The purpose of this blog post is to address the impact on one’s life once they have sustained a TBI. When someone sustains a TBI, it affects many others within the survivor’s network. This can be family, friends, coworkers, etc. while the survivor is working towards returning to life before the TBI. The reality is 10% TBI survivors don’t recover. Many are then diagnosed with Post Concussion Syndrome (PCS). On the surface, everything appears to be “fine” because the survivor may not have visible damage. This is why we call TBIs the invisible injury. The PCS warrior may try to find ways to live and also discover that much of life is changing without our control. Being diagnosed with PCS is a struggle to not only understand but also accepting life will not return as before the TBI. If we can’t return to our previous life, we need to find a “new normal.” That’s ok! It’s taken me WAY too long to face MY reality. Letting the pieces fall into place as intended is so hard to accept! The grieving of one’s self is not only challenging but heartbreaking. Talk about a 180 life change. It’s not like there is a protocol for those of us who develop PCS. I’ve had to find my new normal and create a new routine which is much more simplistic. Let me be clear – it’s taken me years to get this schedule down!
Back to the network, let’s put relationships in 4 broad groups- family, friends, career and community.
So let’s say you sustained a TBI, initially your network of course wants to see you heal. After a few months, they start wonder why isn’t s/he fully recovered? Issues start boiling up regularly as the role you held in all 4 of these groups has clearly changed. Trust me, TBI survivors put a lot of effort to “get back to life.” The reality is that sometimes TBIers, even high-functioning ones, do not fully recover.
In time the network starts getting frustrated in that others feel they have been supportive yet you are not “recovered.” The fractures begin to become inevitable. No one understands why you aren’t getting better. Everyone has an opinion, since they know of others that have had concussions or even those in our support network have had a concussion. What I’m getting at is everyone knows someone with a TBI so they think they are experts! They clearly aren’t and I’d proceed cautiously with these individuals. You get the picture – you are no longer you. Guess what? This significantly affects your network and it is the undoing of the old you. Accepting the “new normal” sounds like that’s for the “losers” or people on the fringe of society. Many PCS warriors not only want their old life back but work very hard to get it back. Unfortunately, everyone is not able to return to their old life. What if you can’t, no matter how hard you work and try?
Let’s say in your family you play a particular role. Maybe you are the breadwinner. Loss of income affects the entire family significantly. In your friend groups, perhaps you are the organizer or the glue that holds the groups together. Clearly your role changes with friends or maybe they become upset if the survivor is not the same. How about the survivor’s career? It’s not that far fetched of an idea that someone may not have the expertise they had before the TBI. Also, a PCS warrior may not have the endurance they had prior to the TBI. What if a survivor volunteers with an organization they feel passionate about? They may no longer have the endurance to continue volunteering. My point is that many survivors WANT their old life back yet returning to their old life is not attainable. It’s sad, lonely, and troubling to live with this “new normal.” Many of us are misunderstood and judged. We didn’t seek out to have our lives turned upside down. Many of us create a new network to survive.
In conclusion, whether you are a TBI survivor and PCS warrior or a caregiver or practitioner, the struggle is real. With everything going on in our society, kindness is not that hard! Please educate and come from a place of understanding before judging someone that is truly truly doing their best. I hope one person can relate to this blog and perhaps add more insight.
Thank you for reading and stay tuned for my next blog post about being “Broke as Joke: TBIs and Finances.”