The following four examples are drawn from my own experience. They are being provided for illustrative purposes only; it is not known to what degree the findings may be generalized to all TBI victims.
Example 1 — Chunking the News
I was once a book worm, a person who found few greater joys than full absorption in a text. It didn’t matter if the text was a work of imaginative fiction, or a detailed exposition of a topic in history, science, or technology. Subsequent to the injury, I was unable to read more than a few paragraphs before experiencing headaches and a loss of concentration such that I could not remember what I had just read. No matter how I exerted myself, the outcome was the same. Even when I turned to old favourites, books that I loved, and which I had read multiple times, I encountered the same problem.
The Internet is my primary source of news. Since I was unable to read beyond the headline and the first paragraph, I would leave stories open on a browser tab for the moment when I would “have more time” or feel mentally refreshed and better able to complete the reading. This practice of “story saving” resulted in frequent browser crashes. This was discovered when I wrote an email to one of my doctors; pasting text into the browser email window resulted in a browser crash. Troubleshooting the problem revealed that the browser, and the accumulated open tabs, consumed in excess of 5 GB of machine memory. As I added more tabs and further increased the memory demand, I caused the browser to suffer an internal overflow error and crash.
Unable to read the news, I turned instead to reading the comments. The main story might contain a dozen or more paragraphs. The comments section consisted of pithy, one or two sentence items. Despite this brevity, the comments conveyed the thrust of the original news item, provided a piercing critique, and offered multiple unique perspectives on the original topic. The contributions of the reader community afforded me a well rounded perspective, an overview superior to the limited perspective delivered up by the original author of the news item .
Interspersed with the short comments were longer items composed of two or three paragraphs. I started by reading the shorter items and, after a period of time, I was able to advance to reading the longer comment items. After that, I found I was able to comprehend the first few paragraphs of the main story. Still later, I found myself able to read through the entire main story.
The value of this example is that it illustrates the value of chunking, and the provision of a graduated exposure to cognitive tasks, as a means of improving cognitive abilities. We understand that our physical bodies require stress in the form of exercise in order to develop and maintain a certain level of fitness and performance. It is known that the mind is plastic, that it develops in respond to cognitive demands, and that uninjured portions of the brain may assume duties once performed by injured portions.
The proposed organization seeks to provide TBI victims with a rehabilitation context that presents task sets similar to those found in occupational settings. This setting mimics a conventional workforce setting but omits the time constraints and immediate productivity demands found within the contemporary workplace. To the degree possible, it is intended to be operated and managed by persons with lived experience of TBI. Through participation in the proposed faciilty, the TBI victim may engage in a variety of occupational roles and identify strengths and weaknesses, personal preferences, and learning objectives. The individual not only recovers their prior cognitive abilities, they are also afforded the opportunity to acquire a set of skills which will assist them with later workforce reintegration.
Example 2 — Programmatic Learning
I have been engaged in web programming since the days of the neon Internet and HTML 1.0. Compared to a language such as x86 Assembly, HTML is fun to work with, easy to program, and delivers instant feedback when an error is made. Since 2006 I have operated a number of development web sites.
One of my Doctors recommended I continue to engage in web programming as a form of rehabilitation therapy. A dormant test site was converted for use as a private blog, a means to record details of my recovery while at the same time re-acquiring past skills.
This blog (which may be found here: Facticity.ca ) has been of considerable benefit. It has helped me obtain greater awareness of my injury, and the obstacles it presents, provided me a means to record improvement, permitted identification of deficits, or areas requiring focus, and has assisted me in the re-acquisition of skills. I have no prior experience in creative writing but there have been times when I have written text which surprised me with its quality (I should note that much of the work was difficult and arduous. I sometimes took three or four days to make a single post. And the software co-operated by allowing me to go back and enter revisions; some posts have in excess of 40 revisions. )
The software employed is open source and may be easily configured for a variety of applications. Once the site structure has been completed, it is a relatively simple matter to add content. This creates the possibility of a graduated exposure to technical detail. The initial stage would involve the individual in gathering content, an intermediate stage would involve editing that content and making basic modifications to site presentation, while an advanced stage would involve mastering the underlying code base. Experience at any of these levels would result in marketable skills. The recovered victim may elect to operate their own business venture and they would be able to do so from a home office location.
What about people who have an interest in fields other than technology? At the present time technology is found in all fields and it is likely to remain a disruptive element that results in continued change in all occupations. In the case of an on-line store used to market craft goods there would be opportunities for craft makers, for logistics and management staff, for IT support, and for people who pack and ship the completed orders. All this activity occurs within the context of a “Slow Enterprise” in which the majority of the staff have lived experience of TBI, or similar disabilty.
Example 3 — WYSIWYG
This web site is itself an example of the outcome of extended polishing and rework. It demonstrates that it is possible to deliver a cultural product which does not betray the difficulty associated with its creation. What You See Is What You Get ( WYSIWYG) and it requires huge amounts of hope and hard work. This back story is not evident to the casual reader.
Example 4 — The Brush-Off
I have a former work colleague with whom I have been in email contact. I recently took the initiative and provided notification of my injury. After working on this blog I felt more positive about revealing what had taken place; I felt confident enough to “come out of the closet” and disclose the fact of a brain injury.
This morning I had a response and it reads as what I have come to understand as the “brush-off” communication. Sitting here, and puzzling over how to manage this situation, I realize I may have been stupid and naive. What would be very helpful in this situation is access to a peer group with lived experience of the injury. I might learn from their experience about what worked well, and what actions may be less helpful, and / or inappropriate when dealing with reactions based on social stigmatization and an inaccurate understanding of brain injury. This need for “solution sharing” extends to all aspects of life; work relationships, interpersonal relationships, how to respond when you experience a sudden rush of irritability toward a store clerk, or the urgent need to flee a location due to an overly loud sound system. Each of these issues involves a learned behaviour, tacit knowledge that the individual acquires through a lifetime of social interaction. The TBI victim must learn life anew, from a perspective which has vastly changed. Access to a shared resource of peer based knowledge would be of tremendous help in accommodating the injury and successfully re-integrating with society.
The same peer to peer network would also help salve the emotional hurt that accompanies the rebuff. It may seem minor to you but it is a significant event to persons learning to cope with their injury. We are all social creatures and recent scientific findings indicate we experience social rejection as acute physical pain. Such social rejection destroys hope and greatly undermines the motivation required for the hard work of recovery.
