Explore. Dream. Discover.

Explore. Dream. Discover: Caregiving and Brain Injury

We live in the northeast where it has been unusually cold. Some days, temperatures are below zero, and other days, the numbers just toy above that line. We’ve had some significant snowfall, and while it is majestic in the state of falling, once it settles it is just a mess. We live in the woods off the beaten path, where fortunately our neighbor plows for us. The snow still gets packed down leaving our driveway a solid sheet of ice. Winter has left me feeling isolated, lonely and longing for warmer, brighter days, reminding me that I feel the same about brain injury too.  Caregiving for a loved one with brain injury can leave you feeling like you’ve been left out in the cold.

The other day I passed by an ice-covered overhang comprised of long pieces of frozen drips that had been captured in time. Solid ice was just hanging. I thought about my youngest son, who is a rock climber. He has told me how challenging ice climbing can be. Special tools and shoes are necessary, along with an ample supply of confidence and trust in yourself and your climbing partners. You have to have knowledge about the treachery involved in getting to the place you are trying to reach, even if that place is merely a few feet away. For the climber, it is not always about reaching the top. Sometimes, it is just about the climb.

I thought about the emotional space I occupy these days. I am trying to help Taylor get to a better place, a place of more healing and recovery, but I feel ill-equipped to do it.

As I looked at the huge sheets of hanging ice, I envisioned myself attempting to climb them. As I pictured my hands grasping for a surface that I could not grab, I felt myself slipping. I understood that at times this is how I feel about caregiving and Taylor. I see the destination, just like you. Perhaps for your survivor, the destination is returning to a job, resuming school, getting involved in programs that promote more cognitive awareness, better social skills, or acquiring an overall improvement in quality of life. We see the goal, but reaching it feels impossible.

As Taylor’s mother, I have had a history of being hard on myself. Admitting this truth is difficult; because it is something I still wrestle with. It comes from a place deep within that thinks I should have been able to protect Taylor from this tragedy. The blame game is a slippery slope, but very much a part of understanding the complexities of what happens after tragedy. All of our stories are different, and sometimes there is no place for blame to be assigned, but it is a part of my narrative. If it is part of yours too, I want to you to know you are not alone. Around our second year into this, I realized that self-blame has the potential to destroy the people Taylor needs most, and I continually work to let it go. As frustrating as it is, we cannot ever go back and change the event that brought brain injury into our lives.

So how do we get to new places within ourselves? And how do we bring our survivors to the places that seem impossible? I think we go back to a thoughtful quote by Mark Twain, and we take it in.

“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”

First, we explore. None of us wanted to be thrust into the mess of traumatic brain injury. But here we are. It is scary. Five years in, I might be more afraid than I was the first time I heard the words brain injury. But I understand that I have work to do.  Growing knowledge is power. Get in touch with other survivors. Reach out to your state brain injury association. Attend conferences if you can. Ask hard questions from people who are further along than you in their journey. Explore the possibilities and the truths involved with your unique situation.

Exploration sets us up for dreaming. Nothing happens overnight. We learned that hard truth early, as Taylor lay unresponsive for weeks. Recovery moves fast until it becomes painfully slow. Set attainable goals: two days from now, two weeks from now, two months from now, and two years from now. Dream about the things that are possible and the impossible too. For example, Taylor had a beautiful opportunity to practice yoga in our community. And then his instructor moved, leaving us in an awkward place. I tried thrusting him back in, and he wasn’t ready. Also, no one was quite ready for him. But I am working on bringing yoga back. I have a plan, and it has been set in motion. It is a simple dream. I want yoga to be part of his recovery. A bigger dream would be his return to some type of work. That dream is harder. Not impossible, but harder.

Finally, we discover. Recently in talking with another survivor’s mom, I shared that I think of her often, and she reflected the same sentiments. “The problem,” she said, “is that we are so burdened with our own lives that we hardly have time to connect with others.” The thirty-minute conversation was good. I again discovered that I am not alone in my aches, my sadness, and my frustration. I realized that the feeling of climbing up a seemingly impossible ice cliff is not that different from how my friend is feeling. Discovering that we are not alone is just as powerful as feeling that we are…but with the opposite effect.

Exploring. Dreaming. Discovering. It will look different for each of us, but something that is worth our while.