After a drought of online reviews, I’m blessed with a third five-star review! No words just a heart of thanks to the reviewers who saw my book in their email subscriptions, bought it, read it, and reviewed it.
I read an entire chapter, start to finish, using Lindamood-Bell visualizing and verbalizing method. First time since my brain injury. OMG!
I got to the point of being able to read an entire chapter of The Screwtape Letters about 2 months ago but not in one go. Instead, I read for 5 minutes at a time or paragraph by paragraph or a page at a time. I finally got up to reading chapter 1.5 pages by 1.5 pages on July 1, 2019. But I didn’t progress to reading 2 pages until July 20th. That was just one page off from reading an entire chapter in one go.
What I mean by one go is: Start reading the text, create concept imagery as I read, redo concept imagery if I’m “seeing” text in my head instead of a still image or mini movie, keep going like that until I get to the final word of the chapter, not pausing once.
Then do word summary for entire chapter: tell myself out loud what I just read by seeing the imagery in my mind and recall it from the images.
Then describe out loud to myself the main idea. I always stumble on this one. Today, I remembered the three-key-points method on my second try and got it!
Then ask myself: what do you conclude, infer, predict? Those questions, as always, help me see ideas or inferences I hadn’t seen when creating imagery and summarizing.
Fucking amazing. Yeah, it’s a short chapter. Yeah, it’s taken me till Chapter 23 of the third book I’ve read since I relearnt to read, to accomplish this. But like all the chapters of The Screwtape Letters, it’s dense with ideas, visuals, sounds, tastes, smells and, in this chapter, long strings of adjectives — I had to create an image for each adjective to help me remember what Screwtape thinks of this latest person in the patient’s life.
Lindamood-Bell instructed me that when I advance to the next level — whether from sentence to sentence by sentence or from paragraph by paragraph to page by page — I would not recall 100 percent. Sixty would be awesome. So during the word summary, having to check back to the text three times to remind myself of details or an entire argument and see imagery pop back up into consciousness so that I could close the book and recall it in word summary, didn’t faze me.
I can’t believe that with my brain injury, the huge setback from the Shingrix vaccine, and current rise of major stress, I finally read with comprehension from start to finish, without loss of focus, one whole chapter. Wow. Sweet.
And the professionals who specialize in brain injury who told me I had to accept I couldn’t read anymore and had to use strategies to make do with language going in and immediately exiting my memory and comprehension, were wrong wrong wrong. That’s why I wrote Concussion Is Brain Injury: Treating the Neurons and Me and am updating its companion web pages with my newly acquired knowledge on how to restore reading. Medical professionals are sweet people, but they’re WRONG, and you need to stop listening to them, go out, and find a way to get your book reading back — because you deserve to feel this awesomeness.
BrainGirlAndCat does video blogging. She used to be on Twitter, and I came to know her through BIST, I think. The Brain Injury Society of Toronto recently tweeted out her latest video.
2019-07-08, 9:45 AM
“Every day is like Ground Hog Day,” From her home in Ireland, Brain Girl shares the story about the emotions that come up after finally getting an neuropsych assessment 7 years after her TBI. @ShireenJ
– we think you may have some things to say about this
It took me awhile to get to it. I have routines, try to schedule tasks or ToDos, try to keep to my schedule, but maybe it would be easier if my life was like Ground Hog Day. It isn’t.
There’s always something. A jackass, always one around in a city. Mice peeking out at me. Drivers whizzing up to the pedestrian crossing to block me safely crossing just in case they can insert themselves into a stream of traffic. My brain suddenly deciding not to read. Me having to think hard about which part of my routine I forgot and fix that to get reading again because no health care professional nor anyone I know in my social life wants to learn my health care routines because, you know, learning outside the box is hard and only the person with brain injury should have to do that. Giving up reading and practically the next day being catapulted into a life-altering reading comprehension program. Receiving my very first review of my revised concussion book. Promised money not coming through and digging through pockets and counting dimes because I really gotta have my coffee. Back in the early brain injury day, it would be creating minor fires or floods because of my slow processing. Now I just create floods because I still can’t process what my senses are telling me and problem solve quickly enough. Fun times cleaning up instead of staying in my usual routine . . . well, when does my usual routine stay monotonously the same? People suddenly pop into my life, change my routine, sometimes disrupt it, then disappear. Definitely not Ground Hog Day around here.
I can so identify with lack of joy, though. I almost had it. Almost touched it. Almost.
Watching the Raptors ascend to the NBA Finals and, after a heart-fluttering and TV-remote-power-button-workout Game Six, the championship, I began to reconnect to faint traces of my old self. My Junior High self loved basketball. I’d avoid other sports in gym whenever I could. Volleyball locked up my finger joints. Floor hockey was a game of avoiding vicious strikes to the shins. Baseball always began with the school meeting with my parents to say, yes, she can participate. But basketball was different. I didn’t need to get permission. I didn’t need to watch out for the real athletes. And I could dunk that ball, too! It was fun!
