principles of brain injury

It strikes me that there can never be enough principles to guide us.  However, I have never found anything that satisfied what I understand about brain injury.  I have put together two sets of principles here.  The first is from the perspective of the person with brain injury, the second is from a rehabilitation professional’s perspective.  This is just a beginning.  Have you anything to add?

Principles of living with brain injury from the perspective of someone with a brain injury

  1. You will be alienated.  Don’t let anyone lay memory principles on you…..those memory conclusions just contribute to the alienation. 
  2. You will have to receive energy from others for the rest of your life.  You need to set up a situation where people are going to be responsive to you.  You make them morally obliged to you.  .  You do this by taking responsibility for giving out energy, which you will then get back. 
  3. You have no future with brain injury. 
  4. You will never belong.  You are on your own.  You need to learn to handle isolation.  You never receive the reassurance of being a member because that is a memory thing.  You cannot think of two things at once, of belonging and being here. 
  5. Go with the flow – because if you don’t go with the flow you get mood swings and all the classic things that go with it.  It is about accepting that you are buggered then you learn how to handle the new brain states.  At first you are angry, frustrated and in a state.  It is only when you have learned to live with a new brain state….you come to terms with. 

(from a conversation with William Fairbank)

Principles of brain injury from a rehabilitation perspective

1.The clinican must begin with patient’s subjective or phenomenological experience to reduce their frustrations and confusion in order to engage them in the rehabilitation process.

2. The Patient’s symptom picture is a mixture of premorbid cognitive and personality characteristics as well as neuropsychological changes directly associated with brain pathology. 

3.Rehabilitation focuses on both remedation and the social situation.

 4.Rehabilitation helps patients’ observe their behaviour and thereby teaches them about the direct and indirect effects of brain injury.  This may help patients avoid destructive choices and better manage their catastrophic reactions. 

5.Failure to study the intimate interaction of cognition and personality leads to an inadequate understanding of the issues

6.Little is known about how to retrain a brain dysfunctional patient cognitively, because the nature of higher cerebral functions is not fully understood.  General guidelines for cognitive remediation, however, can be specified

7.Psychotherapeutic interventions are often an important part of rehabilitation because they help patient and families deal with their personal losses. 

8. Working with brain dysfunctional patients produces affect reactions in both the patient’s family and the rehabilitation staff.  Appropriate management of these reactions facilitates the rehabilitation and adaptive process.

9.Each rehabilitation program is a dynamic entity.  It is either in a state of development or decline.  Ongoing scientific investigation helps the team learn from their successes and failures and is needed to maintain a dynamic, creative rehabilitation effort.

 10.Failure to identity which patients can and cannot be helped by different rehabilitation approaches creates a lack of credibility of the field.

11.  Disturbances in self-awareness after brain injury is often poorly understood and mis- managed.

12.   Competent patient management and planning innovative rehab programs depend on understanding mechanisms of recovery and deterioration of direct and indirect symptoms after brain injury.

 13.  The rehab of patients with higher cerebral deficits requires both scientific and phenomenological approaches.  Both are necessary to maximise recovery and adaptation to the effects of brain injury. 

 Adapted from, Prigatano, G. P. (1999). Principles of neuropsychological rehabilitation. New York, Oxford University Press.

Message to the parents of the newly brain injured person.

There are times when infants are born when things have not turned out as a parent might have planned. Despite our best efforts, careful prenatal environments making use of the best available information, there are infants who come into the world with handicaps and disabilities that cannot be corrected. When handicapped children are born in hospitals, the best ones immediately provide counsellors to talk with parents about the educational possibilities that will be open to them, and give them hope regarding their children’s futures, provided they attend closely to them. Child psychologists have found that this makes a major difference in the bonding that takes place in the family, and ultimately in maximizing the child’s, and the family’s, potential.

So I wonder why we can’t make it a practice to provide counsellors to talk to families of people who have had to re-start life with a brain injury. This moment of catastrophic change brings with it the need for a new bonding. Parents need to know about the possibilities that are available to them, what they can hope for. Of course it is impossible to give an exact prognosis for this person, but there are some words that we could say that might give guidance and comfort. Can we begin to imagine what we would like to say if we were place in that position? Wouldn’t it be great to have a book filled with multiple scripts for the occasion? You could imagine saying some of these things…..

“Congratulations that Christian is still alive. I know you are exhausted after all you have been through in intensive care and rehabilitation! And, let me tell, so is he. It is the end of a long journey for both of you, and the beginning of another, one that I hope will bring both of you nothing but joy!”

