learn to sit with painful feelings and notice them like we notice the weather. Do a personal weather report to validate them and then focus on the present. Am I sunny or is there a storm raging inside or is it in between? Rainy with sun? But don’t think too much about this report. Simply summon the report, notice it, and let it be. They wrote in their handout:

“By sitting with uncomfortable and unpleasant feelings and sensations and letting them be as they are, you’ll come to find that they will invariably pass on their own, in time.”

Palms in lap.

The only practical idea I heard on how to grieve was in a question they briefly posed: Have you commemorated aspects of yourself before ABI? They didn’t expand on it nor spoke about how they do that with clients.

I didn’t stay until the end because the session went over time and I had to leave at its scheduled end. I was also quite tired. There was a lot to take in plus I was taking notes. The part I missed was a 15-minute video TED talk they showed.

The next day I began to have flashbacks to my insurance battle and the many, many ways kind-meaning therapists didn’t hear me when I had no emotions. I survived those awful, awful years because my affect was off, as I wrote in my book Concussion Is Brain Injury: Treating the Neurons and Me. Suddenly, the week of the info session, all the emotions a normal person would have had when I was fighting on six fronts (my ex, my family, my insurance company, the tort claim, my friends, and my injury plus trying to find treatments that actually worked to heal) barrelled in to my consciousness, sucking all the oxygen out of my life. They’ve waned this week in the face of having to deal with my schedule being disrupted and having to adjust to another new routine. Just another week in the life of a person with brain injury when they have only the minimum or don’t have at all the medical, community care, social, and emotional support they need.

Personal

Small Treats Combat Social Isolation

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Marshmallow kitten in a white chocolate foam in a chocolate cupI sit in a noisy café, sipping fresh, black coffee, eating a cream-filled pastry, writing in my iPhone. My brain pines for peace. My soul needs the treat, the semblance of normal life. My brain will recover; I’m going to be tired by the time I get home regardless of where I go, anyway.

They say that these little kinds of social connections, the brief encounter with a store cashier, the discussion of what coffee to drink with the barista, the fast-disappearing engagement with one’s TTC driver, alleviates loneliness. It isn’t only the big social gatherings that prevent loneliness. In fact, I would say that the big social gatherings in the absence of regular phone calls, text chats, coffee dates, email hellos, only accentuate the downward change in social status, the loss of normal relationships, and the intense isolation brain injury brings.

At the end of a very bad year, I turned my back on the fiction of big social gatherings and scrimping for the future and turned towards spending on the present to gain these many small moments of smiles and hellos with strangers who became known to me and me to them. Even though they don’t know my name.

Brain Health

Brain Injury Grief: The Experts Begin to Recognize and Define this Profound Loss

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The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.

Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”

I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.

Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”

I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?

She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”

I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.

Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…

“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.

“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”

Personal

Figuring out Brain Injury Grief

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I had to figure out how to bring my temperature down and stabilize my thermoregulation; I had to, have to continue, to figure out how to rehab my reading; I had to figure out how to persist in relearning skills, doing life in a new way long after bean counters in hospitals and insurance decided I no longer needed outpatient and community care. Do I have to figure out how to grieve brain injury, too?

In all things, I began with standard medical care, with learning the medical system’s usual way of approaching relearning, living with brain injury. When that showed itself to be completely inadequate, I sought better care that actually treated. They taught me things, but they too went only so far. After that, and also when I failed to find any help whatsoever for some problems, I had to seek the answer within myself from painfully pulling out old neurophysiology and psychology knowledge, willing my brain to absorb new knowledge from reading, and putting it all together through writing.

But I never thought I’d have to do that for grief!

I thought eventually I’d find someone who got it, who knew how to guide me through grieving the death of myself because they’d learnt it from experts and they’d worked with other people with brain injury. I was wrong.

Brain injury has been around for eons. Loss of self has been a known effect for eons.

So why is there no help‽

This is like hell ten times over.

There’s no help because the psychiatric model labels it depression. The neurophysiological model focuses on healing the physical brain. The therapist model extols the virtues of discovering who you are now. Friends and family model get sick of hearing the confusion, the pain, the repeating what-the-fuck-is-going-on-help-me! cry.

Eighteen years, two months, and seventeen days, and I’ve not had one consistent stretch of grief work. And I’m not alone. No wonder after a couple of decades of seemingly doing “well,” people keel over. Grief doesn’t disappear into happy positivity that the experts and family want us to leap into on the day of our diagnosis. It lurks until the work of relearning, of learning a new life, of becoming used to the routines of daily living, is done and brain space opens up. Or a bad event will throw the entire system into shock and grief flows back up like a magma flood.

What do you want, my neurodoc asked. I wanted my grief to be respected as real and different from depression and from grieving another human being; to be honoured with consistent healing work. I guess I’ll have to do that alone too. The only way I can think how is through my writing.

Personal

Running to Grief

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Watching 1 Mile To You. High school boy, runner. Loses his entire team in a bus accident. Girlfriend and friend, too. Runs to remember them. The faster he runs, the more he sees them. Remembers them. He doesn’t want to forget them.

