Category Archives: Rehab

Recovery Narrative

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TBI Recovery Narrative

Table Adapted from Nochi, 2000

Weeks of Post-Injury Main Neurological and
Sex Age Cause Coma In Years Neuropsychological Deficits
1 Male 32 Fall unknown 12 STM, speech, ambulation
2 Male 50 MVA unknown 10 STM, attention, emotion
3 Male 49 MVA 8 3 STM, attention, emotion
4 Male 30 MVA 4 11 STM, LTM, emotion
5 Male 27 MVA 4 7 STM, speech, coordination
6 Female 24 MVA 2 4 STM, learning
7 Female 54 MVA 0 28 STM, attention
8 Male 28 MVA 16 6 STM, seizure disorder
9 Male 45 Sports 0 9 STM, emotion
10 Male 40 MVA 0 5 STM, emotion
Average 37.9 9.5
Median 36 8
High 54 28
Low 24 3
100% have changes in STM
50% changes in emotion
30% experienced no coma
40% unemployed

 

This is the table that gave me so much trouble. It formed the primary trigger for the last depressive episode.

The table is based on one contained in an article describing the application of newly constructed self narrative as a means of adapting to TBI injury. These recovery narratives take different forms but each variation assists the victim in undertaking a positive response to his / her injured state.

My negative response to the recovery narrative article was not due to the narratives but was a reaction to the data contained in the table excerpted above. This table created a number of cognitive shocks. These shocks are described in the following sections.

Recovery Narrative – Shock of Injury Duration

The first shock was due to the fact the sample population has spent an average of 9.5 years in recovery. The longest recovery duration is 28 years. Given my present age, and this extended recovery period, I am forced to acknowledge I will likely deal with this injury for the rest of my life. This has been extremely difficult to accept.

Recovery Narrative – Shock of Similarity

The second shock came with the recognition of the similarity between my injuries and those of the sample population. The first lawyer to handle my file spoke with the insurer, and then relayed the insurer’s opinion that my injury was “unique,” that it was unlike anything they had previously encountered. Based on this opinion, the lawyer advised it was unlikely the insurer would accept my claim.

Yet, when I examine this table, I find that 100% of the sample experience short term memory (STM) issues. This is one of my major deficits.

Fully 50% of the sample experience problems with emotion. Again, this is one of my major deficits. Since the date of injury I have experienced a very flat emotional range  — so flat that an incidence of spontaneous laughter provoked a blog post. I encounter none of the emotional responses previously experienced either in relation to individuals, or objects, or processes. When I undertake a test for Autism Spectrum Disorder (ASD) the test indicates that I now exhibit the clinical signs of this illness. If I answer the same test battery based on how I would have responded prior to the injury then there is no evidence of ASD.

My period of unconsciousness is not known. My best estimate is a duration of between 30 seconds and one minute. The problem is that the duration of coma is not a reliable indicator of the injury impact. In the sample population described by the table, the male who experienced 8 weeks of coma has returned to work while the other individuals, with much shorter periods of coma, or no reported coma, remain engaged in recovery.

Recovery Narrative – Shock of Severity

Another key data point was the age of the individuals at the time of injury. If you subtract the recovery period in years from the current age of each of the victims, you find that the average age at time of injury was 28.4 years with a median age of 24 years. Age is a recognized factor in the severity of brain injury. I was 5 months shy of my 60th birthday at the time of the accident. This is more than twice the median age of the sample population. Given this fact, I am thankful my injuries were not more severe.

Recovery Narrative – Shock of Loss of Self

The key insight derived from this article, and the associated table, is the realization that my prior life strategy  (a compensation strategy, or learned behaviour )  does not address, and cannot resolve, the TBI deficits. The strategy may have worked to avoid bullies, and in helping to fit in with a group, but it does not facilitate recovery from TBI.  Insight into my injury, or my psyche, is of little practical benefit in dealing with the deficits.

I need to develop a new strategy, and adopt a new self image. Together these function as a coping mechanism helping me adapt to the injury. This calls for a “new” me. It also demands I place less emphasis on the strategies deployed by the “old” me. This realization has been very difficult to accept. I have no idea how to go about doing this and the thought of abandoning 60 years of accumulated life experience is extremely daunting.

