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by Ruthann Knechel Johansen
University of California Press, 2002
Review by Yvonne Melia on Jun 15th 2002

Listening in the Silence, Seeing in the Dark

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.