Another holiday has passed, and I am glad that it is over. Don’t get me wrong, we had a really nice holiday with extended family, a visit up north to get our Christmas tree, and time with the kids to just be together. But like always, there are additional challenges that have to be worked around that can make any holiday seem like a lot of work. These challenges may seem small, but trying to do a lot of small adjustments often lead to a lot of exhaustion.
I watch my fellow families of the brain injury world and I feel like an outsider sometimes because what we have in our world is minor compared to what many are dealing with in their world. Arguments, violence, drugs and alcohol abuse, verbal barrages that seem endless, and the non-stop conversations about the same thing seem to be pervasive through the lives of so many that we encounter. Any family can have challenges; I think all of us can agree on that. But when a family is trying to work around the often times invisibleness of a brain injury during the holiday season, life can feel completely out of control.
I often wonder how many hours a family spends trying to create the needed space, quiet, and organization to work through a single, typical day living with a loved one with a brain injury. Is there a number that you can guess? Is it one? Three? Five?
I think that number varies for families depending on many factors, but what is important to realize is that families, spouses, kids, parents have to actively make time in their days to ensure that an individual does not get overtired, or over-stimulated, stressed or angry. Not giving too much information, giving not enough information, telling someone verbally versus writing it down – so many ways to communicate and interact, and just as many ways to breakdown a day into a mess.
For us, we are still learning the art of communication – it is funny being a speech therapist and still working on the best ways to communicate with Frank every day. Learning where the limits are, what may or may not be needed in a conversation, learning when to talk and when to walk away. Funny, it is almost comparable to when we were first married, and we were learning to get around one another in our own space.
Brain injuries change people; they change the individual that was injured, they change the family around them. They change the structure of friends – many leave out of sadness, fear, or just not understanding this new person that is here now and desperately wanting the “old” friend. Brain injuries change everything around the individual; brain injuries change the world.
Those of us on the outside are given the tasks of holding it together and guiding our loved one through the storm; those on the inside live in a storm that we can never understand.
My voice today tells me that we all work hard to find the best way to get through the changes and challenges, but I know it isn’t easy for any of you. Facing the holidays knowing that many days you don’t even want to be in the same house anymore is daunting. Know that this family around you is vast, often silent in their suffering, but can hold hope for you and your future. I choose to not be silent, but we know that we are one of the lucky ones with recovery that was substantial, and people that still work alongside us to see us through the hard times.
We pray your Thanksgiving had moments of joy and calm. We will keep you in our prayers.