Somewhere in the twilight, while fighting my demons, a tiny idea sparked to life—an idea to make something good out of the worst. So here I am… explaining WHY I’m even starting this blog-writing thingy, and HOW I’ll try to juggle it. Interested?
Huh. OK. So it looks like I am doing it! I’m starting a blog… Well, what should I even say?
To be straight, of course I have a basic idea of why I’m even starting this blog and what I want to say. Otherwise, I wouldn’t be writing these lines! Right!? But that’s actually all I have right now. A rough idea—why, and vaguely how. So, bear with me for a second. Let’s start with the WHY, which is clearer to me.
First, to anyone who’s reading this website and asking themselves, “Who is this nobody anyway, and why should I even care?”—a little context would probably help at this point, right? So, in a nutshell… you see… I have this thing… they say it’s a tumor… it’s the size of a grape… and it’s in my head. Well, the doctors and the internet in general say, “It’s not such a big deal. Suck it up and you’ll be fine!” But—it’s very serious to me. From my perspective, this thing in my head feels like an extremely big deal. After all, it’s a tumor. A freaking tumor! And not such a small one either!
But basically, because it’s technically not a brain tumor, nor malignant cancer, nor is it growing fast, I’m not accepted in the big league. I’m not the right fit for the oncology patients’ club, not the right fit for the brain tumor patients’ society… and not 100% healthy either. I probably could have made peace with just this tumor-bastard thing in my head, but not being popular... NO! I will not accept this so lightly. So—war it is!
OK, joke aside. This tumor is called Vestibular Schwannoma (VS). Or, more widely known to the general public, as acoustic neuroma. You’ve never heard of it? Well, I hadn’t either. At least not until late December of 2024, after I received my MRI images—at that time, without any written explanation (it was the Christmas/New Year holiday season). All I could do was search the web for answers by myself. And believe me, that was not one of those fun learning experiences. At that time, not knowing what the abnormal mass in my head was—just knowing all the possibilities what it could be—well, let’s just say I probably wouldn’t have been more scared seeing a ghost.
My world was shattered. In my mind, my life was cut in half right before my eyes. Basically, my worst Christmas and New Year’s holidays ever. I will never again say “It can’t get any worse.”, but by my standards, that was the time I hit the lowest.
...OK, so, not to be too long—fast forward to the present day: June 20th, 2025. I’m still alive. I still have this thing in my head. I’m still sometimes scared. But I’ve managed to find mental strength to control and maintain my mental stability—most of the time. But not always.
Right now, I still have way more questions than answers. But in the not-so-distant future, I’ll have to make a decision about what we—my doctors and I—will do about my “little head invader” (which is actually not so little… and this paraphrasing somehow just sounds wrong, so please forgive me). When I think about that, I get chills. I’m certainly not qualified to make such decisions that could have potentially life-altering consequences. But the doctors, if I summarize, basically say:
“You look like a smart guy, right? Well, tell us—should we open up your head with a saw and poke around a little bit, or should we just point our fancy gamma-radiation gun at your head and do a few pew-pews and see what happens? Ha! What do you want?”
No no no no, I’m not that smart. Actually, I’m quite a dumb-dumb when it comes to neurology, neuroscience, and all things related to this field. And if I trust you with my little secret—I’m still just a 33-year-old child. So what are you doing, doctors?! You’re putting a loaded gun in the hands of a child—really?!?! …but yes, after all, as much as I’m NOT qualified, I’m the last link in this very important and delicate decision-making process. Which is totally the right way those things are supposed to work, but I just have so much trouble wrapping my head around it. It’s a hard pill to swallow.
Sorry about that. It looks like I had to “vent” a little bit. But now you at least have some context… well, probably just a poor 5% of the story, and I’d bet even that’s an overestimation from my side. But it’ll have to do for now.
OK! Let’s tackle the WHY question. This one is quite clear to me. Although it didn’t come to me in a dream or anything like that. Sadly, nor was it something Biblical. It just somehow crept in over time while I was struggling with this problem of mine (and mostly the problems arising from or because of this tumor problem) and ignited a small desire that grew and grew—that all those struggles I had, and am still having, shouldn’t go to waste.
I’m a strong believer that if you have a problem, someone somewhere is probably struggling with it too. Or at least someone will in the future. Well, I got a bitter taste of what it’s like to have this problem. Being in the dark, not having the answers you need, and constantly asking yourself, “Is there any hope that my future becomes bright again?” I’ve been there. Actually, I’m still very deep in the middle of this shit!
I know this dark place. And I have no other option but to embrace it, find a way to stay afloat, and push on. And I know there are people with the same or similar problems. Same questions. Same dark thoughts. Probably just got the news that there’s something growing in their head or somewhere else inside them. Scared. Not knowing what all this means. Asking themselves if this is it. How much time they even have left on this Earth. Desperately grasping for answers while questions keep piling up. Drowning, but desperately splashing around in hope they’ll keep their head above water.
Yes, there are people—people dealing with these problems. For a start, I’m one of them. Maybe you came here with the same burdens on your shoulders, or perhaps you know someone like this. I’d like to share my struggles and how I deal with them so that maybe—just maybe—I can help someone else better deal with their own.
Even if I can shine just a little light on what life is like for someone with a tumor—whether it’s their spouse, partner, family member, friend, coworker, or even a random stranger—this is a win for me. If I can make someone feel not alone or even give them a glimpse of motivation or hope—that would be even better. If you’re a person with a tumor—any kind, not just Vestibular Schwannoma—this is for you! If you find these words somewhat readable and useful, you’re very welcome to come back here any time you need to.
Let’s deal with the HOW question now. That one’s not so clear to me, and as a result, it’ll probably change over time. But for now, I’ve envisioned it something like this:
This blog—website—or however you want to call it, will be a little window into my personal world, pointing toward how I deal with my VS and everything that comes with it. I’m not a native English speaker. Actually, I’m from the beautiful country of Slovenia, and my English grammar isn’t where it should be. Although I’ll try my best, please don’t expect too much grammatical accuracy from my end—and for that, I sincerely apologize in advance.
In some posts, I’ll probably just spill out what’s on my mind and what I’m dealing with—sort of a publicly available log or diary, but not in any consistent format or timing. In others, I’ll probably dive a bit deeper into how I manage this VS thing in my head and what keeps me sane (I’ve changed my life quite dramatically). And in some other posts, I may go into more scientific or research-based topics—but those will probably take more time and might be rarer. We’ll see.
And for now, I’ve decided to keep some level of anonymity. I think this will change in the future to some degree, but for now—as long as I’m still figuring out if this VS can give me superpowers and make me a superhero (which, by default, are always shrouded in mystery)—I shall stay somewhat anonymous. Thank you for your understanding.
“Eccolo!” First post done. I really hope you enjoyed reading it as much as I enjoyed writing it. Looking forward to seeing you around.
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