Lost and Found: My “words” after brain surgery

I have two birthdays. The first is the day my mother painstakingly gave birth to me 33 years ago. The second is the day my neurosurgeon gave me a second chance at life with his surgical knife, 11 years ago.

The brain surgery was a success for all intents and purposes. My vascular tumor was gone from my brain (huzzah!), I didn’t have a seizure during or after surgery (woo hoo!), and I woke up from anesthesia still able to speak both Japanese and English (yay!). Best of all, in the past 11 years, the Arteriovenous Malformation (what a mouthful!) hasn’t grown back, and I haven’t had a grand mal seizure since 2011.

However, as the months went by after my craniotomy, we began to realize that there were sacrifices made to give me a second chance at life. I had Brain Injury as result of the surgery, and was diagnosed with myriad of conditions like Executive Function Disorder, Idiosyncratic Hypersomnolence, Anxiety Disorder, Panic Disorder, Akathisia/Non-Epileptic Seizure Disorder, and probably a few others I don’t even remember.

While all of the different conditions made living, learning, and working difficult, the most emotionally devastating condition I had to grapple with was my Aphasia.

Aphasia is a disorder that results from damage to portions of the brain that are responsible for language. For most people, these areas are on the left side of the brain. Aphasia usually occurs suddenly, often following a stroke or head injury, but it may also develop slowly, as the result of a brain tumor or a progressive neurological disease. The disorder impairs the expression and understanding of language as well as reading and writing. 

What is Aphasia? from NIH

I’d been an avid reader since my toddlerhood; reading first in Japanese, and once I learned the language, in English.

Books provided me with worlds to step into when my real world was not welcoming. Playing with words was how I expressed myself, online and in countless notebooks I filled every day. I was able to convey my feelings in prose, allowing me to have an outlet and a venue for self-expression as I grappled with my developing sense of self.

Aphasia took all that way from me. I had difficulty with expressive language, which spanned to both written and spoken language. It was hard to convey what I was thinking in words. Control over words was the one attribute I prided myself on, and now I didn’t even have that left.

Executive Function Disorder made reading almost impossible, taking away my ability to concentrate for more than a few seconds at a time. My short-term memory issues meant I couldn’t remember what I’d read the day before, even if I managed to start reading a novel.

Worst of all, all of the original “worlds” I kept in my head filled with plots, back stories, and characters disappeared overnight. Where there used to be somewhere to escape to became a black void, empty and cold.

I stopped communicating more than the bare minimum. I stopped reading. I stopped writing. I gave up my life-long dream of becoming a published author.

I’d lost my words.

The only thing I had as my weapon against the world to express myself and protect myself.

If I couldn’t even write up a Facebook Post, there was no way I could write and publish a book.

With deep disappointment tucked in my heart, I graduated with my bachelor’s and master’s degrees in Special Education. Despite getting my degrees, I gave up my dream of becoming a Special Education teacher, and moved to New York City.

Half a year of job-searching later, I miraculously landed a job as an IT Helpdesk Engineer. Now with one foot in a new career trajectory in the world of tech, I forgot about my broken dream. I devoted myself to working in IT, learning everything I could as I transitioned from role to role, finally ending up at a tech startup.

Along the way, I began reading again as I managed to control my executive dysfunction, and my short-term memory improved. I began writing, first via Tweets, and then blog posts. I thought of every tweet, every blog, and every tutorial as rehabilitation, hoping that one day, when my lost worlds returned to me, I’d be ready to put them down to paper.

That day hasn’t come yet, but against all odds, I managed to somehow find myself in a writing role.

I’d found my words again.

I became a Technical Writer, paid to write words. My writing helps to deconstruct elusive concepts. With enough encouragement from my readers and clients, I was able to hold pride in my words again.

I don’t know if I’ll ever regain the level of control over my prose I had before my brain surgery. Sometimes, I wonder what would have happened if I never had my vascular malformations, and didn’t require surgery. But at the same time, I believe my experiences shaped who I am, and provided me the opportunities I’ve had the honor of pursuing over the past decade.

The kind of writing I do is very different from what I envisioned myself to be doing as a bookworm child dreaming of publishing her own book. I thought I’d be writing fantasy, fiction, or poetry.

Instead, I write documentation and tutorials. I write about cloud computing and JavaScript and load balancers.

This year, I had the privilege of writing and publishing my first book: AWS for Non-Engineers.

It’s definitely not what I thought I’d be publishing, but I am very proud of the fact that I accomplished a life-long goal that I thought was impossible after my brain injury.

Maybe in the next few decades, my “inner worlds” will come back to me, and I’ll be able to write a fiction book. But until then, I’ll continue living in the “real world” and write documentation and tutorials, thankful that I’m able to still work with words, even if it’s not in ways I’d anticipated as a child.

Growing up, words were very important to me. Today, words are still important to me, and perhaps even more so because I lost them once. Every day, I’m baffled that I was able to fulfill my dream of writing as a profession.

Today marks my entry into 12 years post-surgery, and 12 years as aphasic Hiroko. And I can’t wait to see what’s coming up next.

Anyways, enough sap. Go buy my book ?

Just kidding. But please go take a look because I’m very proud of finishing the manuscript less than a month before I gave birth to a real-life human.

Hiroko Nishimura
AWS Community Hero. Special Education teacher turned IT Engineer turned Technical Writer. Author "AWS for Non-Engineers" (Manning Publications). Technical Instructor "Introduction to AWS for Non-Engineers" (LinkedIn Learning).

5 thoughts on “Lost and Found: My “words” after brain surgery”

  1. Congratulations! Perhaps I’m the first to comment? While I’ve not read the book yet – and may end up delegating such work, if I ever need to know AWS, it’s first on my list. Just as important, congratulations on “birth to a real-life human” which sounds like Motherhood. I’ve enjoyed reading your post / newsletter.

    I’m a father, and I just put my daughter to bed. I’ve been “Mr. Mom” to her, so generally she prefers that I read her a bed time story and put her to bed. That wasn’t planned but that’s another story.

    She’s just old enough for me to start to read her something long, like Harry Potter. Interactions with good books, and better yet people (especially via our church / kids ministry), will be important to her social development.

    The best revenge is living well. Enjoy your revenge against that tumor!

  2. I also lost my capability to read and write after a long Covid fight 2 years ago. I used to write well as a sports writer for major Japanese magazine so it was kind of heart braking to accept by new reality. But your article gave me hope. Thank you.

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