Not only do the letters TBI mean “traumatic brain injury,” but they also mean totally brave individual. In recent travels, I’ve had the opportunity to meet several folks with brain injuries, and those who care for them both professionally and personally. This group is comprised of some of the strongest, bravest, most inspiring and resilient individuals. In the midst of their brokenness and challenges there remains an absolute resolve to keep going, keep researching, keep connecting, and keep believing in a better tomorrow for our brain injury survivor community.
I’ve been fortunate to have a few personal encounters with people who are rocking the boat of brain injury awareness, and from them, I’ve gathered some valuable pearls of wisdom. No matter if you are full of energy and vigor, or feeling a bit defeated I hope these pearls ignite a fire within your soul. Brain injury itself causes the pendulum of our emotions to swing, and to survive the long haul, it’s crucial to practice leaning in to thoughts that are true and good.
"There is a light inside of you that the world needs to see.”
These words were spoken to me by a man who is wheelchair bound, has profound communication challenges, and whose body is often uncooperative. As he took his time speaking, I took mine listening. Those of us living with brain injury, whether by surviving it, or caring for a survivor, know that within the daily grind, our light can easily be extinguished. Feelings of defeat are common as we witness recovery move one step forward then two steps back.
It is easy to feel overwhelmed when frontal lobe issues dictate the tone in our homes. It is easy to believe that you are failing at either recovering or caregiving when clouds of brain injury reveal just how dark and stormy things can get. My challenge to you is this, keep the candle inside of your soul alive.
Doing so may mean you are crawling around on a dirty floor surrounded by darkness, trying to find the only match you have left. But those in your community, your family, your friends, and even strangers, need your light. Suffering is not exclusive, and the light inside of you may help another to keep his or her flame burning.
You are a living, breathing example of how to endure suffering and keep hope intact. Your light is like no other. Respect that light, honor that light and share it when possible.
This tip is dedicated to my wise friend Joe who told me, “Just say ‘NO’ to the plateau!”
I’ve come to hate the word plateau, but recognize that it has a purpose. You might be thinking: how can I transition to the next place when my survivor cannot eat, walk, speak or participate in life in a way that I can actively see and appreciate? The only words I have are these: I don’t understand how recoveries unfold in the varying degrees that they do, but to survive it all well, we must keep forging ahead. For each of us that looks different. There may be things that my son will never accomplish in his life, but my job right now is to help him discover what he can do. Saying “no to the plateau” involves stepping outside of the expectations and exceeding them in ways that can be done.
Take time to reflect how far you have come, acknowledge the things that have been accomplished, and then address what needs adjustment.
A most valued pearl came from a brief conversation with Joseph Fins, a distinguished professor of medical ethics. He explained that many families attempt to start new things from the ground up—almost like reinventing the wheel.
We must seek to find the wisdom and growth that occurs when we start at the plateau.
A lot of the hard work has been done for us. We may not be equipped to find a cure for mood related brain injury disorders or seizures, but we can gather the research of others, cross off the list the things we have tried, and start from there, versus attempting to start from scratch. Things get complicated when we feel like the assignment is to do it all.
Brain injury is often called a marathon. Within that marathon, there must be teams. Pass the baton when you are able, and run when you have the energy to do so. You cannot possibly do both. Be where you are, be there well, and then, work hard to get to the next station.
My father offered me the final pearl. In full disclosure, I need to share this: praying is often hard for me. Expecting more is also difficult. Over the past four years, I’ve been on a roller coaster ride like no other. Many days were filled with pure terror. And just when I thought things were okay, the bottom fell out. That happened often. My family’s situation looks different than it did in the beginning, but brain injury still has ugly surprises.
At some point, I have to allow myself to accept that within the angst and struggle there can be beauty. Instead of always being afraid of the future, can I be brave enough to dream and to believe it might not be as scary as I thought? Can I allow myself to hope that it won’t always feel so hard-won?
In a recent conversation with my father, I noted a profound observation. I noticed that while sharing my hurt publicly, discussing the rawness of my emotional wounds, and expressing my most difficult truths, something lovely transpired. I was reaching others. And he said these words, “Let there be more.”
What a beautiful mantra for survivors everywhere. “Let there be more.” And let us be courageous enough in our own hearts to believe that there can be.