October 30, 2017 was a first—a short-lived first, but a first, nonetheless. One year ago today, Matt started cognition therapy. Like last week, we drove to the Kessler outpatient building and I sat in the waiting room with my headphones plugged in while Matt went first to cognition therapy and then to physical therapy.
Two hours later, with a crisp manila folder tucked under Matt’s arm, we were heading home. I asked Matt what he’d worked on during cognition therapy—the idea of cognition therapy was completely novel to me. But answering questions remained a struggle for Matt. He started to tell me about his session, but got side tracked by an irrelevant story and then lost his concentration completely.
The manila folder provided more answers. The folder contained evidence of what Matt had worked on and contained his homework for the week. The work ranged from a list of words that required Matt to supply either the synonym or antonym of the given word, or a story, which required Matt to put the events in the correct order. (Ex: Jim bought a soda, but before that he gave Sara a sandwich.)
I was thrilled by the prospect of homework for Matt. Before the hydrocephalus and poliovirus and Glioblastoma entered our lives, Matt had helped run a company; he’d managed employees and spearheaded campaigns and used creative thinking to solve problems. He’d held strong opinions on business and politics and finance. But after hydrocephalus and poliovirus and Glioblastoma, Matt hadn’t been able to do any of that. He spent a lot of time napping and watching television. I’d begun to worry (yes, more worry on my part) that maybe Matt was growing bored. And boredom could turn into something worse. Idle minds and all that.
I think Matt was looking forward to homework and the prospect of setting his mind to a mental task. I remember how he sat in his spot on the couch, scribbling words into the margins of the papers after dinner. I remember how G and H giggled about Daddy’s homework as they sat to work on their own homework. I remember the thread of sadness in my heart as I watched him struggle to complete the assignment—we both knew that in his previous life, these tasks would have been simple for him.
But every sprint to the finish line has to start with a first step, and this was Matt’s step back to himself.
As it turned out, Matt was racing to that finish line to reclaim himself on top of a train speeding down the track in the other direction.
When I look back, I see cognition therapy as a necessary manifestation of our hope. The specific exercises were designed to help Matt regain the brain function he’d lost after all that he’d been through at Columbia. But cognition therapy could only work if Matt’s mental capacity remained stable. His brain could only be re-trained if the attack against it was over.
And it wasn’t.
When I wrote in my About Me page that Matt fought gracefully over twenty months, I am referring to a million moments, including these moments, when Matt sat, night after night, and worked to retrain his brain, even as his brain continued to betray him.