Update 21/06/14 17:12:59

I revisited this table prior to seeing Dr D and realized that it contains another critical data point. Subtracting the post injury recovery period from the age in years gives the age at time of injury. The median age at date of accident for the table sample is 24 years. My age at date of accident was 59 years.

Age is a known factor in the severity of brain injury. I was over twice the age of the other individuals in this study.

 

 

 

 

Medication

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My doctors have suggested that I go on medication. This suggestion was made previously but I refused. At the time, I was experiencing a strong impulse to self-destruction. I did not truly trust myself, or my ability to make decisions, and was concerned that any medication might further impair, or cloud, my mind. These events took place in the late spring of 2013.

In the spring of 2014, the situation is different. I still encounter mood swings. I still find myself entering depressive episodes. I still find myself wanting to retreat from the world. I still have thoughts of self destruction. I still ponder the question: is the new me the way I want to live out my life? According to actuarial tables, I have fourteen years worth of sunrises and sunsets ahead of me. Does my present quality of life make those days welcome?

In trying to answer this question, I have come to the following conclusions. These are not hard and fast, objective outcomes.  They are not final decisions. They are essays, attempts to gather my thoughts, to think things through on paper, and to see what is arrived at.

Medication – Change in Thought Style

I am not sure one can alter their thought style in the same way one alters one’s clothing fashions. I may be remiss in attempting to introduce a form of medical haute couture. But my sense is that my present day thought style is different from that of a year ago.

I am not sure what words to employ to characterize this difference. First, the difference is experiential in nature. It is my “sense of difference” rather than an objective measure. If one has experienced love then one understands immediately the failure of language to fully capture, or convey, the experience. I face a similar problem.

In 2013, I felt more overwhelmed by my thoughts, More driven by them. Perhaps more reckless and out of control. There was no fear but there was a sense of being out of touch, uncertain, confused. There was considerable experience of mistrust – mistrust of my own experience, mistrust of my perceptions, mistrust of my ability to engage in the common casual ordering of body and mind in the effortless way the uninjured so easily take for granted.

In 2014, I am less overwhelmed. There are still strong patterns of thoughts but I appear better able to surf these thought waves, to ride through the turbulence, to keep my head above water. There is less sense of being submerged, out of touch, the grasping for reality that was present in 2013.

I have more confidence in my ability to think things through. If it were possible to reduce everything in my life to a set of logical syllogisms then I would be able to operate quite happily, an imitation of Lieutenant Commander Data from Star Trek (I may mean Spock. I have no idea. I have enough trouble keeping track of my own life to worry about confusion between these characters).

Much of this confidence stems from the blog. I use the blog as external memory, as a form of “thought processor.” It forces me into an attempt to commit my thoughts, to fix them to the page, to make them discursive. I believe I am more successful in this than I was earlier and that the blog has been of significant benefit.

Medication – Self Destruction

In 2013 I experienced a strong wish to go to sleep and never wake up. This impulse was expressed in other forms. I feared medication would alter me in unknown ways, might leave me less able to avoid a destructive impulse. The medication itself might provide a means to the end.

Today, I continue to have down periods. I am not sure if these are less, or more, powerful than previously. There is a sense that these questions, questions Camus described as being central to the human experience, are by now routine, like a pair of worn shoes, well accustomed to the shape of my feet. There appears to be a quality of greater objectivity, more distance, less immediacy, less impulse. I seem better able to accommodate my deficits despite the fact that recognition of them remains a strong trigger for depressive episodes.

Medication – Self Perception

I remain concerned that through the use of mediation I might become less, rather than more, self-perceptive. I believe my ability to exercise logic, to analyze, and to write about my experience, has significant therapeutic value. Would medication impair these capacities?

If they were to be impaired, would I retain the capacity to notice?

This last item calls up memories of a stage in my accident recovery prior to the commencement of blogging. I would find myself sitting motionless, staring out into space, devoid of all thoughts and motivation. Acknowledging this vacant state as unhealthy was a key motive driving me to accept the difficulty of blogging. I am concerned medication may place me back in the twilight zone.