by May Joseph
On October 30, 2012, Hurricane Sandy enveloped downtown Manhattan in a total blackout. The terrifying reality of living on the top floor of a tall skyscraper without electricity, a generator or emergency lights hit home. My husband fell down the stairs in the Sandy blackout and sustained a severe traumatic brain injury. A long coma, total memory loss, speech loss, cognitive dysfunction and paralysis followed. The journey to normality took over three years.
What is crucial to this state of perpetual uncertainty is cultivating optimism, even humor. My eleven year old little girl and I faced the possibility that Dad might live in a hospice in blue diapers for the rest of his life, that he would be in a wheel chair, that he was permanently brain damaged and would always drool from the mouth. When Geoff first came home, he wasn’t able to hold his own body weight. I had to assist the large boned 6feet 2inch man to the bathroom. His right hand was severely disabled, and he couldn’t feed himself.
Traumatic brain injury affects vision and cognitive comprehension. Celine understood this. Daddy did not remember the past. He did not remember Celine’s childhood, or the special moments they had always shared. He had no recollection of the favorite breakfast he usually fixed her every day, or the little jokes they always cracked driving upstate to our country home. He didn’t know the difference between Eastside or Westside of Manhattan. For a scientist Dad, Daddy was pretty messed up in his brain.
Our home became the home of the brainfreeze. The comatose man who returned from the dead. Daddy died and came home. So, he is not all there, but who cares, he is still Daddy, and can sit down for dinner. Thats what matters.
The space that opens up in the face of death is a terrifying place to inhabit. But-if one occupies that space, then it must be transformed into an opportunity. A place of new possibilities. A raw openness of emotions. Declarations of frailties and of strengths. Acknowledgements of one’s feelings in the immediacy of the moment. Family dinners that are once again complete with Dad back at the table. Laying the table for three, not two. Strange feeling.
Little habits forgotten because Dad was not around that now return with a humorous twist.
“Dad needs butter on the table.”
“Dad needs his Phish Food ice cream addiction in the fridge. Yuck, but cute!”
Dad back in the kitchen making breakfast and sandwiches for lunch. The Sandwich man is back!
In the liminal space of the return, there is a momentary respite of habit. Things are in transition. How well will Dad get? Will he ever regain his memory of Celine’s childhood? Will he ever be able to drive Celine to school on those icy wintery mornings? Would he ever return to work? Will he ever be the strong, strapping Dad that he was before the coma? Hard questions with unsatisfactory answers. The past is up for interpretive renegotiation, as the coma patient cannot remember the recent past.
Entire chunks of memory were missing from Geoff’s memory. The first few days upon awakening, he couldnt recall anything at all. He didnt remember me or his child. It was a terrifying moment. This phase of memory retrieval became a painful and disorienting family enterprise.
The strange reality of post-comatose recovery was the role that eleven year old Celine played. Helping the child with her daily home work, slowly relearning to do math, science and grammar by helping the sixth grader do her homework, became an extraordinarily therapeutic environment for both father and child. Cece was helping Dad regain his cognitive capabilities swifter than if he were in a sub-acute facility.
Just as she seemed to be an anchor for him during the early phase of his trauma, Celine became central to this phase as she reconstructed Geoff’s memory through extended phone conversations in which she reminded him of small moments, and little idiosyncrasies. The mnemonic reconstruction through Father / Daughter exchange was extraordinary to watch. It was pragmatic, mutually interested, and always dynamic. Geoff was now the pupil and Celine the teacher. They were building a new mnemonic future based on her memories and his questions. Together, they journeyed across the abyss of trauma, abandonment, fear, sadness, and uncertainty, to the peaceful place of the present, a place of joy that we were all together again.
A variety of jokes emerged around the reality of Geoff’s post-comatose recovery. We called it the Brainfreeze jokes. Why couldn’t Daddy cross the road? Because he had a brainfreeze. Why couldnt Daddy be left alone? Brainfreeze. Why did Daddy look weird and skinny? Brainfreeze!!! Suddenly all of the sadness and the melancholia became transformed into a new comic state of the brainfreeze. Geoff and I agreed that being direct and honest about his state of health, and laughing through the insurmountable difficulties ahead, was our best bet at getting through this process optimistically with Celine. In a one bed-room New York apartment with zero privacy, things were a lot more manageable with the idea that the brainfreeze was a peculiar state, at once real, and comic. Laughter allowed us to believe this was temporary, that Geoff would fully recover.
Each day, the combination of walking around the city, and assisting Celine with her homework produced dramatic results. Clearly, Geoff was testing his own capabilities through the lens of the child’s work. There were problems he could not solve. Approaches that leaped back to him across the void of amnesia. Geoff’s facial muscles had frozen into a grimace of pain through the months of catatonia. He now began to transform from the withdrawn, inscrutable face of pain and inactivity, to the lively state of facial animation.
May Joseph is Professor of Social Science at the Pratt Institute, where she teaches urbanism, global studies, and visual culture. She is the founder of Harmattan Theater, which produces site-specific outdoor productions exploring the history of New York City through its architecture, design, and natural environment. Joseph is the author of Fluid New York, Nomadic Identities: The Performance of Citizenship and a coeditor (with Jennifer Natalya Fink) of Performing Hybridity. www.mayjoseph.com