How To Write With The Brain Bads

“What’s going on with your brain?”

The words didn’t come. I could feel my lower lip move to the left, my upper lip trembling as I willed my diaphragm to push the trapped air out of my lungs. I pursed my lips, making a faint whistling sound as I tried to regulate my breathing by forcing the exhaled air through a smaller opening. Twin images of my sister Signe appeared on FaceTime, her worried expression swimming together then pulling apart in my blurred and double vision. She asked me again, desperate to understand, “Can you open your eyes? What happened?”

Clearly, this wasn’t working. I took a deep breath, in and out, the thin, scratchy, hospital pillowcase crackling as I rested my head and tried not to cry, alone in my hospital room.

My sister asked again and after the third or fourth try, I managed to eke out a semi-coherent “brain bads.”

That was all it took. Fifteen hours later, after a full day of driving through four states, Signe was standing beside my hospital bed, gently lifting my head and placing her favorite soft pillow underneath it.

My family calls the fall of 2023, “The Brain Bads.” When, after months of word retrieval issues, headaches, confusion, memory loss, fatigue, and finally, passing out and thinking my long deceased cat was licking my face, my doctor ordered a lumbar puncture and an MRI angiogram which showed “narrowing and beading of the arteries” in my head, showing Central Nervous System Vasculitis. Why did I see my dead cat? A TIA (transient ischemic attack) most likely occurred, or several, while my brain was inflamed and being attacked by my very misguided immune system.

During this time of new and exciting symptoms, I was trying to keep up my writing practice, and was met with an increasing amount of difficulty and frustration. I had worked so hard to develop a writing routine that worked with my disabilities that I already had from a neuro-immune disorder, so to try and incorporate all these new symptoms seemed overwhelming. So, I quit. Every time I felt the urge to write, I turned on Grey’s Anatomy or scrolled through Instagram to distract me. Every time I walked near my office, I didn’t look at the piles of stuff accumulating on my computer. Piles of insurance claims, Christmas wrapping paper, books I hadn’t been reading, an abandoned half-knitted scarf, a binder of medical studies for a pushed aside essay, all haunting me as I hurried by on my way to distract myself.

I’m a much happier and healthier person when I can write. So, how could I get back into writing when my vision is severely affected, my neck muscles can’t support my head for more than a short period of time, I can’t hold a pen, and word retrieval is still a major problem? Oh, and that awful, horrible voice won’t go away. You know the one: the one that slithers into your ear and spits out “why even write, you have nothing worth saying?”

I tried my old stand-bys – making a strong cup of tea with honey and oat milk and sitting on my exercise ball – which promptly ended with me on the floor covered in hot liquid. Obviously, I needed a new, stable place to sit. I finally settled on a soft recliner that faintly smelled of cat, but had great neck support that allowed my muscles to rest while I typed. Finding the perfect distance between me and the screen proved harder though. Too near and all the words were blurry, too far and I saw two computer screens. A couch pillow on my lap with my computer perched on top, about a foot away from my eyes, was the best solution. Other supports: Heating pad for my lower back, ice pack behind my neck, rolled up blankets under my arms for support, space heater and fan (going through menopause with hot flashes, but also living with a disease that messes with circulation is quite . . .something), and a side table with my meds, food, drinks and phone. Also, I have my IPad cued to the synonym site because word retrieval is still a bitch.

I find that I can’t write in long stretches like I used to, and some days/weeks I can’t write at all. But that’s okay. Creating may look like taking a bath, taking a nap, taking your meds, taking care of yourself. Because living with a chronic illness means that you have to tend to your needs first, and hopefully, this will open up space to create when you feel up to it. Maybe this means setting aside a half hour on the days you feel okay, and write in bed. Or carry a notebook in your bag or pull out your Notes App when you are on the bus or waiting for your kids at pick up and jot down whatever comes to mind. For me, the key was not striving for perfection, or even good writing, but just writing anything.

And about that voice? We are slowly making friends. I tell her that she can stay as long as she’s quiet when I’m writing. She pouts for a bit, but then snuggles into the heating pad, enjoys a drink of tea, and then slowly drifts off to the sounds of my fingers clicking away on the keyboard.