Writing With and Through Pain

It’s an odd thing to continue to show up at the page when the brain and the fingers you bring to the keyboard have changed. Before the daily pain and head-fog of rheumatoid disease, I could sit at my computer and dive headlong into text for hours. Like many writers, I had a quasi-religious attachment to the feeling of jet-fuel production, the clear writing process of my twenties: the silence I required, the brand of pen I chose when I wrote long-hand, those hours when I would sit and pour out words and forget to breathe.

Then, I thought that my steel-trap focus made for good writing, but I confess that I’m not sure what “good writing” means anymore. For example, what happens when the fogged writing you thought was sub-par results in your most popular book?

Nine years ago, I began to experience the carnival of symptoms heralding the arrival of a few autoimmune diseases. In addition to hormonal imbalances and pain, a “brain fog” descended. This cognitive impairment to memory and concentration is shared by people with Multiple Sclerosis, Myalgic Encephalomyelitis (chronic fatigue syndrome), and a bunch of other conditions, and the cause may vary with the condition. It’s unclear what causes the fog, though in many cases, disrupted sleep is part of the culprit. Plus, pain makes it harder to concentrate.

Today I am tired—despite a full night’s sleep—merely because I had a busy workday yesterday. I’m actually hungover, in a sense, from standing upright and talking between 9:00 am and 5:00 pm. Before I got sick, I would have declared this day a rare lost cause. But this is the new normal. Now, even the magic of caffeine doesn’t allow me to smash through the pages like I used to. As my body and mind changed, I feared that I would become unhinged from text itself, and from the thinking and insight that text provides. In a way, that did happen. Over the past decade, I have had to remake my contract with sentences and with every step of the writing process. The good thing is that there’s plasticity in that relationship, as long as I am patient.

I don’t know a lot about neurology, but here’s what it feels like: there’s a higher register, buzzing, logical, and mathematical, in which I could often write when I was at full energy. And then there’s a lower tone, slower and quieter—my existence these days. The music of the words sounds completely different at this lower register, producing different voices and different shapes, but it still resonates. It requires me to intuit more, to pay much more attention to non-verbal senses and emotional structures and to try to put them into words, rather than to follow the intellectual string of words themselves. Although our diseases are very different, I have felt what Floyd Skloot describes in his essay “Thinking with a Damaged Brain,” in which he traces the ways his thought processes have been altered by the aftermath of a virus that ravaged his attention and memory:

I must be willing to write slowly, to skip or leave blank spaces where I cannot find words that I seek, compose in fragments and without an overall ordering principle or imposed form. I explore and make discoveries in my writing now, never quite sure where I am going but willing to let things ride and discover later how they all fit together.

I do work more slowly. Of necessity, I place more faith in Tomorrow Me. When I stop writing, daunted by a place where I’m stuck, my energy plummets and I hand it off, knowing I’ll pick up the challenge on the next session. Somehow being able to do less at one stretch has made me focus on the bigger picture, on the truth that I can give myself assignments and they will slowly get done. I don’t expect to sit down and have a series of revelations anymore during a three-hour writing session. I get stuck, and I stop. And somehow, slowly, the knots get untied over a series of days.

“Will another sentence come? I wait for it like a birdwatcher, like a lover checking for a reply to a text message. Anything? Anyone?”

Sometimes on a good day, I still recognize traces of my former writing style—giddy, bubbly, a tangential rococo. The hyper-focus I had in my earlier years often produced intricate, subordinate-claused, weighty sentences. Today, through the curtain of exhaustion and pain, those intricate sentences come farther and fewer between. I miss the feeling of one sentence rushing right into the next, the ability to think and write in paragraphs. Now my writing is strung with pauses. Each gap between the punctuation mark and the capital letter of the next sentence is an invitation to a mini crisis of faith. Will another sentence come? I wait for it like a birdwatcher, like a lover checking for a reply to a text message. Anything? Anyone?

I remember when I could live inside a document for hours. But I also remember that the younger me was so willing to erase herself and doubt her conclusions. A sheaf of paragraphs could lead, somehow, to pages of qualifications until I’d barely said anything at all. My previous writing process felt like good writing because it was the first process I knew. It made me feel smart and productive because the paragraphs and pages piled up. I’ve always been a strong advocate and practitioner of what Dorothy Allison called her “accordion method” of writing, in which great huge drafts of text were generated and then squeezed together, then expanded, then condensed.

But many of the pieces in my collection Pain Woman Takes Your Keys, and Other Essays from a Nervous System were not written that way at all. The dim semaphore through which my sentences arrive today leads to a strange by-product: I have less energy to worry about all the ways in which I might be wrong (though maybe age and confidence have also helped). In plodding along slowly, my voice has become clearer, at least in my own head. This slow writing forces me to make each word count. A simple direct sentence requires me to say what I actually mean without apology or qualification. Instead of being cut like snowflakes from a massive sheet of text, the essays were written slowly, one sentence at a time, and thus they are tighter, more considered, requiring less “squeezing.” There is less there—and less there to cut.

Pain Woman is made up of experimental essays in wildly different voices, a kind of playing dress-up. The approach emerged from the realization that my original writing voice was too hard to climb into after I got sick. My own experience in my body and mind these days is one of unpredictability; I swing wildly between focus and exhaustion, good days and “ehhh,” so my writing experiments followed my embodied and wildly variable physical existence. I once felt I could freely choose from a range of voices, each a version of “me,” and that I could sit at the keyboard and choose how to channel the jangling energy that made paragraphs. Some days now, it’s like I open the toolbox of my head, and there’s just one tool, and it’s a pink highlighter when I wanted a nice dark felt-tip. After raging against the disappearance of my favorite tools, I’ve had to pick up what’s available and see what is possible with that one terrible pink highlighter. I wrote the essays to try to understand what pain had done to my voice and whether I still had options. I discovered that I do, though many of my new voices aren’t ones I’d ever thought about writing in before.

Four books have been printed with my name on the covers since I received my diagnosis nine years ago. But I am not fighting a brave battle against pain, nor am I winning. Instead it feels like I allow pain and brain fog all the space they want, and then I work around those obstacles, writing a few words at a time. I look into the fog and remind myself not to be scared of the pause. Out of this silent fog, another thought will emerge. Eventually. The key is to not panic in the face of this void. If I relax, and pick sentence by sentence through how things feel, paragraphs still come. One thing I know about pain is that it is never constant. It changes shape again and again, so the space around the pain shifts too.

My writing self is a series of agreements and tricks accumulated into a storehouse to navigate this strange set of conditions. What I want to say is changed by the environment of the body that produces the text. I have made a commitment to not hate myself when my writing process becomes unmoored. I have had to trust that my writing process is there, morphing into a different form—just as it did during graduate school, just as it did when I became a mother. I decided not to write today, and because of that permission, I am writing just a tiny bit. I live each day at the edge of not writing, and by that agreement, a lot of writing collects itself.