His new coach asks:

What do you want? Your heart. The most important muscle in your body. Never rests. It remembers everything. I need your mind to know it. Your heart to know it.

He can look at pictures of his dead friend. Dead girlfriend. Text them. Watch video messages, see their smiles. And he remembers them.

He grieves.

But how do you grieve yourself? How do you grieve the reading slaughtered in the injury? How do you talk about lost reading like you talk about a dead girlfriend? Girlfriends who are gone don’t return distorted, damaged, done in. How do you grieve something you can’t look at, touch, watch, talk to, is a distorted, damaged, unfamiliar version of itself inside yourself? Not outside yourself. How do you grieve when you don’t want to remember yourself reading when it hurts so much? Yet the memory comes, and you remember you always saw yourself so long into the future holding a book, absorbed, silently slipping the pages over, one by one, living, breathing inside the story. You bang and bang on the doors of people to help you. To go back to that time when reading was just there and the future was certain. But no one can help though they try inside their own way.

It’s not coming back. You’re not coming back.

And then the expert calls it depression. Not grief.

Brain Health

Happy Christmas to All the Hurting

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Happy Christmas AmaryllisIt’s Christmas Day, the snow lays on the ground glistening and white. Sparkly icy flakes blow in crowds off roofs as the wind gusts into the face of walkers hurrying to get their Starbucks or Timmies. Cars hiss on the snow-wet roads, waiting alongside each other at red lights, impatient to get to Christmas breakfast or lunch or dinner, some enjoying the quicker commute others the waiting at the lights, delaying the family roar for a few more seconds.

Church walls block out the city noise. Candle flames vie with stained-glass sunlight as imperfect voices sing carols and greet each other joyfully before parting to their separate feasts. Or barren homes.

Life chatters, joy laughs, pots clang, children screech, grandparents help little hands rip paper, parents gulp down drinks, and the injured brain hides in the bathroom, driven there by conversations swirling around in an unintelligible cacophony of piercing pains. It’s either that, pleasing the family with the presence of the body without joy, the brain’s needs ignored, or sipping eggnog alone in the blessed quiet of one’s own home with no one reaching in.

If it’s one thing I’ve learned — again — from social isolation, part II, it’s that when you can’t get out, people in real life won’t reach in. A token email, a couple of messages, an offer to answer your call if you need anything without an offer to come over and bring coffee or health care, and then silence . . . until you can once more get out to where they are.

Christmas is no different.

Except that God, that Jesus, is always with you.

You can rage, cry, sniffle, marvel over a blue blue sky, take quiet pleasure in watching cardinals glare-hop outside your window, sink into a Netflix movie, and Jesus is always there with you to share in every emotion or lack. People say God keeps his promises. I don’t know. But one thing Jesus does not do that every human does: abandon the sufferer.

Pain drives people away. Pain and a broken brain invites human judgement and criticism. Pain and injury imprison you. But excluding, exquisitely painful suffering draws Jesus right in there behind the bars with you. Happy Christmas.

Brain Biofeedback

The Beast of Brain Injury Anger Shows Up During Biofeedback

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Rage, anger, fury: these are the emotions people with brain injury are excoriated for.

While I was in the middle of SMIRB last week, the next client walked in and actually TALKED TO ME! Like, was he blind?! Closed door. Electrode on head. Writing. Apparently, his need to know where the biofeedback trainer was trumped normal societal rules – he just had to open a closed door and ask a client hooked up to the computer a question.

Grrr.

Daily stressors from the usual TTC inaccessibility, usual self-centred, thoughtless commuters, usual Toronto lack of inclusive services for pedestrians blended with fatigue to grow aggravation, which sparked after the surprise of being walked in on. I blew up. I managed to keep my voice to a growl and told him I was busy. He shut the door.

Since my SMIRB screen lasts for 10 minutes, my trainer takes the opportunity to get stuff done or to go to the washroom (health care professionals should be told the day they sign up that they need iron bladders). When she returned, I managed to keep my powderkeg damp, but I was raging underneath and told her if she didn’t tell him not to do that again (it was the second time he’d walked in on me), I would walk in on him (that would end badly!). Everyone who works with people with brain injury are so cool. You’re growling and hissing and raging, and they’re like, OK, no problem. Totally unfazed.

The brain injury anger rarely shows itself since I began my hypothalamus fix, and when it does, it’s not quite as overtly volatile. And so this was the first time that I can recall I went from zero to the beast of brain injury anger while hooked up to the ADD Centre’s computer, the first time we had an opportunity to see how this kind of anger affects my muscle tension, heart rate, breathing, and brainwaves.

My trainer looked hopefully at the numbers. Um … My muscle tension was normal for me. My heart rate the same; my breathing unchanged. My busy brain, even in the harder 24–28Hz area we were training, was not off the charts. My Delta-Theta 2–5Hz had barely shifted from its level before his interruption. The SMR 12–15Hz waves hadn’t dropped percipitously. My trainer suggested maybe no change because I was in the middle of SMIRB, which is designed to get your irritating thoughts out of you. But I had to stop SMIRB because the beast was too strong for me to focus through it and write.

