Here comes another caregiver confession: sometimes I feel guilty.
OK, let me try that more honestly: most days I am guilt-ridden about something. Guilt is not an unusual feeling for me. I’d say I was born with a healthier dose of the stuff than most people. But it’s also true that the experience of caregiving has amplified my sense of guilt, making me feel, at alternating times, undeserving, selfish, and inhumanly lucky.
Like many caregivers, one of my greatest sources of guilt stems from the fact that I’m not the one with the brain injury. No matter how hard my day has been, no matter how much my body hurts, or how overwhelmed my head feels, I know it will never compare to the challenges my husband faces in navigating this complicated world as a TBI survivor. My life, in comparison, will always be a little easier, a little more manageable – and for that, I am supremely grateful. And a lot bit guilty.
My husband has lost so much to brain injury that I know it’s unfair to harp on the areas of my life that are less than perfect. But I’m also human. And as such, I can’t help but surrender to the human condition of wanting more. Logically, I understand this is how we are built: to want. Just as TC’s desire for more fueled his hard-earned TBI recovery, I too can’t resist making demands from the universe. I want more time to pursue my interests. I want more help in managing the circus that is a four-person/one dog/one fish household, and I want to feel taken care of by the person I love.
They’re the same wishes shared by many folks I know, but my situation is compounded by the silent yet significant fifth member of our household – brain injury. My head is home to a constant battle between greed and guilt, leading me to wrestle with one question: how much is it OK to ask for? In other words, how much is it fair to demand from someone who is already working harder than most just to make it through each day? And as a wife, how do I count on my husband to be a true and equal partner, when deep down I’m pinged with the feeling that I ought to just be grateful he’s here at all? After all, what kind of shameless person asks for the cherry on top of a prayer so wonderfully answered?
Me, I guess. That’s who.
While I don’t have answers to these burning questions, I’m learning to accept the inevitability of my human desires and the duality of my emotional experience. Yes, I can be a grateful person and still hope for more. Yes, I can want more and not be selfish. Yes, it is natural to struggle with guilt, but it’s also critical that guilt evolve into honesty, not repression or regret.
The idea of survivor guilt is not a new one. In fact, it’s a term that was coined back in the 1960s as therapists began to observe a range of guilt-related symptoms among Holocaust and other trauma survivors. Later on, it was adopted under the umbrella of post-traumatic stress (PTSD). As I’ve learned over the past five years, PTSD is one wide-reaching umbrella. A lot of behavior and emotional experiences are encompassed within that classification – all of them completely natural. As one yoga teacher so wisely explained, post-traumatic stress disorder is not disorder at all. It’s the body and mind’s way of reestablishing order.
I think that’s what TC and I are doing most of the time: reestablishing order. Rebalancing expectations. Five years in, I now understand the fallacy in believing we might achieve either state. The TBI journey does not point toward one outcome or destination. We are simply traveling. Evolving in the process.
The facts of brain injury can’t be changed. I did not suffer the injury. My husband did. But we are both trauma survivors. No amount of guilt can rewrite those certitudes, but it is both human and empathic to wish things were different. To feel grateful we’re all here. To be confused as hell about how to move forward.
There’s enough to feel bad about in this world of brain injury. And while we can acknowledge guilt as a natural part of the process, we certainly don’t need to let it eat us alive. We deserve more than that.