The Wall of Silent Words

For years now - four years now - I have been wanting to jump back in to the joy of sharing my story. I miss it. I miss the rolling of the words through my brain, scrambling off my tongue and onto the page. I miss humbly searching for the right order of things and the satisfying breath as language falls into place. I haven't had that in a long long time.

In 2021 I shifted directions for a lot of reasons. My health was not great, but at the same time, that was what I was writing about. Adversity had led to advocacy, but the downward slope of my health and the upward pace of posting daily on social media had started affecting me harshly.

"What's the one thing that you can think of that you're doing that's causing these episodes? What's causing your migraines to get worse?" My neurologist was an older man with a perpetually furrowed brow and a kindly twinkle in his eye, always looking at me as if I already knew the answer to a math problem he had asked.

I had seen him quite a few times in the last 3 months since July that year, and each time I had the exact same conversation with him.

"I don't remember taking these photos." That's how it would start. I would present my phone to him, panicked, showing him pictures of myself and my son.

He would sit there calmly and lean in, taking a deep breath. "...And then the migraine hit hours or days later?.." I would tell him when the latest migraine hit.

"And I couldn't speak and it was horrible..."

"And was it hemiplaegic this time?" He would be looking at his desk at this point as if this sounded very familiar. "Let's see what they treated you with in the ER... Ok...." He scanned his computer screen and then took a deep breath and leaned over the desk, his full attention on me. He asked me to pull my seat close.

"Kat. Imagine your brain is like a laptop. Everything is working fine. Then this kind of horrible migraine attack comes and boom. It disrupts the laptop's memory. Now, it doesn't mean the programs can't run, it means they can't maybe save things internally. They need external memory until they're fixed. One of those sticks or something. Now, you don't have a stick. So the brain is going to throw out those memories and things that you were doing while you were hit with a migraine, or in other cases a stroke let's say. So...It's gone. For now. In some cases memories could come back. But if it's gone, it's gone. It's ok. But you're better than a laptop. The brain is resilient. It's going to heal. But what we need to figure out is why this is happening and how to stop it. Because...I've had this conversation with you before. How often are you having these big ones?"

"At least once a week, maybe 2-3 times."

He sat back, then changed course and leaned in again. "Each one of these episodes that you're having can take up to a year for your brain to heal."

I sat there blankly. I couldn't fathom the math, couldn't begin to calculate what this meant to my life.

"So...What's the one thing that you can think of that you're doing that's causing these episodes? What's causing your migraines to get worse?"

He stared hard at me and we went over everything again. Food, environment, sleep habits, menstrual cycles.

I was baffled. I was on a low-histamine anti-inflammatory diet at the time to try and limit my migraines. I didn't nap, I was trying to be as active as I was physically able, but in terms of screen-time I was hardly on my laptop and didn't watch that much TV? There was the obvious stress of being a mom in a pandemic, but what else could I do?

"Hold on - are you kidding me about screen-time?" My husband laughed later as I recapped the meeting and reported a new higher dose of medication in the car. "How much time are you on your phone? Specifically Instagram? Look at your usage."

Well of course - the phone! Of course. A sense of embarrassed dread welled up in my gut as I hunted for the app usage and realized my screen usage in general was out of control. I started to cry.

16 hours a day on my phone.

That's on Instagram, editing, taking photos...but mostly writing.

And we're not talking batch content creation. We're talking struggling to write one post.

It was all making sense now.

Somehow my ability to write had shrivelled up, yet expanded vastly in terms of how much time it took to accomplish a simple task. A short sentence would take hours for me to write. It was agony for me to write what was in my head. I couldn't find the words, identify them, or get them out. Of course I seemed to be having migraines almost daily - I was even sharing this with my community - and this issue with writing was happening daily but I just didn't connect the dots.

Off screen, I would suddenly lose the ability to speak, and soon after the right side of my face would melt softly downward heralding the migraine setting in. A day or so before an episode I would lose the ability to understand computer programs -even something that I'd been using for over 20 years, or I'd completely forget how to write an email. When a migraine would hit and texts or calls came in, I would stare blankly at my phone unable to process what to do next. I would shove the phone at my husband, face solemn and drooping, my words gone, tears streaming.

"Yeah. I see. Someone is texting you. It's ok. They will wait. It will all wait."

Transient aphasia.

It accompanied these disabling episodes, landed me in the hospital several times, lasted as long as it wanted to last -sometimes days - before the migraine would hit. At this stifling intensity it lasted years, gradually tamed by medications and meditation and compassion. It still comes, though now only for a few hours, the harbinger to each migraine, but I've learned to lean deeply into it. At times I can't read, or write, or speak. My perspective? It's all just a sign to stop. And then I simply stop.

And when I need to stop, life continues. It blooms in the quiet. I hear my breath again.

I remember that life is always in motion even when I am not.

I remember that as long as I am waking up, I am showing up.

I remember the wall of silent words and I am grateful that I am speaking, even if I am not posting.

I remember my neurologist's words: "...the brain is resilient. It's going to heal..."

I slowly climb out.

I work.

I heal.

Sometimes it takes 4 years to find the words again, but I heal.

And one day, the words start to trickle again.

...It's ok. They will wait. They will all wait...

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