After the first meeting about what had happened to Theo, under the cold blue gaze of the pediatric neurologist, other meetings followed during the nine days of Theo’s stay in the newborn intensive care unit. This was the first time I heard medical talk about the brain in a personal situation.
I don’t remember a lot of jargon or highly technical language being used, which anyway would not be helpful to the new parents unless they themselves worked in a medical profession. What stands out to me, both then and now, was that we heard one term used often and another term not used at all, never.
We heard about the plasticity of the brain, or the ability of the brain, by making new neural connections, to heal itself and recover function or at least adapt as best as possible. We were reminded that older people, after having a stroke, have been able to recover functions like walking and talking with therapy, because of this plasticity. And that, if even people much farther along in their lives can improve, how much more a newborn might be able to. This was meant to be encouraging, but it was hard to feel that way.
After it had been explained to us that an MRI of Theo’s brain after the seizure had shown no activity in the occipital lobes, my husband said to me in an aside, “That’s it, baby—one-third of his brain is gone.” Paradoxically, after hearing the details, I began to feel more hopeful. It seemed that just knowing the situation helped me get on my feet, so to speak. So the introduction of the idea of plasticity, along with the assurance of early intervention and Theo’s case being carefully followed as he grew up, must have been hopeful signs for me. I say “must have” because the memory of what happened and all of the meetings afterward has been so painful that I don’t know how much I’ve retained.
Later, we heard more instances of braintalk, like brainstorm used as a descriptor for a seizure, and other terms like deficits and worse, global deficits. Words have always been important to me, and the experience of being Theo’s mother has made me hypersensitive to words used with reference to people with special needs and issues.
Plasticity was a rather cold- and clinical-sounding but positive term, allowing for some hope in the face of the unknown stretching ahead. The term we never heard was brain damage.
Words matter. Brain damage focuses on the effects of an injury to the brain. Brain injury describes the situation as something that happened to the brain—whether from a known or unknown cause. There is all the difference in the world between an emphasis on damage to the brain and injury to the brain, between a person seen as “damaged” and a person seen as injured.
And what follows an injury? Therapy. Follow-up. Hope. And at some point, acceptance?
Next: More on Overtalking: Speech and Language at Home
Note: I inadvertently disabled the comments for the previous post, Faith on the March, sorry! You’re welcome to refer back to it with this (or future) posts.
Braintalk
I love learning more about you both. Your writing is addictive.
Thanks for these wonderful essays and remembrances as you and Theo became acquainted. I look forward to receiving these sometimes revealing thoughts and sometimes joyous connections with you.