Spinal Cord Injury Awareness Week and Stroke Week – Angel’s story

I was once connected with another “walker”. In the world of spinal cord injury, I am known as a walker. The name is self-explanatory, it means that I have the ability to walk, which isn’t that common among people with spinal cord injuries. I sustained my spinal cord injury through a spinal cord stroke, a rare condition that accounts for about 1% of all strokes. My paralysis is incomplete, and I use a cane or wheelchair to support my mobility, but I also walk independently. Due to the nature of my impairment and how it was acquired, over the years, I have found it challenging to find community connections. Needless to say, when presented with the opportunity to meet another walker, I was excited. They were early on in their journey and I was hopeful that I might find someone I could whinge to about shared experiences but also provide support in the areas where I felt lost on my own journey. Unfortunately, before we could meet, they took their own life. I was devastated, but I understood why.

At my first outpatient appointment after I acquired my impairment, I was told by a specialist that people with spinal cord injuries have the highest rate of suicide in the first five years after injury. That comment was delivered to me as a throwaway line while they were looking at their computer screen. It was not followed with any support resources or individualised mental health planning. It was promptly followed by a discussion on the different approaches to how to “recover” or “rehabilitate” and live a “normal” life. I was left with that conversation hanging in my mind. With every month and year that my impairment remained the same, my life felt less “normal” and the weight of that comment got heavier and heavier.

During those first five years, my fears were as follows; will I die from a stroke today or will I kill myself? The two things felt equally out of my control because by that point, almost everyone around me reacted to me or treated me in ways that supported the idea that my life was now worth less than it was before. Thankfully, at some point in those five years, I became aware of the conditioning that was taking place. I realised that as a human being I had inherent dignity that should not be revoked because of my disability status. When I got to the five-year milestone, I felt relief, like I had accomplished something, dodged something unseen but nevertheless real. The feeling I felt after my “walker” friend committed suicide was one of urgency. I felt that although our journey through disability and impairment was different (as everyone’s is), I could pinpoint where they were in their journey and if I had only got to them in time, maybe I could have shared some of my resistance or helped carry the load.

I guess I’m sharing this experience as a cautionary tale and to reinforce that the way we talk about disability and impairment has a huge impact on the daily lives of the people that live with it, particularly in those crucial early stages when a person acquires an impairment or is born with one. Because of the entrenched deficit perspective towards people with impairments, the pursuit for cures and fixes, often outweighs the important element of coping strategies and adapting to “a new normal”.  There are people who have put themselves and their family in financial ruin to pay for medical procedures to try to “recover” only to find themselves in the same condition but in a much worse position in life. If someone had told me or my walker friend that after our injury, our mobility and lifestyle may be different but equally as rich and worthwhile, our journey’s may have started and ended differently. In the end, I have managed to find community connections and mentors and I’ve experienced the significant impact that connecting through shared experience and diagnosis can have.

This week is Spinal Cord Injury Awareness Week and Stroke Week. What are the odds of these two weeks colliding? About the same as having a spinal stroke I imagine! It’s pretty cool to be able to be both part of and advocate for two communities. Awareness weeks are a good reminder that if you haven’t connected with a person in your community yet, do. You never know what you will learn or how much a new connection may mean to someone else. One great way to connect, learn and partake in research is through the Dignity Project Community Hub platform: http://www.hopkinscentre.edu.au/the-dignity-project.