In a recent conversation…
with some members of OBIA’s Online Concussion Support Group, we discussed identity and invisibility. In fact, this is a discussion we have with most people who are involved with OBIA, concussion or not.
A participant commented when meeting new people some of the first questions include “what do you do for a living?” and how difficult that was to answer. Because of her injuries, she wasn’t able to work, had to go on social assistance and spent much of her energy taking care of her kids and exploring all options on how to get better. So when faced with the question of “what do you do for a living,” it was hard to respond.
Is she a person with a disability, a brain injury? Is she in transition, or job retraining?
A survivor we have become,
Limitations there are now some,
A metamorphosis has taken place,
Still have that same face,
A struggle becomes each day,
Learning to survive a new way,
The new you that does exist,
The old you sadly missed,
This new you, you must embrace,
The old you gone without a trace,|
The injury to your brain,
On you puts a strain,
Loved ones as well,
Ever since you fell.
– Brian, Brain Injury Survivor
How does she identify herself now?
We discussed the stigma attached to disability and unemployment, and how we live in a culture that can reward people for being overworked and exhausted. It’s like a badge of honour for many and a topic of office chatter about how little sleep we got the night before because we are so busy, how we put more hours in at the office than the next person. How do you compete with that in a social setting? We spend so much of our adult life striving for position, for status. We are proud of how busy we are and how needed we feel. In an instant that can be taken away from you, and it leaves so many people wondering: who am I now?
Of course, this issue is much bigger than employment. After a brain injury, people can feel lost and unsure how they fit back into their everyday life. Parents have a harder time taking care of and supporting their children, time with friends is limited and, for many, those friendships eventually fade. Hobbies, sports, and activities they were passionate about become dreams of the past and people are often left to ask: “what now?”
OBIA explored this topic further in our recent Brain Injury Awareness Month campaign, Unmasking Brain Injury. Unmasking Brain Injury is an international movement and, through the coordination of OBIA, Ontario became the first province in Canada to participate. We disseminated over 1400 masks to 26 participating brain injury associations/partners across the province and received strong support for the project to continue outside of Brain Injury Awareness Month. The mission of Unmasking Brain Injury is to promote awareness of the prevalence of brain injury. This project gives survivors a voice and the means to educate others of what it’s like to live with a brain injury; to show others that persons living with a disability due to their brain injury are, like anyone else, deserving of dignity, respect, compassion and the opportunity to prove their value as citizens in their respective communities.
I have had the privilege to see some of the amazing work that people with brain injuries created and so much of it speaks to the idea of identity and invisibility. One person described how they do not understand why people say ‘why don’t you work?’, ‘you look normal’ and ‘don’t be lazy’. They went on to say if those people only knew what was happening under the mask they wear and described themselves as unrepairable or unfixable, but at the same time were aware of who they once were. For most people, brain injury is not something you can see from the outside, but something you experience from the inside out.
I asked the question earlier about how one competes with all of these changes and the people around us. The more I learn about and listen to people’s experience with brain injury, I learn that many of those who have come out the other side of this injury decided not to compete with their old selves, but to reinvent a new self. A blog I read from brokenbrilliant.worpress.com spoke about identity and brain injury and said, “the more time spent trying to re-create the old self, the less time is spent creating and discovering new parts.” I find this interesting because I am often asked about when to stop trying to heal and when to start accepting the new normal. I absolutely do not have an answer to this question. It is a personal one and depends entirely on the individual. What I do think is that we can be open to change, and open to possibility throughout the recovery process. One day at a time, moment by moment, we can live and see what the next day brings.