“Christian has been damaged in this injury, but he is otherwise perfectly healthy. We can hope that he will have a long, happy, and fulfilling lifetime. You always need to remember this – Christian is absolutely unique, as he always was. There is not another person who has ever existed on this planet, short of cloning, who has the same biological makeup that he does, or ever will. Even if a clone of Christian had a similar brain injury the effects would be different, because that clone would be exposed to environmental influences – including you and the life you make for him – which are absolutely unique, and which awaken some of the latent possibilities built into whom he is, and will leave others sleeping.”

“Now there is something else I need to tell you. It is statistically unlikely that Christian will achieve all that he might if he had not had the brain injury. He is unlikely to win the Nobel Prize, invent the final cure for cancer, attend Harvard, compete in the Olympics, conduct the New York Philharmonic, or become President of the United States. All of these are always possible, of course. I’ve seen brain injured people go out and do amazing things. But even if you have had dreams and aspirations for Christian’s future, learn to pay attention to him in the here and now, attending to his particular gifts and aspirations.”

Every parent of someone with brain injury has fears for the future, fears of what they might miss in providing for their son or daughter, fears that they would be inadequate as a parent of this adult person. It takes awhile to feel that you really have everything under control, or at least enough control that you could relax, so that you can grow together. ”

“But, now let me also tell you that fantasies, and ideas, and anxieties are a big part of what love is all about. If you lack these, and I’m sure you don’t, you would be lacking in those very qualities that make you human, and which Christian needs now more than ever as he re-learns what it means to be human, including how to love.”

“Let me tell you also that there are some things you will not understand about your child…and never will. Christian is his own soul, and with any luck will outlive you, and visit places in space and time that you in this worldly sphere are simply prohibited from going. Indeed, this is one of the great secrets and paradoxes of parenting the person with brain injury – you are preparing your child for a future you yourself will never know. Having to re-invent life after a brain injury makes the future all the more unknown, but it is still his destiny.”

“Now having said that, relax. It really isn’t as hard as you think. Treat him as if, out of all the possibilities, he chose this particular path to learn what he needs in this life. Treat him as if, out of all the possible parents in the world, Christian chose you! Literally. There are, in fact, philosophers going as far back as Plato who have believed that children choose their parents. You’re it. Take it as an honor, and a responsibility, not that you are a parent (lots of folks can make that claim) but that you were specifically chosen to be the parent of Christian, at this particular and special moment in time. If you learn to listen and to watch and just to be present long enough, time will reveal you to why this was meant to be. It is the same now as it was at the beginning of his life.”

“And let me assure you, Christian wouldn’t have chosen you if you weren’t up to the task. His very uniqueness, the uniqueness that makes him Christian – call it the song of Christian – is calling to you, and you will know, know deeply, how to respond to it. Yes, you will learn plenty of techniques, tricks of parenting the person with brain injury trade, maybe even a little bit about education, as you go along. You’ll find a great library of books out there about brain injury; you will meet people with brain injury who inspire you, either through life or through books and films that tell of what can be achieved; you will find a walking library of other parents who have gone through the same thing and who will freely share their experiences and wisdom with you – sometimes, perhaps, more freely than you’d ever really desire. All that is well and good, but you only need take on board what will help both you and Christian to grow. . Ultimately, all this is really about is paying good attention. Your ability to be the right parent for Christian at this time is built into you just as securely as being Christian is still built into himself.”

“And just one more thing. Don’t neglect who you are just because he has had a brain injury. You are born with that same energy and potential as he is, and his brain injury is an invitation to you to maximize it. There is nothing you can do that is more important to Christian than your becoming, fully, the person the Great Creator meant you to be. You will find, if you look, parents and families who negotiate this transition to become stronger than they could have ever dreamed.”

“In Yiddish at any milestone or acknowledgment of an accomplishment or rite of passage, one says “Mazel Tov”. Having Christian alive with you today is an accomplishment and a new beginning. The tov in Mazel Tov simply means “good”. The word mazel derives from the Hebrew for the Zodiac mazalot, and is associated with an infusion of cosmic energy yet to be delivered. The Talmud cites three life issues directly affected by the mazalot – life, children, and livelihood. Wishing someone “Mazel Tov” is an expression of hope that the energy of the universe should only be for our, and the world’s, good.

Freely adapted from : Albert, D. H. (2004). nature/nurture debate.