The Whole You

A few months ago I experienced serious writer’s block as I tried to draft my monthly BrainLine article.

“Why don’t you write about being a teacher?” my husband, TC, offered. “Or maybe something about yoga?”

“Umm, because it’s supposed to be about brain injury,” I retorted.

He sighed. “Why does everything always have to be about brain injury?”

Frustrated and impatient, I quickly shrugged away his comment. “Because it’s a website about brain injury! That’s why!”

The truth is that I understood his point. Like TC, I also have days in which I tire talking about brain injury. Two years ago, before brain injury ever entered my lexicon, I was a fourth grade teacher and a relatively new mother. My entire identity was rooted in these two roles and I was comfortable. I certainly never envisioned myself becoming an advocate for any issue, and then, almost instantly, I found myself living and breathing traumatic brain injury.

My relationship with TBI is complicated. I love connecting with other people with brain injury and their caregivers. I find deep comfort in sharing our story and hearing the stories of others. But it has also presented a real identity crisis. Yes, our family has been affected by brain injury, but how much are we willing to let this experience define who we are? How much of our future will we allow to be shaped by it?

Realistically, brain injury is not something from which we can ever get away. It’s like an invasive plant that seems to have suddenly covered every surface of our existence and there’s no denying that we are constantly maneuvering through it and around it. On the other hand, TBI is not everything. It’s not the cause of every tear, disagreement, or stressor in our lives. It just happens to be the most prominent.

TC and I are very reluctant to let TBI define who we are. There are simply too many other components to our lives and the people we’d like to become. But, as we’ve learned, we also have to accept that we can’t be everything all at once. The past year has required me to juggle a lot of roles and I have struggled — I mean, really struggled — to balance the demands of these roles as I’ve rebuilt my identity. As a teacher returning to the classroom after a year-long absence, I wanted to be as devoted to my students as I was in years past. I’d like to chalk this up to my strong sense of responsibility, but I also wanted to prove that despite my catastrophic life event, I was up to the task. However, the more entrenched I became in my job, the greater a failure I began to feel as a mom and a caregiver. I had thrown TC into the deep end of the pool only twelve months after his injury. Not only was he now in charge of handling all of his therapy, he was also responsible for caring for Jack three days a week. Despite his continued insistence that these challenges have been “good” for him, I felt on many days that I was giving my family the short end of the stick during a time in which I owed them more.

In the midst of juggling these feelings of guilt and responsibility, was the lingering question many caregivers neglect to ask: what about me? What part of this new routine, this new identity, was devoted to me: my wants, my ambitions? As soon as I returned to work, I stopped carving out time to write. For many months, I stopped jogging and practicing yoga — all of the activities that kept me sane following TC’s injury. As much as I have wanted to incorporate these many disparate roles and hobbies into my new self, the past twelve months have made me appreciate the difficulty in prioritizing our roles and accepting life’s very natural limitations.

I wonder how many others in the TBI community also struggle to define themselves post-injury. Are there others, like me and TC, who walk the delicate tightrope between refusing to be defined by brain injury, while also remembering that we can’t be everything to everyone, in equal parts, all at the same time? How can we all manage the perpetually shifting pendulums of our identities, finding both security and balance in who we are and the lives we are leading?

What I have to understand is that we must reserve some part of our identities, our existences, just for ourselves, to be filled with the roles that restore us, the ones that bring us joy and self-fulfillment. I am a caregiver, but I am also a wife, a mommy, a fourth grade teacher, a yogi, and a writer. Never in equal parts, always in fluctuation, and often with limitations. The whole me is an evolving reflection of my quest for balance and a life well lived. And, admittedly, there are moments that feel a whole lot like failure. But that’s when I know it’s time to stop and readjust. Maybe it means taking a day off from brain injury, stopping myself in conversation if the topic arises, or letting my e-mails go unread for a little while. Or perhaps it’s simply dropping the bravado at work and admitting, “This is too much for me right now.” The whole me has a lot to give, but not without the balance of taking a breather once in awhile. So I ask, who are you in your post-TBI life? What makes you whole?