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Rehabilitation of Mind, Motivation, and Identity after Traumatic Brain Injury
by Gerry Brooks, MA, CCC, CBIST
Director of Brain Injury Programs
Northeast Center for Special Care
Mind
and Meaning
From
the time of our arrival in the world, our actions create ever
widening ripples spreading out in all directions like those
from stones cast into a pond, touching people and shaping
events around us. "Ripples" from the actions of
people and events around us touch us, and in turn change us,
sometimes slightly, sometimes dramatically. Throughout our
lifetimes we thus both create and are created by our
experiences.
With our ability to remember and evaluate many of these points
of contact, the continual collisions of action and reaction
between ourselves and others that would otherwise simply
happen and disappear forever, are transformed by reason and
memory into permanent webs of association with other people,
things, and events that connect our past with our present and
our future.
Obsessively mind-full are we, moving about in our virtual
mental reality sometimes at will and sometimes against it, in
day and night dreams, in pleasurable and painful
reminiscences, in dread and delight-filled future
expectations, and in solitary, purposeful reflection over our
experiences, over our aspirations and our options for
achieving them. Back and forth across our ever-expanding and
ever more elaborate web of association, suspended by past and
present associations, and even by associations with an
anticipated future, we traverse the filaments of mind in
search of meaning in our lives.
As these webs develop, we find ourselves less and less fully
present in objective reality, less "in the moment."
By the time we are adults we travel within the subjective,
virtual world of mind incessantly, like butterflies lighting
for mere seconds before mentally flitting to other places and
to other times.
Consciousness and Identity
Understanding and insight are the crowning achievements of
mind, in particular, understanding who we are, our identity.
"Consciousness" is the word we reserve for the
capacity if not the guarantee to know, to understand our lives
and ourselves.
Human consciousness is so much more than an alternative to
sleep. Human consciousness--and as far as we know only human
consciousness-includes self-awareness that can only emerge
in the context of our vast web of association and meaning that
we augment throughout our lifetimes. We reflect upon and gain
insight based on what has gone before, and foresight into how
things might be in the future, based upon present and past
experience.
We develop an image of who "we" are, our
self-concept. We develop ideas, attitudes, and beliefs about
ourselves, about our abilities and limitations, about whether
we are coordinated, likeable, good, intelligent, significant,
and worthy. Ultimately, we develop attitudes and beliefs over
whether our lives as a whole are significant and worthwhile.
Brain Injury
Because the seat of consciousness is the brain, brain
injury often upsets the web of recollection and meaning. As a
result, our previous ability to interpret our lives, to
navigate toward our futures, and to conceptualize our
identity, purpose, and value as a person may be impaired.
Damage to our ability to call forth an experiential context
for our present situation may leave us feeling relatively more
alone and less able to grasp it, and perhaps fearful as a
result. Judgment and insight may become more difficult and
thinking ahead more challenging. In some cases an individual
may be all but "trapped in the moment," living life
impulsively, with little or no appreciation of the
consequences of actions that fuller consciousness once
provided, too often frustrated by a world that seems filled
with nothing but obstacles.
Rehabilitation and Hope
It is in this or some similar state that many individuals
with a brain injury enter into the rehabilitation process.
Doctors and therapists offer help in the form of therapies of
various kinds, to restore function or to compensate for
difficulty with movement, thought, emotion, behavior and
communication.
But before meaningful treatment can begin, a therapeutic
alliance must be forged between patient and doctor (or
therapist) based on agreement about what needs fixing and how
to go about it. Hope is essential for the bond between patient
and doctor/therapist to exist. But the person who has been
injured may have difficulty feeling hopeful and thus in
creating a satisfactory alliance with doctors and therapists.
Hope depends upon belief that meaningful recovery is possible.
It involves being able to recall overcoming obstacles in the
past, that success in the past required persistence and
struggle but that these ultimately produced success. Hope also
depends upon seeing how you are going to get from
"A" to "B." Think of the great feeling you
get when you are lost in an unfamiliar town and you finally
find someone who gives you clear directions and you come away
with a mental map you know you can follow. That is hope!
