Shireen Jeejeebhoy

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
• 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.