This post forms part of a series of posts which seek to identify the potential benefits of developing a social network targeted toward the needs of ABI victims. The other posts in this series may be located via the urls to be added to the bottom of each page.

 

Shared Experience

In the course of writing these past few posts, I have stumbled upon a sudden trove of research literature. I do not wish to count the past hours I have spent searching for organizations committed to cognitive research, and the needs of persons with cognitive deficits. I do know my accumulated search time has been extensive and largely fruitless, apart from finding some US studies.

And then today, I came across a wealth of information on Canadian initiatives, some of which are parallel to my own.

The Everyday Experience of Living With and Managing a Neurological Condition (the LINC study) found:

While there has been some attention to the “illness experience” of persons with a variety of specific neurological conditions, very few studies have examined the commonality of those experiences. For example, shared experiences appear to include disrupted relationships and a reduction in participation in personally meaningful activities (e.g., employment, shared family activities).

My own inability to engage in meaningful work has had a huge impact. Part of the motivation for continuing with the blog is that it serves to mimic a work environment. It provides me with challenges and deadlines. It forces me to confront my deficits and I believe that has delivered benefits.

I have also engaged in unpaid work. And I have been very glad of the opportunity. But I have experienced problems due to the fact that my injury has disrupted my immediate past work knowledge. I once had excellent command of multiple aspects of IT, and the necessary confidence to assist others with complex installations (my role included providing support to our own field engineers, personnel with years of knowledge and experience. When they were stumped by a problem, they called me). I had no problem with continual learning – I greatly enjoyed the challenge. I built my own computers, and engaged in programming as recreation. All of that prior confidence has evaporated and I now struggle to redevelop the skills that were once so normal, immediate, and facile.

At present I feel as if I have been relegated to a shadow economy, a series of unpaid positions in which I seek to conceal any aspect of my injury. I do my best to imitate normalcy while my economic position continues its decline. If I cannot find a means to develop an income, I will end up living under a bridge. I do not want to be dismissive of the unpaid opportunities. I am very thankful for them. But they do not pay the bills.

There needs to be some means of assisting the larger society to arrive at a better understanding of the problems faced by persons with brain injury.

My fear in writing this blog is that by allowing it to be public, I will stigmatize myself and undermine any future employment opportunity. But someone has to go first in speaking out on these issues. And since this is post 199 of a long series, it may as well be me.
 

—————————————

This post is part of a series which seeks to describe the functions of the Daffodil Network. Other posts in this series are the following:

Daffodil Network – Introduction
Daffodil Network – Research Need
Daffodil Network – The Internet of Things
Daffodil Network – Shared Experience
Daffodil Network – Support Group Meeting