October 9, 2011

Brain Injury and building a new life afterwards

I once believed that I could not grieve for what I do not remember. I no longer believe that. I do grieve for what I can no longer connect with. Phantom memories. “Your pies!” “Your bread!” Friends tell me they miss my baking. One woman whom I still don’t recognize told me I used to shred beets into my chocolate cake batter. Her comment reintroduced me to an evaporated passion I no longer remembered and had not missed until then.

via nytimes.com

From a perceptive, and I think beautiful, essay on recovering from brain injury in the New York Times today. Baking bread was kind of a watershed for me. I couldn't muster the strength I needed to the first time I wanted to, but I could "coach" my wife through the job. A year later coaching gave way to frustration (and desire), and I got my hands in the dough. Now, I've resumed baking most of the bread for our house.

My literal and figurative use of baking is different from the author's, but there's much to recognize and respect here.

Brain injury rehabilitation is time-consuming and far from the sexy dramatics of pharma-funded clinical trials and fancy trauma toys. In other words, brain injury rehabilitation can be more complex than brain surgery. It is about forging new connections and experiences and learning to live with the dynamic, non-linear realities of my reconfigured brain. It is not about recovering inaccessible memories of my life before my accident.

If you want to connect with someone who has a traumatic brain injury, hire us, include us in conversations that regard us instead of speaking about us in the third person in front of our faces. And instead of pressing us about what we “must” remember from our past, simply be present with us. People with traumatic brain injuries are often scolded for having “no sense of time,” but the present is, for many of us, our only authentic time.

So when you see us, please don’t be offended if we don’t remember weathering earthquakes with you, baking your birthday cakes or bouncing your babies on our knees. We’re struggling to make sense of a world that seems brand-new — sometimes wonderful, often overwhelming — with all the courage we can muster.