I took a while to partake to virtual support groups, but lately, I've found real comfort in being part of them. I acquired my brain injury from encephalitis (a rare brain inflammation) and The Encephalitis Society recently launched a virtual support groups for people living in Australia and New Zealand. This week was my second participation to this particular support group. Although there are lots of cross over between encephalitis and any other brain injury, I've found it comforting to liaise with people who have a similar onset to their traumatic brain event. The group was comprised of very lovely people which are at different stages of recovery. Some are only new to encephalitis recovery and some have been navigating brain injury recovery for years. If you have or know someone who has a brain injury, you'd know first hand that brain injury recovery is a very complex process. On top of all the physical challenges that will be experienced, losing our sense of self is perhaps one of the most complex aspect of recovery. Getting our heads around this one may take a long time and it may trigger a lot of soul searching too.
Bursting the bubble
Many brain injury survivors can clearly draw two pictures, one of them before brain injury and one of them after brain injury. In some cases, MRIs will reveal the extent of the changes that occurred in the brain, but it won't identify the myriad of subtle changes. Identity is one of those change that even the best MRI won't be able to pick up. When your reality changes so suddenly, your identity can be shaken to its core. When I refer to identity, I'm thinking of a person's personality traits, their abilities, what they like/dislike, their beliefs, their self-image, their self-esteem and what makes them unique as an individual. My personal experience has been that I have tried time and time again to get back to my old self. Even four years on into brain recovery, I can still compare my current self with who the old Vero was. It can trigger frustrations, sadness and even anger. See, I genuinely liked many aspects of the old me…at times, I even think of the new me as a lesser version of who I used to be. Tears are running down my cheeks as I’m writing those words as I know I’m being so SO hard on myself. However, I know I'm not the only brain injury survivor to have these thoughts. Those thoughts are real and I think that it's important to acknowledge them in order to have a fighting chance to move forward. Perhaps recognising that this is a real dilemma is the first step to allowing us to work through it?
Blowing a new bubble
During my latest virtual support group, I absolutely loved listening to those further ahead in their brain injury recovery. Their lives still weren’t perfect, but most seemed to have found a way forward. Many came to realise that where their brain injury shut some opportunities in the earlier stages of their recovery, it may have also opened doors that they would have never come across otherwise. If you've taken part to support groups, you would have no doubt heard similar comments, but when you find yourself to be in the deep end desperately treading water, these words tend to have the same effect as water off a duck's back... But every now and again, someone will phrase things differently, just enough so you can relate. In my latest support group, one of the participant mentioned something that I could really relate with. Their words went something like this…
”What you used to be is irrelevant, energy is much better spent on what you can do now”.
I remember writing them down as I knew how true they were. Although I may sometimes struggle to put into practice, they acted as such a powerful reminder that things change constantly, that no situation is forever set in stone. Rummaging through the past, regardless of how awesome our memories might portray our past to be, won't change the current situation. Spending time identifying what it is that I can do now may be the key to accepting my new identity and making the most of this second chance. Because it is an absolute second chance. Yes, things are different, but they could have been much more different for me and my loved one too.
So I'd like to thank all of those affected by a brain injury that years on, still join support groups and offer their words of wisdom to those in an earlier stage of recovery. Your contribution is cherished and impactful as you can bring a perspective that no one else can offer!