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A blog post about living with traumatic brain injury - some familiar themes


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I'm not sure everyone can relate to this, but hEr talk of isolating herself, and of difficulty in social settings, might ring true for some.




In the Presence of Catastrophe

The moral of the story – before the story has even been told We must be present for each other

The trauma of brain injury can trigger what Kurt Goldstein  called a “catastrophic reaction.” Yehuda Ben-Yishay explains: It “is not a conscious phenomenon. Rather, it is the expression of the protective mechanisms of the organism… the behavioral manifestation of a threat to the person’s very ‘existence,’ due to the failure to cope.… By avoiding…new experiences and sticking to the familiar or the routine, [individuals with brain injury] minimize the chances for experiencing catastrophic responses”[ii]


The Dancing Satyr (demon)  3rd-2nd centuries BC

Photo credit: The Dancing Satyr, Laurie Rippon (2003). Do not reproduce without permission and credit line.

As a survivor, you know only too well that brain injury can be catastrophic. You are vulnerable and easily overwhelmed by the world outside your safe comfort zone. When you do venture out, you find that your old “friends” have deserted you. You’re in pain, confused, and so, so tired. “Why did it happen to me?” “No one understands.” “The doctors don’t care.” Like most of us with brain injuries, you avoid that world and retreat into yourself as if into a cocoon, in order to heal in safety. And although you may prefer isolation to catastrophe, they both leave you so, so lonely.

You need someone to be there for you

It takes time to make the shift from looking inward to reaching outward. When we turn away from the compelling story of ourselves – our loss or anger, our theories or solutions – we can find the unexpected: a sense of possibility, compassion, and community.

Some people do it naturally. You sense it when you’re with them – fully present, calm, empathic. Well, I’m not that someone, yet. I interrupt, blurt things out (not considering the consequences), or assume I understand exactly what you’re saying (before you’ve said it). I am able to recognize my behavior when I’m acting this way, but not before the thoughts jump from my head, to the tip of my tongue, and out my mouth. Maybe I lost my “self-control gene” when I was injured, or maybe I never had one. It really doesn’t matter which.

We all need compassion

I’ve always been a loner, finding it easier to engage with ideas than people. Maybe because of my TBI (or my chutzpah) I always try to change the world – stand up and be counted, right the wrongs, and combat ignorance. In reality, my days are often spent at home in front of the computer, virtually connected to the world but also apart from it. In a way, it brings me back to my “catastrophic” cocoon.

As an outsider looking in, I see that one of my big challenges is empathy – putting myself in your shoes, seeing things through your eyes. I have to listen quietly – still my mind, carefully look at you looking at me, and pause, in order to be fully engaged with your mind. Every day I try to face these challenges, put what I know into action, and remember to be open, so I can find my own unexpected – living compassionately rather than tilting at windmills.

It’s hard to be present for others

I so admire those who walk in silence, refrain from answers, absorb the world and how others see it. It is a gift. I must remember, in the moment, that every time I interject “me” into a conversation, I risk losing “you.” Empathy is a powerful and empowering force.

Strong relationships are built on trust and balance. I get it. Sometimes you do want to know why or who, other times you need to know how. But most of the time you just want to be heard. Not every problem has an answer, questions are often rhetorical, and advice can be a pain in the neck.

When we care enough to see someone else’s pain, or hear their need for silent compassion, we step out of our cocoon. When we listen, quietly, we can help them, and ourselves, heal.




In reality, my days are often spent at home in front of the computer, virtually connected to the world but also apart from it.


In a way, it brings me back to my “catastrophic” cocoon.

2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

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