Listening in the
silence, seeing in the dark is Ruthann Knechel
Johansen’s account of her son Erik’s recovery following an acquired brain
injury. The epilogue to the book
reflects Erik’s hope that ‘writing the story of his reconstruction’ might
assist others in similar circumstances to ‘find help and solace’. In affiliating itself with the ‘self help’
genre, I felt the book’s aims were compounded on a number of crucial
levels.

Firstly, Erik was
perhaps uniquely placed in terms of the post-acute rehabilitation he
received. Ordinarily, the range and
type of interventions and the duration of rehabilitation an individual receives
following a brain injury will be limited, at least partly, by financial
considerations, both health service and personal.

Moreover, his family
demonstrated particular resourcefulness in accessing services at each level of
his recovery process and in educating themselves about ways to optimise his
recovery. This is on the one hand
empowering for families of the brain injured in advocating for their child or
relative. However, because of financial
dependence in respect to post-acute rehabilitation, or assessment, families
will often have to defer to health professional’s advice about service
availability and service value in managing a client’s impairments. This dependency is particularly the case,
when many of the problematic sequelae of brain injury that have significance
for community integration, may not manifest for some time post injury, and
access to further rehabilitation or assessment will depend on referrals and
available financing.

Coinciding with
the evolution of Erik’s rehabilitation was his family’s ability to make
significant life changes to accommodate access and proximity to new
services. In this sense the book failed
to adequately portray the particular difficulties brain injury poses for family
integration. Erik’s family were
fortunate in that they could remain close to him throughout the rehabilitation
process, up until he was able to live reasonably independently. Most families are not able to make similar
compromises. An injured person’s access
to post-acute services may mean a move some distance away from the family home,
limiting the time families can spend with their relative around working hours
and other commitments. The emotional
impact of brain injury on this particular family could also have been explored
more. The use of family members’ diary excerpts seemed inadequate here, and the
author’s use of statistics about the impact of brain injury on the family in
the final chapter of the book actually had a depersonalising effect.   

The book did
however deal well with the conflicts that can arise between the family of a
brain injured individual and healthcare professionals. It nicely addressed the frustrations
families may feel with how prognoses are communicated during the acute phase
and with their divorcement from the rehabilitation process in general.

Whilst it is
natural for people to look for explanations outside medicine when loved ones
are critically ill, I did find the author over-relied on spiritual
interpretations of developments in Erik’s condition, for instance, Erik
‘wrestling with whether to stay in life or to depart’ (p. 40) and found this
particularly problematic when attempts were made to marry spiritual themes with
researched theories (e.g. of consciousness).

Taken solely as a biographical account of
someone who has successfully survived a brain injury, reintegrated to the
community and made considerable achievements, including completing a first
degree and postgraduate qualification, the book is an inspiring read. It is also well written, particularly when
describing the physiological sequelae of brain injury and medical interventions
during the acute phase of treatment.

However, one
account of the sequelae following a brain injury cannot hope to depict the
spectrum of possible impairments that follow such a complex neurological
disease. Brain injury inflicts diverse impairments that may include physical
and cognitive impairments, disorders of arousal, and personality and behaviour
change. With Erik, impairments were
largely limited to the physical and cognitive domains, with some evidence of
disinhibition described. This somewhat
reduces the usefulness of the text as a reference point for the subjects of
brain injury and their carers. It
doubtless offers hope, but does so inside a framework for reconstruction which
is close to ideal, in terms of access to services and familial support, and
that many brain injured clients may not be able to relate to from their
experience as subjects of rehabilitation. 
  

© 2002 Yvonne Melia

Yvonne
Melia writes about herself:

I have a longstanding
interest in neurological and neurosurgical disease, particularly head injury,
from a neuropsychological perspective. This led to me completing a Postgraduate
Diploma in Clinical Neuroscience, following a first degree in psychology,
involving myself in voluntary work assisting with support groups for head
injured adults in association with East London Headway house, and most recently
beginning work as a Research Associate for the Brain Injury Rehabilitation
Trust.

Categories: General, Memoirs