Learning about brain injury can happen in many ways: from people living with brain injury, from their family, friends and support network.
From courses, reading, watching, listening to stuff about brain injury (sometimes enlightening – sometimes sleep provoking).
From reading Changed Lives New Journeys – your favourite of course!
One method of learning I enjoy is to challenge myself to see how things not written about brain injury can help understanding. Confused – have a look at this example I wrote a while ago using Winnie the Pooh to promote learning about brain injury. Today it is the writing of Douglas Adams.
Why Douglas Adams?
As we talked I recalled a well thumbed book that helped me travel Europe many years ago “Hitchhikers Guide to Europe” by Ken Walsh. It taught my travelling companion and I much about traveling and hitchhiking.
I began to wonder if maybe the “Hitchhikers Guide to the Galaxy” , or more specifically Douglas Adams, could help me travel around brain injury.
Beginning with a selection of quotes from Douglas Adams I had already collected, here is where it took me in my understanding and learning about brain injury:
“We are now cruising at a level of two to the power of twenty-five thousand to one against and falling, and we will be restoring normality just as soon as we are sure what is normal anyway.” The Hitchhiker’s Guide to the Galaxy
Each of us has a different definition of “Normal”, and our own “Normal” can change as our circumstances change.
Normal is different before and after brain injury.
Normal is different before and after you begin to understand brain injury
Normal can be different depending on your culture, background, beliefs, family values.
Forget trying to work out NORMAL we don’t really know what normal is. Begin with what you see and hear in front of you.
There Is No Normal!
“… She had heard it said that humans are supposed only to use about a tenth of their brains, and that no one was really clear what the other nine tenths were for, but she had certainly never heard it suggested that they were used for storing penguins.” The Long Dark Tea-Time of the Soul
Oh I so wish that the mysterious 90% of our brain we don’t use was used for storing penguins!
Sadly as Douglas Adams humorously hints here – we do not have a large storage part of our brain we are not using. It is one of the Brain Myths that keeps on spreading.
“… the theories that Ford had come up with, on his first encounter with human beings, … His first theory was that if human beings didn’t keep exercising their lips, their mouths probably shriveled up.
After a few months of observation he had come up with a second theory, which was this–“If human beings don’t keep exercising their lips, their brains start working.” The Restaurant at the End of the Universe.
A blunt reminder of the advantages of speaking less and listening more. And listening – well maybe, just maybe, it will help our “brains start working”.
Someone said to me recently “But if I don’t tell them what I know, how will they learn?” Having the knowledge while listening and supporting others to learn – rather than giving advice – can be far more effective.
We know our mouths won’t shrivel up if we don’t exercise our lips. We do don’t we. So silence is not a bad thing. It is a space where thinking and change can happen.
“You cannot see what I see because you see what you see. You cannot know what I know because you know what you know. What I see and what I know cannot be added to what you see and what you know because they are not of the same kind. Neither can it replace what you see and what you know, because that would be to replace you yourself.”
Trying to figure out what this is really saying can turn your mind and eyes inside out. Clever.
For me it says: we cannot know all that another person is. Or all that another person is living with. We all view the world from our own experience.
Ideally we need to be able to listen to other’s experiences, to hear how it is for them – and not always relate it to our own experience.
Putting ourselves in the shoes of the other person rather than assuming we know.
“… We assume that every time we do anything we know what the consequences will be, i.e., more or less what we intend them to be. This is not only not always correct. It is wildly, crazily, stupidly, cross-eyed-blithering-insectly wrong!” The Ultimate Hitchhiker’s Guide: Five Complete Novels and One Story
Who wants to be “wildly, crazily, stupidly, cross-eyed-blithering-insectly wrong. “ A strong reminder that assumptions can be misleading, and plain wrong.
When a person has brain injury. We do not know exactly what that person’s outcomes will be – now or into the future. Assumptions and predictions can be distressing for those involved and just plain wrong. I remember a young girl who appeared to have no movement, no communication and one day 15 years (13 years after the supposed “plateau” of recovery) after acquiring her brain injury she began to respond to her Mum. Eventually was able to live in a shared house, use an electric wheelchair and talk with a communication aid.
How many times have you heard things like “I was told I would never walk again and look at me now.” Or my favourite!! “They told me he/she would be a vegetable for the rest of their life”. We cannot predict and we should not give up.
Work hard with what is – don’t rely on predictions and assumptions about what will happen.
“It is folly to say you know what is happening to other people. Only they know, if they exist. They have their own Universes of their own eyes and ears.” The Restaurant at the End of the Universe
Anyone who has experienced the “I know EXACTLY how you feel” will likely relate to this quote. We cannot EXACTLY know another’s experience.
Far better to ask about their own “Universes”
Any words that lead to the meaning “I know your experience exactly” should be left out of conversation. As listed in 9 Things Brain Injury supporters should not say to a person with Brain Injury we never “EXACTLY know” what another person’s experience is. Better to listen and learn about what the other person’s experience is for them.
Guessing what someone is about to say, filling in sentences, or jumping in before a person has finished a sentence are all actions that limit listening and discourage the other person talking.
“The bird that would soar above the plain of tradition and prejudice must have strong wings” The Hitchhiker’s Guide to the Galaxy
“Soar above” your own judgement, assumptions and prejudice and support others to do the same. It can be confronting and painful at times to examine our prejudice (large and small), yet so valuable for ourselves and those we are with.
Prejudice comes in many forms. The outcomes of brain injury can create prejudice and judgement “the way they walk and act they must be drunk”, “ you can’t talk or remember things I need to talk to you like a child so you can understand”.
“A learning experience is one of those things that says, ‘You know that thing you just did? Don’t do that.” The Salmon of Doubt
I think this so perfectly describes the learning curve of brain injury for people living with brain injury, for family, friends and supporters. You often learn through mistakes and Oops.
As a supporter I remember many times I have learned the hard way by doing something and finding out Oops – should not have done that. I vividly remember as a young nurse sternly telling a young man with a floor covered in newspaper “Clean up this room it’s a mess”. He calmly responded “I would but I am paralysed.” Ouch
Yet these are often times you learn for future. You learn “Don’t do that” try this instead.
I leave the last word to Douglas Adams:
“Human beings, who are almost unique in having the ability to learn from the experience of others, are also remarkable for their apparent disinclination to do so. ” Last Chance to See
I am curious to hear from any Douglas Adams fans about learnings you have gained from his wit and writing?
Or is there someone or something (writer, character, film) you would like to see me learn from?
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