My high school hosted a basketball tournament and asked for volunteers to billet out-of-province players. You’d better believe I was volunteering my home and attending every game I could!
The problem with car crashes is that seatbelt injuries bugger up your shoulders and whiplash stiffens and straightens your neck into agonizing rigidity. You can’t dunk a ball easily after that — or launch one. But what really separated me from my love of basketball was my brain injury.
Memory connects us to our self. Injuries stop you from playing for long enough that memory fades and brain injury plays havoc with your identity so that you forget you used to love the game. And broadcast TV relegates games to channels only the well off can pay for, further severing any identity-connecting remnants. I remember it now as if those memories belong to another person, as if that person was telling me stories — except for one memory. My twelve-year-old self in the school gym dunking a basket, wishing this could go on forever.
Something we’re all familiar with — waiting for a call. But after brain injury, it began to be a regular, daily, soul-sucking occurrence.
“I’ll call you back.”
Did they get my message?
“She’s gone to bed.” It’s 9:00 pm.
Is my phone connected? Picks up and hears dial tone.
I feel so stupid, I thought they were ill. When did they get so busy? I miss our calls. I guess they don’t.
“Yes, we got your fax. We’ll call you when the doctor has an opening.”
How many months has it been?
I learnt that when you have a brain injury, people really don’t want to talk to you. Communication is a struggle, and the therapists can only help you so much when others don’t want to learn. But I also learnt that for medical appointments, reports, tests, you just have to gear up your loins and keep at it. Waiting is exhausting but gets you at the back of the line for extremely underfunded, under-resourced, and low-knowledge brain injury care. Bugging turns into a fatiguing full-time job but gets you the appointments and tests you need or you have to go through to get to the health care you need.
That feeling when you waited for a phone call that you knew deep down wouldn’t come but you waited anyway.
— Shireen Jeejeebhoy (@ShireenJ) May 1, 2019
I haven’t had to wait for a call for a long time. I’ve changed my way of doing things so that I no longer wait for what’s not coming.
Until this week.
This call was regular as clockwork for years until the other person decided not to call last week. And didn’t tell me they weren’t going to. After I texted and called, they finally replied to say if they didn’t call this week, not to call them. So I waited. I didn’t know where their mind was, whether they’d call or not. I knew that their health had taken a downturn because of the usual medical fuckup. Between underpaying doctors for chronic care cases and doctors being unobservant and intellectually lazy, care of complex problems is abysmal. But through all our ups and downs, we had persevered in our regular calls. Apparently no more.
I waited. The phone never rang. I got the message. Life sucks, and I carry on.
I’m being a dutiful and safe adult and getting my shots. I’ve had my pneumonia one, Prevnar 13, and the two Shingrix ones, for shingles. Next up is my tetanus booster, and I’m seriously wondering: do I hafta‽ I will get it, but I need a few weeks of my health back first.
Brain injury and drugs don’t mix well. Medications don’t work like they’re supposed to when the neurons are damaged. Makes sense, actually. How can broken neurons respond normally to medication changing brain chemistry? Well, the same seems to hold true for vaccines in my single-subject study of one — me.
I’d anticipated I’d be tired and would take a month to get back my energy. And I am getting better more and more each day after the Shingrix booster (which was in the last week of March). But I didn’t anticipate all the effing side effects. Thinking back on it, those, too, make sense because we know brain injury causes an inflammatory immune response, which I touched on in my book Concussion Is Brain Injury: Treating the Neurons and Me. The Shingrix vaccine is very effective because it causes a strong immune response. As a result, I suffered a regression in my strength, my emotional regulation, my stamina, my thermoregulation, my cognitive functioning (reading, memory, problem solving all went downhill and are returning now), and my writing disappeared for a month. Made it kind of hard to blog or even get on Twitter when the latter made me so dizzy, I wanted to barf.
I very much needed homecare, just like I did after eye surgery. But physicians remain so uninformed about brain injury that they assume that something that doesn’t necessitate homecare in the usual patient shouldn’t in one with brain injury. Not true.
I’m coming out the other side. And this awful month has made me fear getting another vaccine. But the threat of shingles in the eyes is worse. Tetanus with what it does to you is more terrifying. And I’ve had pneumonia enough times to choose month-long Prevnar 13 effects of fatigue and emotional dysregulation over pneumonia’s life-threatening gift of days and days of it being hard to breathe to point of scary and then a month to recover and function again.
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.
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
- Loving and liking yourself as you are now
- Life changes
- Reduction of anger
- Letting go
- 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
- Giving permission
- Stopping the fight
- [Giving up]
- Giving permission
- Make space for
- Make peace with
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:
- Shock (can be good or bad)
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.
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.
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
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.
