Roadmaps: Finding Balance Between Work And Self-Care

Dear Rebekah and Hannah,

For the past six years I have been grappling with two concurrent neurological disorders that cause constant and sometimes debilitating pain, brain fog, fatigue, balance and spatial perception issues, vision disturbances, etc. One of the great challenges of adapting to this new life is that I am a writer, and for many years before becoming chronically ill, I was somewhat of a workaholic. I could get in the zone and write for 10, even 12 hours without a break. I published a lot. I also hustled a lot.  

Now, on a good day, I can’t be upright for longer than an hour. The brain fog often makes me unable to find words. I need a lot of rest. As a result, I no longer have the advantage of entering the old flow zone where I could finish project after project, nor the bandwidth to hustle.  

Writing is deeply ingrained in my being, my identity, my self-esteem, so I can’t just give it up. I’m trying to establish new ways of working in this new brain/body of mine. I’m also trying to forgive myself on days that I just can’t do anything at all. But, inevitably, by day 4 or 5 of a flare, the depression comes creeping. Writing gives me a sense of purpose. If you can share any advice for me, both for balancing work and self-care, and for the psychological elements, I would be infinitely grateful. 

Yours,
No Bandwidth to Hustle 

Dear No Bandwidth, 

One summer, a chronically ill friend and I worked on a short story collection together. We were on a roll of creating slightly wacky, slightly off-kilter protagonists who all encountered various narrative oddities. That is, we were on a roll until my friend started experiencing copious amounts of pain in his hands, and couldn’t type or write for any length of time without hurting. “You could try dictation?” I offered at the time, knowing how much he wanted to be able to get back to writing, while also knowing that allowing my own audible voice to preach the sacred space I enter while writing wasn’t something I thought keenly about doing.  

One of my least favorite parts about having a progressive disability is that I have no idea if I’ll be able to write for the rest of my life in the same way I do now. I don’t know what will happen, for example, when I’m no longer able to move my hand across a keyboard, or my fingers aren’t strong enough to push down on keys. Within just the past few months, for example, I have had to look squarely in the eye of the fact that I am no longer able to move my right arm on and off my armrest like I once could. This specific act is a minor loss, but what if this is a sign of things to come? Most likely, there is no “what if?” Of course, it is a sign of things to come. Of course, it also isn’t.  

Storytelling is an act of survival. Putting words to our own embodied truths — especially when, for so long, in so many ways, “our” stories have been told for us — is nothing short of revolutionary. As a writer, this is of course nothing new to you. It is also the deep knowing of this truth which makes not being able to physically write, or the threat of losing the ability to write, that much more terrifying. Of course, this fear of losing abilities due to our bodies changing over time isn’t applicable solely to writers — it’s a widely understood disabled experience, and, really, a human one.  

And yet, I’m typing most of this letter to you now on my phone, in a Google Doc, a technique I’ve practiced since college, when it became clear to me that pulling out a notebook and pencil to jot down my thoughts, something many a writing professor encouraged, was never going to work for me. I don’t know if I’ll always be able to type on my phone like this, but I do know this is not the only way I write. I’m also writing when I go on walks down the trail by my apartment, admiring the wildflowers and birdsong, cataloging lines as they appear in my mind with each new turn of my wheels. I’m writing when I cradle ideas during my morning shower, trying to negotiate my fatigue with my caregiver’s energy. I’m writing when I pray. I’m writing as I move my body and mind through the world around me.  

When my friend’s hands were filled with pain that summer, his body was telling him a story, one we both had to listen to and unpack. He tried dictation, and then we tried taking a break from our marathon. This ended up working, until he felt he could type again without pain. But it might not work in the future, the same way typing on my phone might not always work for me. 

Being receptive to the stories our bodies are telling us allows us to see different ways we can tell stories, different ways we can create, and different ways we can live. It can also encourage us to tell different stories about the persistent yet false correlation between production and self-worth. What’s most difficult is when our bodies suddenly begin telling new stories entirely. All we can do is sit with them and listen.  

Love,
Hannah 

Dear No Bandwidth, 

The more I read your letter, the more I found myself thinking about the years I spent teaching high school English. My level of “production” had never been higher. I stayed up into the wee hours, got up in the wee hours, hunched over my laptop until my shoulders forgot how to relax and release. Piles of graded papers returned, report cards written and submitted, tests handed out and graded, lessons planned and executed — check, check, check! I was shocked by how good it felt — how validated I felt by my piles of production. It was a way of being in the world that made me feel immediately valuable. 

It was also unsustainable. I wanted to keep working — the same way, the same speed — but my body became a brick wall. I threw myself against it over and over, as if one of these times I’d break through and make it to the other side where everything felt familiar and full of purpose.  

While I was in that job, I attended a drawing workshop our school’s art teacher hosted. He gave us one minute to draw a little sketch of something, a castle or a cat or a self-portrait. Then we were tasked with drawing the same sketch in 15 seconds. Then 10. Then five. It was an exercise to get us out of our heads and recognize the extraordinary bits that might burst out of shifting parameters.  

It reminded me of the blackout poems I’d do with my students. Teenagers who didn’t see themselves as poets were able to pull together a string of words that felt profound, not by working on a limitless white page, but by working within the narrow parameters of a single page of already printed text. They could only choose from the words they were already given, in the order they were already written, and yet, so many of them discovered something explosive and new there. 

It reminds me of my body. A body that can’t keep up indefinitely, that pulls me back with sharp pain and dense fatigue. We are primed to consider limitation as only loss. Confinement. Unwanted. And it can be. After three years, I left the high school teaching job. I still miss it, still find myself wondering if the work I do now is as valuable as the work I did before, still feel a hole in my identity where I used to say, “I’m a teacher!” And I hear a heavy loss as you describe that sense of purpose and identity your previous writing gave you. I don’t want to minimize a breath of that.  

When we look at a visual art style or poem or piece of music, it’s easier to see the ways limitations can be the precise recipe that leads to something new, original, maybe even astonishing. The limitation is the prompt. It hems us in and waits for us to discover the unexpected. Practically speaking, I am very curious what kinds of poems your very specific body wants to tell. Or what stories you can compose in 100 words, 50 words, 10 words or less. Or what essays you might build on, one sentence a day. Miss a day? The white space is part of the story.  

Instead of trying to hurl our bodies back into the familiar, validating, linear path where speed + volume = value, I wonder what it would feel like for you to explore alternate dimensions in the space you now find yourself. What if the new limitations became a prompt? Not as a concession or a lesser version of what you wrote before, but as an invigorating challenge to your craft. What if you were allowed to grieve the loss of those wide-open spaces where you used to create, and also be doggedly curious about the bits that might blossom within a new set of fences?  

Love, 
Rebekah

Roadmaps authors Rebekah Taussig and Hannah Soyer don’t claim to know it all, but they have been traveling the disability road for quite some time and would love to share their experience with you. To submit your question, please send it to messyroadmaps@gmail.com.