And hope depends upon being able to hold the vision of an
ultimate goal in mind and to conjure it forth when you most
need it. How would the body builder, aspiring scholar, or
athlete persist throughout all the difficult hours, days, and
years of essential training if they could not conjure up a
vision of rippling muscles, a diploma and new job
possibilities, or gold medals, in order to sustain them as
they confront the last set of bench presses, another
all-nighter for another big test, or getting up before sunrise
for yet another grueling practice session? This conjuring is a
mental act. It is a feat of the mind, a consequence of that
intricate web of association that brain injury disrupts, at
least temporarily, sometimes permanently.
Motivation Disability
Only intact minds can manufacture hope, the basis of
motivation, and only with tremendous and constant
self-reminding about what is to be gained through persistence
and what is to be lost through lack of it, only with a certain
level of self-confidence to start with, and only with a lot of
support from loved ones. A brain injury may make recollection
of past success difficult or impossible to recall, connections
between present effort and future gain difficult or impossible
to conceptualize, especially when these associations are most
needed--when the going gets rough. Self-reminding requires
tremendous mental dynamism that is not typical of an injured
brain and self-confidence may be hard to come by when almost
every daily activity presents so much difficulty. And the fact
is, that many individuals who have had a brain injury lack
support of friends, and family.
It is no wonder that for all of these reasons some individuals
who have suffered brain injury lose motivation or never appear
to have it, and may withdraw from recommended therapies and be
labeled "non compliant." It is a tragic irony when a
person is discharged from treatment for exhibiting a natural
consequence of their injury--tragic, but inevitable in many
cases, considering that cognitive rehabilitation is not a
covered service by most insurance.
Even though the signature disability of brain injury is
cognitive disability--damage to the processes underlying mind,
consciousness, motivation, and our very identity-insurance
companies persist in denying claims for cognitive therapies,
and in limiting benefits for any kind of treatment to a matter
of weeks, for a condition that will require years to overcome.
One excuse for this state of affairs is that cognitive
rehabilitation has no "scientific basis." Had
physical therapy been so limited, it is doubtful any
scientific basis would have developed for it, just as it is
unlikely we would have carts, had God made neither horses nor
oxen to pull them.
The Role of "Alternative" Therapies
Music, art, writing, theatre, dance--these may appear to
be activities a person with brain injury might perhaps aspire
to after rehabilitation rather than essential, first
rehabilitation activities. But observing that brain injury
may impair an individual's ability to participate in
traditional therapies has forced a reconsideration of these
and other activities once considered exclusively
"alternative," as potential primary therapies.
There is an intuitive correctness to the involvement of
artists in brain injury rehabilitation. Brain injury disrupts
connection, meaning, wholeness. An artist is a creator of
connections, of meaning, and of wholeness. The eyes, ears, and
other senses of the artist are uniquely developed so that
artists see connections and meaning where others see none. So
real and so compelling are their perceptions of the world that
they feel compelled to re-create them to help the rest of us
see what is so vividly apparent to them.
Artists will try anything, use any means, to try to re-create
meaning in some concrete form, including brushing colored goo
onto blank canvasses, penciling odd characters onto score
sheets to make specific sounds come from musical instruments,
using word processors and paper, armatures, clay, kilns,
intricately folded pieces of paper, stages, actors, sets,
props, and on and on and on.
An artist entering a medical setting introduces an immediate
and unsettling transformation. Where others see
"patients," catastrophe and loss, artists see
viable, unmistakably whole, fellow artists. Seeing oneself
reflected so certainly in such eyes causes insecurity and
self-doubt to dissipate like mist before a hurricane. Words
like "patient," "disability," and
"therapy" are suddenly out of place. Loss, pain, and
fear are transformed from withering adversaries to formidable
if not entirely welcome allies, from agents of anguish to
subjects of creativity, essential fodder for sublime, witty,
and dark, triumphant, and whimsical works of art.
The artist's unwavering, total regard for each person's
creative power, and their encouragement to fearlessly explore
every and any feeling or idea, inevitably leads to the
re-discovery of other emotions, including confidence, pride,
determination, and yes, hope. And for reasons we do not really
understand, brain injury often unleashes astounding creativity
in individuals who may never have engaged in creative
activities prior to being injured. The recovery of identity,
purpose, and pride vaults forward when activities in the
studio become exhibitions, performances, CDs, movies, and
books for public consumption.
