Overcoming stigma and acceptance of self: A life-long journey in recovery from and acceptance of the sequalae of a severe brain injury

2.1 Time in hospital

The time spent as an in-patient and out-patient was in general a positive time for me. I did not particularly like occupational therapy, as energy was spent on tasks to help me function in daily life, such as getting dressed, fine finger movements, cognitive tasks and more practical activities such as looking up numbers in a phone book or getting into and out of a bathtub. According to Bogart [1] disability efficacy is the belief that one can manage the tasks of one’s disability in order to achieve valued goals. As the only important goal for me was to walk again, physiotherapy was the only intervention that was seen as positive or productive for me.

Another reason occupational therapy was viewed negatively was that my therapist at the time encouraged me to be more independent by taking the local means of transportation for those who are “disabled”. When I strongly objected to taking this mode of transportation as it would then label me, she looked at me and said “but you are disabled”. This was my first encounter with stigma toward my own situation, and what I believe in hindsight, has been a major driver in wanting to distance myself from the disability identity, which is defined by Bogart [1] as solidarity and affinity with others with disabilities and finding value and meaning and benefits from the disability experience.

Bogart [1] goes on to highlight that a large part of our self-concept is based on our social group identity and that Social Identity Theory [4] suggests that people strive for a positive self-concept. People of stigmatized groups employ two ways to manage stigma and improve self concept; they minimize their disability, try to assimilate and deny their disability identity. For those who are unable to pass or leave the group, the other way to manage stigma is to align with the minority group and thus foster their disability identity. Thanks in a large part to my friends, who did not leave me and kept in contact with me, I always felt socially accepted, but as a result, I never accepted my disability identity and constantly strove to distance myself from the social construct of being disabled.

2.2 High school

Prior to my accident, I had been an A student, with marks in the 90’s and taking honours courses. I was very good at math and physics and my goal was to enter Engineering at University. After my year in therapy, I was no longer recovering in the relative safety of the hospital. I was instead required to navigate my new found disability on my own, similar to the theme by Chamberlain [3] of being stranded.

I did not remember the accident, and therefore had a very difficult time shaking off the “dream like quality” that my life had taken on after the injury. I did not really believe that the accident had happened to Cisela, and that she was living her life whereas I was dreaming. This is referred to as grief work by Chamberlain [3] and that involves an accommodation where one’s pre-existing knowledge, emotions and experiences are adapted to the new reality. An example of this was when I asked about my grandmother and was told that she had passed away. This gave me useful information about the reality where I was currently living much like someone, when dreaming, intuitively know the facts behind the dream and I was trying to test my new reality. Again, this was highlighted by Chamberlain [3], that recovery can only progress when one can test reality.

Upon entering Grade 12 for the second time in 1984, with a new cohort of students who had not been my friends before the accident, and had thus not known the very good student I had been, I felt I had to justify why my marks that previously had been in the 90’s without any effort were now in the low 70’s with significant work and effort on my part. I was simply told by my fellow students “you were in an accident, get over it”. Could they not see that this student who was struggling to just scrape by was not the real me? I longed to go back to the hospital that was a “safe place” and where my efforts were recognized and I felt validated.

The combined effect of not remembering the accident, the disconnect between my life before and my life after that was created by my period in a coma, and my preconceived notions of what a disabled person was, I had a very difficult time accepting my new reality and did everything in my power to fight the very disability identity that Bogart [1] indicates should help people with disabilities to improve their satisfaction with life. Nevertheless, I managed to graduate from High School, albeit with much lower grades than was my norm, and managed to be accepted to University. Not to my first choice, which would have been Physics and Engineering, but to Biology. I had a very difficult time abstracting and understanding logic. Biology was a compromise for me, and would only require me to memorize facts, something that I hoped I would be able to manage through hard work.

2.3 Biology degree

When I finally entered University, it was a huge relief for me, as I no longer had to justify my existence in terms of education. I had now joined my cohort and would be able to be just like everyone else. I had escaped the disability identity and was normal. However, due to my cognitive difficulties, especially in memory and abstraction, logic and problem solving, I struggled with any courses that did not involve straight memorization. To be able to manage these courses, I developed strategies to augment my memory, studied diligently every night to commit biological facts to long term memory and learning. I never crammed for any exams, not relying on any short-term memory, going so far as relaxing every night before an exam the following day.

At the time that I went to school, there was not, to my knowledge, any disability assistance or specialized programs, nor were there any tools that I could avail myself of to help me navigate my courses. On the other hand, given that I was so driven to not be seen as disabled, I may not have made use of these tools either. While my own stigma prevented me from seeking help, it may also have spurred me on to improve. This mind set is mirrored in the findings of Bogart, Rosa and Slepian [2] who describe essentialism as the belief that members of categories are thought to have essences that put them in a category naturally and that they will be in that category permanently. For instance, persons with congenital disabilities are better adapted to their situations and have a better developed disability identity than those with acquired disabilities. The thought is then that to help those with acquired injuries adapt to their situations, they suggest that work should be done to essentialize acquired disabilities. I fought that idea with all my being.

I managed to graduate with a Biology degree, and while a big achievement for someone who was initially not given more than a 20% chance to survive, it was not where I had envisioned my life to be before being hit by the car. It was a time where I was trying to come to terms accepting my limitations, and any future career that this may lead to.