I did the busy brain biofeedback training screen after, working to enhance the brainwaves of relaxed, focused attention and inhibit busy brain and Delta-Theta, and right near the end of the three minutes, I could feel the beast ease back. However, I remained a powderkeg.

So now I’m wondering where in the brain does brain-injury anger reside, and I am kind of curious that it doesn’t seem to tense my muscles … or enough for the sensors to pick it up. Earlier in the session, when I had sat back during the deep breathing HRV screen, she had noted that my muscle tension rises quickly and drops just as quickly. So that might account for seeing no change. Yet …

… the beast didn’t disappear completely and my aggravation remained. My muscle tension should logically therefore still be up. But nope.

I remained aggravated not only because of the fucking TTC and city being so inaccessible while crowing about how progressive they are, but also because I’m so very tired. New ability, emotional overload, flashbacks, working on Concussion Is Brain Injury crowdfunding campaign…

And now this puzzle.

It needs a research study. To me, it says that medical and psychological professionals’ tendency to lump all kinds of anger in the same basket is just wrong. It’s long past time to study the beast of brain-injury anger.

Switching topics: last week I noted the very busy screen I had to use. Well, we’re sticking with it because no other biofeedback screen has enough room for all the parameters – enhance two brainwave frequencies, inhibit two brainwave frequencies, monitor heart rate, keep breathing even, keep muscle tension down. There’s so much info, it takes up two displays. Sigh.

  
My trainer watches the second display on the right for me. This two-display screen also forces me to work on my brainwaves while stressed, which after many, many sessions of using it will actually help me cope better sans conscious thinking with stressful situations. Is good but UGH!!!

Brain Biofeedback

A Crisis, A Call, A Camera

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My health care team is not really a team: it’s three parts linked through me, the one with the injured brain, the healing brain, the brain that has suddenly sent them into crisis mode while freaking me out. I have tried for years to get the disparate parts of my team to talk together. I’ve only succeeded once or twice with two parts like COTA and CCAC people meeting with me around my kitchen table (homecare is literally at-home care, and OMG, what a wonderful non-draining way to get care, that allows you to do more in a day than just attend an appointment, but I digress). Or when I got my neurodoc and Dr. Lynda Thompson of the ADD Centre to talk on the phone about me over a year ago.

Every now and then, I try to get my neurodoc to speak to the other members of the team, maybe CCAC or maybe the ADD Centre. The idea of all three entities holding a conference call would be utopia. Anyway, my efforts usually fail. The usual reason is no time, too busy, schedules don’t mesh or zero communication happens — missed calls — and then they forget to retry. So I struggle along.

Then one day I was informed of something, which I can’t write about yet because I’m still trying to negotiate a reversal. Suddenly: flurries of calls were made between my neurodoc and some members of my team.

Then I was scheduled for a full-cap assessment in a few weeks, and so I began the Herculean task of arranging a post-assessment call between my neurodoc and the ADD Centre to co-ordinate my reading program based on that assessment. O.M.G. I wanted to kill myself. Just to get a tentative date, I had to use email with the ADD Centre and a combination of voice mail and in-person methods with my neurodoc (and email copies that he kind of, sort of read because he doesn’t do emails you know) to be the go-between.

That became moot last week because my brain decided to get real plastic and do what-to-me is bizarre stuff after the ADD Centre changed the biofeedback protocol back to CZ. The bizarre stuff has happened last year but went away, or so I foolishly, wishfully thought. And I’ve done CZ training before and SMR training. Not my favourite place because of memories of the emotional tsunami that hit me back in 2005 (it was rectified immediately).

But this was different.

Suddenly, my neurodoc got on the horn and called the ADD Centre. The usual missed connections ensued. But there was no forgetting to retry this time. (CCAC should have been in on this action too. But, well, they have other issues on their mind.) Thank God! Because what is happening is WEIRD.

Why does it take a crisis to get health care professionals to speak with each other? Why can’t they do that as part of their regular practice to co-ordinate care, to keep in regular or at least annual touch to ensure they are staying on the same page, and to ensure no-one is missing out on major problems?

A client presents differently to different health care providers. Co-ordinated care with the GP at the centre and the patient kept fully engaged is essential when treating complex and/or multiple problems. As for trying to keep my GP in the loop . . . Well, I don’t know what to do about that systemic health care problem.

I have, in the past, kept my GP informed, but with all the emotional and PTSD difficulties, I haven’t since last year. It’s too bad that when you drop out of being an engaged patient, not even your GP will intervene, take the initiative, and call you, that is, boss you around so that you’ll get the things necessary for your health done. I miss my old CCAC person. She was good at bossing me while ensuring I didn’t get overwhelmed. Sigh.

Luckily, the Toronto Pan American 2015 Games began, and they have been a welcome distraction. I took my camera out for a spin at the free sailing races off of Sugar Beach and began checking out the cultural venues. I took photos.

Watching the Races