Inclusive Communities Benefit Everyone

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It takes a community to heal a brain injury. Community comes in many forms, including online with people you don't personally know.

Sometimes a community, by welcoming all, may also heal people with brain injury.

National Novel Writing Month (NaNoWriMo) “believes in the transformational power of creativity. We provide the structure, community, and encouragement to help people find their voices, achieve creative goals, and build new worlds—on and off the page.”

Inclusivity is the concept of creating a system or online community that includes everyone.

NaNoWriMo, whether it intended to or not, created an inclusive community where I found a welcome. I could be myself in all my brain-injury glory, explore my returning fiction-writing talent, and turn my words into a book. By 2009, the year I learnt of NaNoWriMo, I’d worked for over a year and a half to rehabilitate my writing after my brain injury. I’d used neuromodulation devices, especially audiovisual entrainment at least weekly for nine years. I’d pursued an intensive neuroplastic treatment, brain biofeedback, for two years, and I’d undergone an additional two years of spontaneous regeneration of my brain that had been sparked by the brain biofeedback. But I had no support in my personal community to try writing a novel. I had no therapist or human resource to provide externally what cognitive abilities I was still missing. I’d been able to finish Lifeliner three years before I’d learnt of NaNoWriMo because I’d been gifted a human resource, that is, a person who worked with me, helped me understand what my editor was asking for, and kept me going. That had been before I’d completed brain biofeedback and only for Lifeliner. Due to my brain injury, I do not have the initiation, that is, the prefrontal cortex’s executive functioning that gets people to do things. I rely on external stimulation, things like handheld devices and computers. But a novel is too big a project for a computer to prompt me successfully over the time it takes to finish it. A planet full of people all talking, writing, encouraging though was just the ticket — lots and lots of external stimulation to get me in the chair to write until the novel was done.

Writing is a solitary endeavour. Professional authors will disappear into their writing nooks — an office, a coffee shop, a separate heated outdoor shed — to focus on writing their latest book. But after brain injury, solitary endeavours become almost impossible to do. Solitary endeavours require internal motivation, tough self-discipline, and long-lasting concentration. Before my brain injury, I had a writing routine, and no one but me got me to do it. I didn’t need others to tell me to go write or provide motivation. My Go button was on! Sure, one needs a sounding board for ideas or a gripe session over how slowly a scene is unfolding under the force of your pen or a community of authors to encourage and provide practical advice and instruction, but the act of writing is done by yourself — when you’re a professional author.

Not so much when you want to write for the pleasure of it.

Lots of people say they’d love to write; few do.

Enter NaNoWriMo.

They provide externally what professional authors have internally — and what my brain injury took from me, just as brain injury does from almost everyone who’s had the misfortune to suffer this catastrophe, whether it’s concussion, hemorrhage, stroke, tumours, or other reasons — the Go button. By providing what people who want to try a little creativity need to start, they provided it for brain-injured people like me, too.

I’d had an idea for a novel brewing and thumping around in my head for a while. I could feel words hidden deep inside wanting to reveal themselves to me. But with my Go button off, with no self-discipline left, with my attention span still being short, I had no ability to write them. And then a fellow church-goer told me about NaNoWriMo and encouraged me to sign up. The reason I needed NaNoWriMo didn't matter to him nor to anyone else in the NaNoWriMo community, for it had been set up to include all abilities, motivations or lack thereof.

NaNoWriMo seemed exciting, but it scared me. Before my injury, my mind never shut up. I mean: IT. NEVER. SHUT. UP. I could only go to sleep by channeling thoughts, ideas, imagination into stories that would relax me. After the injury, my mind was one vast blank landscape where nary a thought tread. Or, perhaps, occasionally a thought crept into my consciousness, often not for long periods, and only with external stimulation. My imagination was gone or maybe in hiding, I thought in 2009 as I dared to think about signing up. For years after I regained my ability to write, I tried writing fiction again. Dreck. Total, complete non-fiction-pretending-to-be-fiction dreck. So writing a novel was a challenge I wasn’t sure I was up for, on two fronts: prefrontal cortex injury and imagination that existed outside of my consciousness. I wrote an outline. I went over it with my editor. I amended it. But an outline didn’t mean I’d be able to make stuff up when it came to writing characters, scenes, chapters.

NaNoWriMo held the unfathomable possibility of finishing my first novel.

In spite of my fears and past failures, I plunged in.

My brain injury didn't make me stand out like it does in the real world. It didn't inhibit nor limit me from participating, either, like in the real world.

I never anticipated the results that being part of an inclusive community would give me.

NaNoWriMo returned to me what my injury had taken away from me in real life. People talk about social media interfering with one’s real-life social life. But when friends and family drop away after brain injury, social media and online inclusive community events like NaNoWriMo provide belonging again, not just the all-important structure to succeed. Part of NaNoWriMo is having writing buddies on the site. I’d check in to see their progress regularly. It was wonderful to see several of my writing buddies’ banners one by one turn winning purple and to read the tweets from fellow Wrimos as they hunkered down for the final dash to the 50,00-word winning line. Then I joined the winners, too.

Beyond starting and finishing a work of fiction, were the cognitive changes. My ability to write expanded in terms of time and number of words. When I’d written Lifeliner three years earlier, I’d been able to write 2,000 words in a coherent narrative, keeping it all in my head so that I didn’t ramble and I still remembered what the beginning was all about when I’d reached the end. I wrote like that weekly, not daily. Between 2007 and 2009, I’d sensed my writing energy had gradually increased to being able to write for one hour straight in a day (resting for most of the rest of the day or week). Whether I could do that day after day, as opposed to weekly or a couple of days a week with days in between to recover — that I didn’t know. After NaNoWriMo 2009, I knew I could.

It got quite difficult, and things weren’t so pleasant, but the encouragement of my fellow Wrimos, the pep talks from headquarters, and the knowledge of all eyes on me kept me going, and my brain finally decided it didn’t need to expend quite so much energy writing for an hour. Also, after I’d written 50,000 words, I cut my writing time down to 30 minutes one day, 45 most days to finish the first draft of my first novel She. NaNoWriMo had lit my writing neurons.

That’s what inclusive communities do. They welcome everybody. They restore belonging. They help people with brain injury find out what they can do. And they may help their neurons heal.

Copyright ©2019 Shireen Anne Jeejeebhoy. First published on Psychology Today. May not be reprinted or reposted without permission.