Dancing Upside Down

The need for Understanding?

I am heading off to a reunion with friends with whom I share a deep bond of love. I am looking forward to it – looking forward to catching up with each other on the past 39 years of our lives.  These are supportive friends.  However, I am sure I will also get some “What the heck, you look fine to me!” comments.

With the last blog entry I did about acceptance of who I am now – post brain injury – and many other things that are going on in my life, I have been observing myself and thinking about what I want to communicate about having a traumatic brain injury, to whom, and especially why.  Why do I even feel a need to mention the brain injury?

People tend to get impatient with brain injury survivors.  “Move on already!  Your brain injury was x number of years ago!”  Unconsciously, people equate a brain injury with a broken bone or something like healing from knee surgery.

Outsiders cannot grasp how much a brain injury changes who a person is; how it changes one’s sense of self to the very core.  After an injury the brain just works different.  Or, in reality, it doesn’t work well in certain ways so a brain injured person has to learn work-arounds.  And work-arounds do not always work well.  They take far more energy and are still faulty because the tasks that a brain should just take care of automatically now have to be done manually.  A brain injury survivor can no longer count on herself in the way she used to.

For instance, pre brain injury I used to travel around the country for my work!  But now I find myself gripped with anxiety about this short 5 day trip.  I have had stress nightmares about suddenly it is almost time to go and I have forgotten to schedule any time to pack.

The problem here is twofold.  First, the anxiety itself; the speed at which the brain goes into anxiety, and the amplitude of it – that is due to the part of my brain that is damaged.  I cannot “just stay calm and relaxed – everything will be fine”.  That part of the brain, which others take for granted, does not work that way anymore.  I am constantly working to calm myself down.  But it takes a lot of effort, energy, and time – time which I would have rather spent on other things.

Secondly, forgetting to pack sounds silly and like just a funny dream.  But it is the kind of thing I actually could do!  Forget to do or even think about something absolutely obvious.  Sequencing does not work well in my brain so I miss steps – big steps some times.

Even if there are no obvious outward signs, any person with a brain injury works phenomenally hard to engage the world in a normal fashion – harder than anyone with an uninjured brain can imagine.

Brains remap very slowly.  5 years, 10 years, even more – a brain injury survivor is still getting used to herself!  I don’t know when that stops.  I am still fairly new to this when you look at it that way.  Plus, in my case, the years of misdiagnosis “don’t count” because those were years of spiraling downward instead of upwards toward a new life.

Writing a post like the last one about acceptance, can be misleading.  When I say

… I am happy where I am and where I am going.  … It is not that I am entirely free of difficulties due to the brain injury but they are more a part of me now…”

people read that as – “Oh, okay, you are back to leading a normal life.”

No, I am beginning  to create a new-normal for my life.  The brain injury – all the work arounds I have to do to make my life work – is still very much a part of my current reality.   The goof ups, everything taking ten times longer than it used to, the inability to handle a lot of input at once – this is a “new me”; one that I am working to come to grips with.

In that light, it makes some sense that I still feel the need to mention the brain injury when I am sharing about my life.  To not acknowledge it, to feel I should not bring it up; to hide my vulnerability; to feel shame at sharing that part of myself – that is inauthentic.

Brené Brown, a researcher from the University of Houston studies authenticity.  In the videos below she talks about “whole-hearted” people who live life from a deep sense of worthiness and believe they’re worthy of love and belonging.   I will close with a quote from her TEDx Houston talk talking about her research on “whole-hearted” people.

What they had in common was a sense of courage. … the original definition of courage was to tell the story of who you are with your whole heart. And so these folks had, very simply, the courage to be imperfect.

They had the compassion to be kind to themselves first and then to others, because, as it turns out, we can’t practice compassion with other people if we can’t treat ourselves kindly.

And they had connection – as a result of authenticity. They were willing to let go of who they thought they should be in order to be who they were, which you have to absolutely do that for connection.

The other thing that they had in common was this. They fully embraced vulnerability. They believed that what made them vulnerable made them beautiful.

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