Lost and Found, 13 years later?

I may have found a really important thing I lost 13 years ago.

Thirteen years ago, I had a craniotomy (brain surgery) to remove vascular (brain vessel) tumors from my brain. In the process, I gained a future, but also lost a lot.

For one thing, I lost around 1/8th of my brain from the process of cutting the vascular tumors out of my brain. It was later explained to us that it’s just an unfortunate byproduct of these surgeries because any time there’s pressure placed on the brain for any reason (in this case, removing the overgrown blood vessels), areas around it may be damaged by the pressure.

Photograph of me few days after brain surgery and a cross-section of my head.

So when you look at brain scans of my brain, there is a fairly large black area in my left frontal lobe. I don’t think it necessarily means that there’s “nothing there,” but that there’s been pretty substantial damage to that area (I believe it means there’s “high density” there). The frontal lobe houses your executive function, logic, deep thinking… A lot of pretty important things as a human, and especially as an individual. It’s the most evolved part of your brain, and I often wondered before my surgery whether I’m really “me” if my frontal lobe is damaged and I lose my memory or don a new personality.

After my surgery, my short term memory was shot, and my executive function was in the dumpster. I couldn’t even focus long enough to watch a 3 minute music video of a song I liked, much less read papers or write essays. I would find myself reading the same sentence over and over and over again and still not comprehend a single thing.

Anything could derail me from focusing, including an extra tab at the bottom of the screen or a missing pen. I had to write everything down in my planners and calendars and set calendar reminders for any event and task so I would be able to complete them. If I didn’t “take them out” of my brain, I’d either spend the next foreseeable future worrying about forgetting to do it and not get anything done, or just completely forget about it.

Over the years, many aspects of my brain injury symptoms improved or became less apparent as I found ways to accommodate for the challenges. If I can’t read via text, then I’ll listen via audiobooks. If I can’t remember things, I’ll be very meticulous about taking notes and putting every event in my Google Calendar. If I can’t trust myself to manage something, like my finances, then I’ll set up systems so I can set it and forget it. I’ve become quite successful at managing the little brain mishaps, and have been able to even harness the hyper-focus that comes with my executive dysfunction disorder to write and publish a book and create multiple courses.

However, there was one very important thing I lost 13 years ago, that I had given up on ever regaining. That something was my rich inner world. I don’t really know if there’s a word for it, but quick Googling shows me that many people also house multiple worlds and story lines that they develop and “visit” in their minds.

I had quite a few of them at all times for as long as I remember, and would “enter” a world in a bout of daydreaming or before I went off to bed to further develop the plot or story. I used to write many short stories and poems that fed off these worlds, and they brought me great joy to cultivate.

I loved reading since I was a toddler, and ever since I could recall, I have wanted to be a writer. And so I wrote, wrote, and wrote.

I’m sure most of them were not very good, but I was also a middle schooler. As I got older, I would publish stories and fan fiction online, and would find a community of fellow readers and writers to enjoy each other’s stories.

Up until the day of my surgery, I wrote. I wrote about my feelings, anxieties, hopes, and dreams. I visited my worlds, leaving my “real world” problems for a few hours and entering a world filled with a different set of problems that I would face bravely as the “hero” of the story. I felt powerless in this world with my failing body and brain, but in my inner worlds, I could be and do whatever I wanted to do.

I realized something was wrong once the drugs started wearing off and I began regaining a semblance of normalcy after my brain surgery. The first few days were battles to stay alive, learn how to eat, and hope that before they discharged me, my body will remember how to defecate. But once I was home and lounging on the couch, propped up by 4 pillows on each side (because I wasn’t capable of holding myself up), I realized that something was very wrong. Where I used to have countless doors to visit my “worlds,” there was just darkness. Nothing there.

Looking back, the darkness seems to mirror the black area in my brain scans. Where I could always count on to have different plot lines to develop and characters to build, there was nothing. Where I used to retreat to at the end of the day was no longer there. And while many aspects of my disabilities lessened as time went on, and I now live my day-to-day mostly having forgotten the fact that I am missing almost an eight of my brain, this pitch black space has never repopulated.

But few days ago, as I was lying in bed recovering from norovirus, I realized that my brain was thinking up of multiple stories and plots. I can’t even remember what they were, so I don’t have anything to share (I’m sure they weren’t much good anyways, since I remember asking myself I should get up and write them down, and I decided not to). But it was like a shard of light suddenly cracking through the darkness, whispering that I may be able to start creating fictional worlds again.

Writing a fiction book and publishing one has always been my dream, but I’d long given up on it since I lost my worlds to darkness 13 years ago. To cut the loss, I decided that I’m going to accept that I can only write nonfiction or technical books, and took the chance to publish a book about Amazon Web Services few years back (any book is good book!). But this event shed hope for the first time in over a decade that maybe it’s not over. Maybe my brain still has ways to go in terms of healing, even if it’s been so long since the injury.

I don’t know if it’s been the lifestyle changes I’ve been initiating the past month or two (long trip, decluttering, thinking about the future, looking for ways to make my brain happy), or if it’s just pure chance, or perhaps byproduct of the norovirus (maybe it reached my brain?), or maybe starting this newsletter and beginning to write with focus, but I’ve been slowly thinking about the possibilities this opens for me and my goals. It’s only been a flicker of light (I haven’t experienced it since that day yet), but from complete darkness to a flicker is a leap of excitement I can hardly contain.

I don’t know what 2025 and rest of this decade is going to bring for me, but it seems like I’m going to entering my lunar year (yayyyy snake!) with some exciting developments in my life and brain! I guess the brain really is plastic!