I was diagnosed with Multiple Sclerosis in 2015, at 35, just a few months after getting married.
Walking off the mat after karate class one night, I mentioned to my instructor that my hands felt funny – I had a "pins and needles" sensation in both hands. Days later, the sensation spread to my legs – and then spread again to my abdomen. After several weeks of specialist appointments, a trip to the ER, lab tests, and MRIs, the diagnosis was in: a textbook case of Relapsing Remitting MS.
The first year and a half was relatively uneventful: I started medication therapy, had regular MRIs and check-ups with my doctor, and my physical symptoms largely resolved. I felt pretty normal. I was still doing the things I loved. I continued teaching and training in karate; I started hiking regularly. I was still writing frequently, going to readings, and experiencing some success with publishing.
I knew I was lucky. I was willing to accept that good luck. I was optimistic that it would hold.
In August 2016, I started to notice some cognitive issues: I had trouble keeping up in conversation with my friends. I had difficulty concentrating at work. I couldn't find the right words when I wanted them. I'd read about "cog fog" as a symptom of MS, but until this point I hadn't felt it myself. As soon as I did feel it, I understood that fog was an apt metaphor. It was like walking around inside a thin grey veil – everything was a little fuzzy and muted, and there was nothing I could do to change it.
Nowhere did I see this more prominently than in my writing. I'd been writing a poem a week pretty consistently for a stretch of about two years, but by that summer my productivity had decreased significantly. In the 22 weeks between August and December, I started seven poems. I struggled to condense my anxious thoughts into something specific enough to put on the page. Of the seven poems, two turned into complete pieces after months of revision. The remaining five are a tangle of notes, half-thoughts, disconnected lines. It's painful to read them now – I can see myself in those notes trying to make sense and not quite managing it.
This change was really difficult to quantify in the moment. When I first shared my concerns with my doctor, he dismissed the symptoms – you just need to reduce your stress, he told me.
But I knew that wasn't the answer – I knew my body and I knew this wasn't right. I insisted on further evaluation and we repeated the tests that had become routine. This time, though, there was something new: significant progression, the development of new lesions in areas of my brain connected to language processing. This led to new medication, new ways of thinking about my luck. The shift in treatment helped resolve some of the immediate issues, but it took months to find ways to adapt to my new brain behavior.
I was still struggling to write. I remember so clearly sitting at the table at the coffee shop telling myself to write. Nothing would come. I wondered what happened to my creative impulse. Was it consumed by a lesion? Shut down by the medication? I'd already noticed what I believed was one unanticipated side effect of the medication: I'd been a pretty vivid dreamer for most of my life, but I stopped dreaming when I started medication therapy. Or, if I was dreaming, I couldn't remember the dreams at all. I didn't know how my dream-life might be connected to my writing life, but it didn't seem too far-fetched that the medication would affect my creative impulse. I began to worry that perhaps it had disappeared forever.
Yet when introducing myself to new people, I still identified as a writer. I still talked about poetry in the present tense. I began to feel like an imposter – I wasn't engaged with the poetry world at all. I hadn't written in months. I hadn't submitted a poem or had anything published in longer than that. I hadn't even been reading poetry.
I started therapy in January 2019. One of the first things I said to my new therapist, Adam, was, "I don't know who I am if I'm not writing."
In the two and a half years between the onset of my exacerbation in 2016 and my first therapy appointment, there were about 120 weeks. I made roughly two dozen attempts to write in that time, which turned into five complete poems. The rest, again, were mostly collections of notes, half-lines, jumbles of images – like puzzles missing more pieces than they had.
I felt very much like someone had slipped into my brain while I wasn't looking – perhaps while I was sleeping – and cut out the writer in me. I stopped talking about writing as something immediate and started talking about it in the past tense. I was more lost than ever and I had the Microsoft Word evidence to prove it: in 2018, I didn't create a single new poetry file after July 13. I spent the last half of the year not even trying to write.
I know that the process of defining one's personal identity is complex. I know that we have different identities for different situations or expectations in life – I can variously describe myself as a mother, a person living with a disability, a volunteer wildlife rehabilitator, a wife. But underpinning that for decades was this idea that I am, at the root, a writer. And even after the past few years of significant changes, that still feels true.
So I'm not giving up. I'm still writing. I'm trying to put less pressure on myself to produce whole concepts and I'm trying to teach myself that any writing is a success, even if it doesn't turn into a whole poem.
I'm still learning who I am.