Has anyone ever asked "How are you?" and you reply, "Fine thanks. Why?"
Well, you look tired.
Uh oh, it is the caregivers tell - when people not living in the world of caregiving start to ask questions, and may not believe you when you tell them that you are fine.
It is when what is on the inside starts to show on the outside.
Few individuals understand the true nature of caregiving, especially caregiving for an individual with a brain injury. Although people can empathize with the situation, can anyone truly understand the changes that have occurred not only for the individual with the injury, but for those around the now trying to live within their universe.
The depth of that understanding is beyond most people.
I have found that there are many truths to caregiving, but for right now, we can talk about some of the harder truths to brain injury. These truths live with the caregivers at all times, and although there are ways to break from these truths, they always come back to the center of where we live.
1. Brain injury can change a relationship at the core which can lead to a completely different relationship than one that was forged prior to the injury. This truth is the cornerstone of the lives of those living with an individual with a brain injury. Although relationships can survive and sometimes thrive following a brain injury, relationships are invariably altered when one person's brain, and often their personality, are no longer what they once were. Learning to navigate a life with someone "different, but the same" can be very difficult, and often needs many people supporting both individuals for the long term.
2. Frustration and sadness occur in both directions. This truth is not meant to be a sad revelation for the masses - but it is want to bring to light that moments of sadness and loss are not only felt by the partner, friends and family of the individual with the brain injury. The individual themselves often feels great loss. This loss can be the loss of identity, jobs, partners and family that no longer understand the "new me." Many times the loss is so great that individuals without support turn to self-destructive behaviors, and further lose connection with their former lives. But this does not have to happen - understanding by those around an individual that has survived a brain injury can be the leading cause of success and thriving following the injury. Learning how to navigate new territory is not impossible.
3. Life is not over, even on the days you feel you can't go on. Trust me, this is the biggest truth of them all. We all have days when we feel we cannot go on with this life. And maybe you cannot go on with the way that things are today. Developing a network of people, professionals and confidants that can allow you to all through the rough days and the hard times is imperative to success. Not everyone can stay in a relationship following a brain injury. Not all relationships survive a traumatic event. But individuals can live successfully when you use those around you to ensure that everyone is working together for the best outcome for everyone. Life after a brain injury looks different for everyone.
Although these three truth are not the only truths, they are the truths for someone today, and probably for someone tomorrow. Brain injury is life altering for caregivers and survivors alike, and caregivers carry new burdens that change who they are inside.
And what is on the inside is often not very pretty.
It's held tight against the chest, not for others to see.
But sometimes, people begin to notice what is on the inside, showing up on the outside.
Don't be afraid to let it show. The insides are what are important anyway.