Programs that explore the use of fine and performing arts
quickly discover that they are core, indispensable therapies
rather than therapeutic alternatives. The arts can engage
individuals who may have been unengageable previously, to
develop attention, persistence, cognitive endurance, visual
perception, motor skills, planning, problem solving,
reasoning, and judgment, and, may lead the way, may lead
significant numbers of individuals with brain injury, to
participate for the first time in the more traditional
therapies such as occupational, physical, psychological, and
speech therapies.
It is not whether these and other "alternative
therapies" work, but rather how well, with whom, and
under what conditions. These are answers that must wait,
unfortunately, until governments or citizens become
sufficiently outraged at the intransigence of the insurance
systems they pay for to compel them to at least begin to
provide some reasonable coverage for cognitive therapies.
Other "Alternative" Therapies
The fine and performing arts may succeed where more
traditional therapies may initially fail for a number of
reasons. An art activity may be more immediately satisfying
and fun for some. A person can participate without the stigma
associated with therapies that require more open
acknowledgement of disability, because even though they are
therapeutic, the fine and performing arts are not
"therapies" at all. Someone who fails in a simple
reasoning task provided by a speech-language pathologist is
more likely to be embarrassed (even if no less frustrated)
than someone having difficulty painting a flower vase
presented by an artist.
Other "alternative" therapies may succeed for
similar reasons. Activities such as cooking, cleaning, working
a cash register, dealing cards, calling a bingo game, making
jewelry or greeting cards to sell, waiting on customers,
serving on a planning committee, and others, may offer a high
degree of immediate satisfaction, may feel familiar and
comforting, and, if appropriate support is given so that the
person can succeed at these activities, allow the person to
feel important and "normal." These are activities
that are offered by occupational therapists, recreational
therapists, special educators, and vocational therapists, and
again, activities that are poorly, if at all, reimbursed.
Avocational Rehabilitation
Recovery from brain injury can only be considered complete
when an individual has recovered some life activity, and
associated family or community role, that is personally
meaningful and that brings a sense of pride and purpose. With
sufficient support and encouragement it is possible to promote
the discovery of some activity about which a person feels
excitement, passion, and joy. The culmination of this phase of
the recovery journey places persons with brain injury squarely
onto the same path with many people who are not
brained-injured, a path where we seek to develop our gifts,
and through them, to connect with others.
Brain injury rehabilitation must offer opportunities for
developing such meaningful and central life activities.
Vocational rehabilitation--another grossly under funded area
of rehabilitation--focuses on return to work. But the
workplace may or may not offer these opportunities. The
concept of "avocational rehabilitation" is broader,
it includes any activity an individual feels is important
enough to do as a central life activity, and that typically
brings them into consistent contact with others, whether or
not compensated.
Without such an activity, the core of our lives is empty and
we lack a reason to get up, to go out, and we miss out on many
of the best opportunities to meet others with whom we might
identify and forge close bonds of friendship and thus develop
a network of social support. For the lack of such a core
avocational activity, many individuals who achieve fair to
complete physical independence after brain injury remain
highly vulnerable to social isolation, to depression, and to a
reality-based sense of futility.
One of the challenges to avocational rehabilitation, in
addition to lack of consistent funding, is a lack of
appreciation for the importance of avocation in our society.
We are increasingly a society beset by workaholism that values
less and less life outside of work. Consequently, it has
become easier and easier to devalue those who cannot work and
less and less likely for citizens and for governments within
such societies to see the importance of this aspect of
rehabilitation.
Summary
Our minds are our personal road maps of reality, a map
that continues to develop throughout our lives unless
disrupted by brain injury. In the aftermath of injury to the
brain, our ability to mentally "see" how past
experience should guide present action to lead to desired
future consequences may become impaired. Motivation disability
and loss of identity are common consequences of this cognitive
impairment, which is the signature impairment of brain injury.
Although our system of healthcare frequently fails to address
cognitive impairment, there are many options for helping
individuals become whole. Many of these options begin with
what have been referred to as "alternative"
therapies such as fine and performing arts, recreational and
avocational therapies, therapies that we believe over time
will find their way to the center of rehabilitation programs
for individuals who have experienced brain injury, especially
those treating individuals in the moderate to severe range.
Reimbursement for these types of treatments, and for brain
injury generally, remains a problem. Research is also lacking
that clearly establishes the best way to use these approaches.
However, those who have begun to explore the utility of these
approaches quickly realize that the question for research is how
to use them rather than whether to use them at all.
Comments
by Resident-Neighbor poets and writers at Northeast Center
for Special Care
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