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Jack Sisson's TBI Blog

A hug is duct tape for the soul.

From The New York Times Sunday Review:
Jane Rosett is an artist at work on a multimedia project, “Adaptivitudes: Navigating My Brain Injury Rehabilitation,” and currently a brain injury patient at Spaulding Rehabilitation Hospital.
“WANT a piece of gum, Jane?” asked my friend Andrée.
“What?” I asked her.
I didn’t know what she was talking about.
“It’s Trident.”
It was delicious.
That evening, I told my friend David about my day’s big discovery. “It’s called gum and you chew it and it’s fun and there’s this one kind that will let me blow bubbles!”
“Yes, it’s called bubble gum, Jane,” he told me, patiently.
Fifty-nine months ago, I was wearing my seat belt and my car was stopped when another vehicle hit me, causing my head to fracture the windshield. That damaged my right temporal lobe, one of my neurologists explained when he told me I had a traumatic brain injury. I lost my long-term memory, and have been a brain injury patient within Harvard Medical School’s teaching hospitals ever since.
At 45, I was jolted into an entirely new existence. Memories that connected different parts of my life fragmented and vanished. It took 26 months before I was able to thread my way back unattended to the house I had lived in for 17 years.
I am often amazed to find that people recognize me when I have no recollection of them. People who love me grieve what they claim to experience as the loss of elements of my personality that I cannot recall having been part of me. Others tell me that I seem to have become an altogether different person. I am told that I used to be a real “people person.” Today, however, I can barely stand being around people. And I can get irritable in a nanosecond. I am told that my work before the accident pertained to the AIDS pandemic; I was a treatment activist, founder of several early AIDS organizations and a photojournalist, as well as an artist. But I have no more memory of a photo on the cover of The New York Times of an exhibition I curated 10 years ago than I do of a watercolor I painted when I was 3 years old. When I see my pre-accident work, I am introduced to it as if for the first time. As if it was created by anonymous. Did I make that? So I’m told.
I am sometimes fed my own résumé by strangers in the street. One day, a woman introduced me to her children as “one of Mommy’s sponsored artists.” I looked more confused than her 1-year-old.
In 2007, I ran into Alice and Amma, a couple who said we’d been friends and colleagues for over 20 years. Amma recently reminded me that at first I didn’t believe them, and how upset they’d been. And that it was Rifkah, my dog Rifkah, who solved the standoff by recognizing them. I figured that if Rifkah knew them then maybe I did, too. I have no idea.
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.

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