Janice and Brandon Will have always encouraged one another’s imaginations and creative energies. But they never could’ve anticipated where this would one day lead them, or the challenges it would have to lead them through.
After college, Janice set aside her career as a journalist in Detroit to freelance while raising her three sons in the suburbs. While it wasn’t easy, she found grace through creativity. After any major change or upheaval, she’d return to writing. Finally, in 2005, after her second divorce, and becoming an empty nester, she enrolled in community college writing courses—the time had come to mine her own life and imagination, rather than writing about the lives of others.
Meanwhile, in his mid-20s, Brandon began attending Columbia College in Chicago, where he found his calling. The moment he set foot into his first fiction workshop, the city beckoning from outside the window, he knew he was home. As he graduated, he became involved in a vibrant writing scene, reveling in finding his own writing community.
The two had always supported one another’s ambitions. Now, they were proud of each other, that they were both writers. They talked about the future. They knew what they each wanted, for themselves and for each other. Upon retiring—about ten years down the road—Janice planned to return to college, devote herself fully to her writing, and potentially begin teaching. Brandon was moving to New York City for graduate school. He figured he’d be there a few years, launch his career, then move back to Chicago, where his mom would move to attend school. They would live in the same neighborhood, and continue celebrating each other’s work.
Ten years later, they found themselves in lives they’d never imagined, and never would’ve chosen. Shortly after finishing graduate school, Brandon turned down a job in publishing to return home for what he initially thought would be several months, to get Janice’s health back on track before returning to New York. As anyone who has ever confronted a caregiving situation could predict, he never returned. As Parkinson’s reared its ugly head, Janice suffered a traumatic betrayal—elder financial abuse by a close family member—that meant college was no longer possible, along with many other pursuits. By the end of 2018, they were relocating to Chicago for a fresh start, but not for any of the reasons they’d once anticipated.
Becoming a care team can take over a relationship. Doctor’s appointments, dietary restrictions, support groups, everything illness all the time, your life becoming one you no longer recognize. Your house becomes a hospital, with walkers and handrails and assistive living devices. You lose track of who you are outside your worries, fears, and roles in the caretaking relationship. Years in, they got to wondering, What did we even talk about before?
For a while, Janice forgot who she was besides a Parkinson’s patient whose chronic pain from fibromyalgia zapped her energy and eroded her capacity to do the exercise needed to combat the disease’s progression, keeping her focused on little else. Brandon felt just as lost, drifting farther off course from the career he’d been working for. They felt stuck. Life had put these babies in a corner.
Then came a powerful idea. Janice’s support had been integral to Brandon completing his MFA in creative writing. He realized he could reciprocate by using his degree and experience in a way that had never occurred to him previously. Together, they could become a school of one, to bring her the education circumstances had kept from her, and help her achieve the creative expression she yearned for.
Over the course of the Covid-19 pandemic and the first stay-at-home order, concerned about their increased isolation worsening Janice’s depression and cognitive challenges, they went all in on their project. Originally, Brandon envisioned structured lesson plans. He was in denial about, and underestimating, the cognitive fluctuations that were a part of the stage of Parkinson’s they’d entered. Along with the shifting demands of a dynamic disability, they necessitated regular adaptation, adjustments to the ways in which they’d write. It was more fruitful to let “lessons” sprout simultaneously from organic questions and conversations. To shape exercises and the sharing of writing principles in response to the stories Janice was communicating.
Their initial format was fiction, but with her background in journalism, Janice never fully connected with it. Her creative mind was most sparked by reminiscing. Brandon pivoted accordingly, and off she went, producing beautiful nonfiction essays fueled by her drive. Then they learned it was all a lot more fun if Brandon did the writing exercises too, if the work was more of a conversation. They experimented and challenged one another, teacher quickly becoming student and vice versa. Through a veritable rat’s nest of journals and docs, the essays’ throughlines became evident, accumulating into a living outline, color-coded index card on their office wall, their collaborative memoir emerging. Their writing explored and embraced what they were going through, and more importantly, everything they were aside from caregiver and recipient. Though it can be hard to look at their lives before caregiving, they’ve ultimately found it comforting. Each piece of work completed is like regaining a piece of themselves, processing a part of their complex trauma and grief.
The mission has broadened as Janice and Brandon began to realize the value of forging meaningful connections with people in similar situations, and that the work they’d done together could be helpful to other care partners. Could help them remember the fullness of who they are and have been, just as it had for Janice and Brandon. Beyond their writing, through activities such as Chicago’s disability pride parade, they’ve learned more about disability justice, and now participate in activism to address ableism and its intersecting systems of oppression, for a more just, accessible, and inclusive world. They’ve become involved in the national movement for more robust care infrastructure, including an adequate safety net and well compensated jobs for care workers, Brandon through the Care Fellowship at Caring Across Generations, which grows and nurtures the advocacy and communications skills of people who give and receive care. Through these experiences, Brandon has begun to identify as disabled himself, after receiving a diagnosis of “severe ADHD” that more than explains some of the executive function challenges that have occasionally waylaid both his collaborative project with Janice, and his own writing ambitions.
With the ADHD diagnosis, we now know Janice and Brandon are each coming to this project with dopamine deficiencies, each presenting its own unique challenges. Brandon’s mind tends to leap and skitter. He fights this with lists, and breaking things down into their smaller tasks. How do you motivate someone when you have physiological motivation problems? Regimentation would be ideal, but with the realities Janice’s condition imposes, fluidity and improvisation are called for. Will Janice be able to realize her creative ambitions while navigating and embracing the ways her condition continues to transform her body and brain? Using all he’s learned in his decade of caregiving, will Brandon be able to better balance the challenges of everyday care work, and completing writing projects? Will they continue supporting each other through their limitations, and achieve their dream—to share with others how their creative connection has sustained them through devastation, to continue building community by fostering creativity as a means of resiliency?
It’s scary, but we know scary, and we’re up for it. Otherwise, we wouldn’t be writing this. Together, we can create the future that’s yet to be written.