2.4 Occupational therapy degree

After graduating from biology, I took a year off to have a break and to take some time to determine my next steps. This was not at all what I had envisioned my future to be; struggling to get average marks in biology. I was supposed to be a budding physicist or engineer with a bright future.

Given my experience in the hospital and rehab centre, I turned my sights to the rehabilitation sciences. I did not have the confidence that I could apply to medical school, something I knew I would have had the smarts to manage before the accident. I applied to physiotherapy, but did not get in, so I tried occupational therapy. Unbelievably I was accepted, although in hindsight, I don’t believe it was because of my marks so much as my own experience as a patient. Thus, even though it was incredible that I had been accepted, it was still a choice that was made because of my limitations. I had still not escaped the effects that the injury had caused in my brain.

While I enjoyed my time in the occupational therapy program, I always felt a little more affinity for the physiotherapy students. I continued to struggle with my memory, abstraction and problem solving, and my peers still remember my strategies that I used to pass the courses and exams. I did not get the highest marks, but I managed pretty well with an average mark of B.

I graduated from occupational therapy in 1992, again a big achievement, but not where I had seen myself prior to the injury, when I knew if I applied myself would excel and be at the top of the class. It was also still a compromise based on my cognitive limitations.

2.5 Working career

I was hired as an occupational therapist, first at a vocational rehabilitation company, working with clients to help them to return to work. I experienced many challenges there, as a lot of the work required real world problem solving, versus memorization and other academic work that I had worked hard to master. I struggled to graduate from being “on probation” for a long time, but was finally hired as a regular therapist.

After a few years working as an OT, I was hired by my current employer, and again working in disability, and helping employees return to work following a health event. By this time, the world had evolved in terms of the meaning of disability and accommodating limitations. Over 20 years I have worked with clients, helping them accept limitations, living within certain restrictions and coming to terms with changed futures. All the while, I was myself living an altered future from the one I had envisioned, but not really accepting my own limitations. I was simply living within them for the time being. It is ironic that I am working with clients, trying to help them accept their altered futures while at the same time never accepting my own.

I continued to work in this way for years, always thinking I was somehow better than my current employment, and not understanding why my coworkers or supervisors could not see this. Why was I not being promoted? Why was I not successful when applying for other positions? Given that I live in a very bilingual part of the country, I blamed my lack of language abilities as the reason for this.

2.6 Change event

I attended a rehabilitation conference where one of the topics was about brain injuries. Specifically, something called the random dot test was explained by an occupational therapist. We were shown slides of some dots and were told that the brain injured population would be 5–10% slower than the normal population on this task. Well, that is exactly what happened. I spoke with the OT after this seminar and asked if I can still change the path forward for me. He responded that with neuroplasticity, I can certainly work on improving my cognitive skills.

What followed was a referral to a brain injury specialist in our city, who was able to elicit my physical symptoms indicative of brain injury and sent me for a neuropsychological evaluation to further explore my cognitive abilities. This test showed above average to superior skills in in all areas except visuospatial memory. In her report, the neuropsychologist wrote brain injury (?). She also asked me if perhaps going back to school to study for a Master’s degree would be a little too much while still working full time, and that perhaps I should re-evaluate my thoughts.

While it may have been good that a health care professional questioned the significance of my injury, hopefully based on my results, it highlighted again the need to legitimize my injury to the health care profession, something that was noted by Chamberlain [3] in her paper discussing the insensitivity of health care professionals and the constant need at having to prove oneself.

The neuropsychological evaluation proved to me that I have the cognitive abilities to succeed in any endeavour I challenge myself to embark on. However, it also spurred me on to succeed despite the fact that this person doubted the significance of my injury and the incredible recovery I had made to that point.

2.7 Finding myself

Despite my misgivings, and incredible fear, I enrolled as a special student taking one course to see if I would be able to manage graduate studies via long distance study and the computer skills that requires. I succeeded very well in the first course, and decided to apply to complete a full Master’s degree. I am now finishing my first year with two to go.

Looking at the findings of Chamberlain [3] that self-narratives could be a worthwhile focus of psychological intervention in the recovery from significant injuries, I whole heartedly agree that this process has helped me look objectively at my own recovery, and also has helped me identify that perhaps my own prejudices have been the biggest driver in my recovery. While it fine for me to help others live within their limitations and accept that their futures are unknown, I have not yet arrived at the point that I am able to accept any limitations posed by the injury.

In my meeting with the brain injury specialist, I asked him about the common statements that recovery stops after 2 yrs, as that is what is told to many with brain injuries, strokes, or concussions. He candidly indicated to me that we continue recovering, improving and changing and that the brain will not stop its recovery. However, the 2 yr benchmark is a creation of the insurance industry that enables them to determine whether people will return to work or not. However, he cautioned that one does not change functional levels after the 2 yr mark, meaning that if you are unable to independently toilet at that point, you are not likely going to be able to do so afterward.

My goal through this narrative was to bring light to what can be possible if one is given the opportunity and the tools to succeed. Through this I gleaned the importance of my internal drive and perhaps most of all the support of friends and family that was part of my transition. I also wanted to add to the literature the voice and experience of those with severe brain injuries. Chamberlain [3] noted that the experiences of this category of survivors is limited, due mostly to their limited ability to verbalize their experiences.