Starting Again After a Brain Injury
The Sunday Review | Opinion | By JANE ROSETT | Published: October 8, 2011
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 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.
More than four and a half years post brain damage, memories still do not serenely knit back together as in those nifty “How the Brain Heals” neurology cartoons. Shards of memories pierce my consciousness before fragmenting and melting into fresh half-syllables. Some memories hover in shadows. Others gouge and flee.
Initially, memories came back in my dreams and later through my writing and photography. It’s the images, not the words, that come back to me.
My friend Andrée, a physician who treats patients with traumatic brain injuries (though she isn’t one of my doctors), offers me the clinical word for what I am describing: diaschisis, sometimes said to be Greek for “shocked throughout.” She explains that neuroplasticity lets me bypass damaged parts of my brain and forge new neuronal communication routes so I can access, or remember, sensory information that I received as a word, from another place from within my brain and in an entirely different format. Like an image. “So for example, if your brain receives the word ‘love,’ it can recall the word ‘love’ as an image of a heart,” Andrée explains.
Thank you, neuroplasticity!
My cognitive problems are exacerbated by chronic physical pain from the damage to my nervous system. Glass-shard-wielding fire ants shred my body’s meridians. Acupuncture helps a lot. And so does ice. And so does not talking about it, as talking about my pain only makes it worse. As do hectic, high-sensory situations, mean people and the electric buzz of lights and computers.
I am very lucky that my neurologist sent me to Spaulding Rehabilitation Hospital’s brain injury program last year. The Defense Department says that, between 2000 and 2010, more than 200,000 service members suffered traumatic brain injuries. Domestic emergency rooms report approximately 1.7 million T.B.I. diagnoses (and 52,000 T.B.I.-related deaths) annually. But very few people with brain injuries receive any sort of treatment beyond acute care. It is a big deal to be somewhere where nobody will laugh at you for rediscovering gum at age 50.
My physical therapist helps me relearn how to put one foot in front of the other without corkscrew-torquing my spine.
My occupational therapist helps me relearn basics of daily life, like what a kitchen pantry is.
I yearn to grasp the practical mechanics of how my specific broken brain ticks, and what ticks it off, how it heals by itself and what I can do to help.
I believe that the No. 1 reason I’m alive today is that I never stopped working. My work grounds me. I spend much of my time writing; I am slowly learning to write with my right hand, to conserve dexterity in my dominant left. This process helps me to downshift my perpetually cycling brain.
As I struggle to remain connected to the threads of my life, I follow every thread when I write. One thread leads to another, leads to 4 threads, leads to 12 more. And before I know it, I’ve written 543 pages.
Mapping my broken brain includes photographing from my adapted pedal kayak on the water outside the hospital. I navigate the series of locks that separate the Charles River from Boston Harbor. It’s an area of stillness and abstractions, where distinctions — between river and bay, between confining diagnoses and liberating health — dissolve.
While nothing can prepare anyone for a traumatic brain injury, 25 years of AIDS and disability activism turned out to be excellent boot camp for navigating these last five years as a patient within an alienating system. Some hallmarks of AIDS advocacy — the importance of first-person perspectives and the sense of community among H.I.V.-positive people — don’t apply to brain injury patients, who are too often intimidated about speaking up on our own behalf. Attempts to engage with our new worlds through work and creative expression, even simple questions about our health care, are interpreted as symptoms to be treated, sometimes with inebriating drugs. And traumatic brain injuries destroy connections between and within people — so how are we to build a self-empowering community?
But my AIDS and disability activism taught me how to fight for my rights. I might not recognize my own sister, but I know my Americans With Disabilities Act, and the terms “reasonable accommodation” and “least restrictive environment” are hard-wired into my brain. Fighting for my rights requires me to learn self-compassion. And compassion trumps stigma.
I broke my leg last year, and it took me and my physical therapist a week to realize it, because my broken leg was unremarkable compared to my chronic neuropathic pain. Then, it was spooky how much more attention my cast and crutches elicited from both strangers and doctors than my broken brain does, even though my invisible cerebral disabilities cause more pain.
It is no wonder suicide remains a significant cause of death among people with a traumatic brain injury diagnosis. My speech language pathologist tells me I am a “survivor.” I tell him I do not feel like a survivor, I feel like someone who is still fighting for her life. I am afraid of what will happen to me. I don’t say that because I’m suicidal, but because I can’t keep living the way I am now.
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.
A version of this op-ed appeared in print on October 9, 2011, on page SR9 of the New York edition with the headline:
Starting Again After a Brain Injury
© 2011 The New York Times Company
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