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.
As regular readers may know, like too many people with brain injury, I have thermoregulation issues. That means I’ve run too hot for over a decade. (I write about possible reasons why in my book Concussion Is Brain Injury.) But I haven’t talked about my cold feet and the strange phenomenon of being far too hot in my torso and head and far too cold in my feet and legs. My acupuncturist used to rebalance the heat so I was properly warm head to toe. The treatment never lasted too long, and back I’d go to being hot and cold in the same body.
I didn’t do much for my cold feet because it was the heat that posed the danger to me and sent me to the ER back in 2007. But the heat has cooled down year after year to closer to normal levels with the neuroplastic treatments I’ve been receiving. So I’ve been noticing more the cold in my feet and legs. For the last little while, the cold has worsened in my feet; nightly it begins to creep up my calves to my knees. I feel like I’m slowly turning into ice from the bottom up. It’s always way worse at night (at the opposite end of the night as the heat was).
The laser therapy clinic I go to has recently retained a new doctor, and he decided we should rule out blocked or spastic arteries being the cause. I heard nothing then suddenly I was given 24-hours notice to go to the vascular lab at the hospital I have traumatic memories of. Unbelievably, the lab was on the same floor as the behavioural cardiologist I went to for a few visits in one of those utterly futile attempts to do something about my heart (hence, one source of grief). I also didn’t know how I was going to navigate this hospital, which is normally a zoo, with my new vision. My brain still demands help remapping all first-time-since-the-surgery venues. Sigh. And indoor spaces with people moving in all different directions and sound bouncing loudly off surfaces makes it harder than outdoor spaces.
But no matter, I asked for help at the info desk. Getting a brain injury means you’d better get used to asking for help over and over and expecting you’ll have to negotiate for it, too, almost every time and forging into protracted negotiation that’ll come with a price when people say no. But I digress.
I received help and even better, the place was like a morgue. I have no idea how I lucked out! It made navigating the space infinitely easier. The weird thing is that the place seemed a lot smaller than before my eye surgery. It’s like having true binocular vision has shrunk spaces and even devices like my iPhone in my perception.
The vascular lab takes your blood pressure super quick in your arms, legs, ankles. An ultrasound wand is faster than regular blood pressure equipment! Then the technician begins to sound your arteries with ultrasound to produce colour pictures of your blood flow with the grey landscape of your arteries and surrounding tissues. Blue for 24 cm/s; red for -24 cm/s. Every artery she found, she’d listen to the blood flow. Hearing the strong beating whoosh whoosh of my blood pumping through my abdominal aorta, arteries extending into my thighs, arteries behind my knees, was pretty sweet. The strength lessened on my ankles and the arteries in my feet were very difficult to find. Ultrasound needs fat to bounce off to create a picture of the arteries, and feet don’t have fat up top (or at least mine don’t). No beat. Ten percent of the population apparently has no discernible pulse in their feet. Welcome to the ten, Shireen! Even the beat from a couple of points on my ankles sounded like it came from far off and was high pitched unlike the arteries at the other end of my legs. Their beat was deep, like a bass or baritone.
What did this all mean? I have “absolutely gorgeous arteries.” My arteries aren’t the reason for the cold in my feet and creeping up my legs.
Since the low-intensity light therapy (laser therapy) over the bottom part of the spine warms up my feet and keeps the ice from creeping up at night, the nerves coming out of the spine there were probably affected. The lap belt would’ve cinched after the first impact in the car crash. It would’ve stayed cinched during the next two impacts, pressing into my body. Peachy. Cranial nerves stretched, reducing my saliva, increasing risk of cavities sans me knowing because no one thought to look nor monitor. And looks like same with spinal nerves where the lap belt was and no one thought to look nor go over the possible sequelae and what I should do about them, like wear socks to bed. I’d never had to before so didn’t think about it until I heard of someone doing that a couple years ago.
And now today, I have a light therapy home unit I can use to keep my feet warmer and a clinic to go to where they can help me deal with these perplexing issues. Brain injury doesn’t arrive alone. It comes with friends who need treatment, too.
It’s been a year of painted brains, painted masks showing the experience of injured brains, and no change. Awareness gets you nowhere, it seems. It’s been a year of screaming for help, giving up, and only then getting effective reading comprehension restoration and grief therapy. The irritating reality-denying be-positive messaging finally stopped, and the healing effects of getting the crucial help I’ve been seeking for my reading for almost two decades began.
I wish though I hadn’t had to yell and beg for the help I needed over and over and over and over. I wish people had had the courage and stamina to support me from the start in my recovery. I wish health care professionals had the excitement in their hearts to ditch the neglectful standard medical care of brain injury and innovate so as to give innocent people their lives back.
I hate brain injury. I hate that I had to pay the price of being traumatized to get the effective treatments and support I needed. Why are people so loathe to help the injured?