Surprisingly, bleeding in your brain can feel rather subtle.

I was sitting at my desk in Bozeman, Montana, when a strange headache crept in. It spread across my scalp and then settled into the left side of my face, my eye socket, cheekbone, and toward my ear. The skin felt sensitive. My index finger and thumb tingled. The inside of my mouth felt like someone had smeared menthol across it.

I assumed it was a migraine. I’d had a handful before, and it felt like something I could sleep off and move on from. It didn’t feel like the beginning of something that would change my life.

Over the next 18 hours, it did.

An intense nausea took over, and I began throwing up every thirty minutes for seven hours straight. Every fluid I tried, Sprite, Pedialyte, Gatorade, and water, came right back up.

I stared at the light fixture on the ceiling, and it was spinning wildly. I tried to focus on something still. Instead, I saw double, every object duplicated, one image stacked directly on top of the other. I closed my eyes and squinted to try to reset my vision. But every time I reopened them, the ceiling swirled again.

I was unable to walk. My whole world felt tilted 45 degrees down and to the left. When I tried to walk a straight line, I veered into the wall and fell over. Eventually, I had to crawl to and from the bathroom.

My voice changed, too. When I tried to speak, the sound that came out was a little raspy, airy and thin. Words were difficult to push out. It felt like there was a weight sitting on my chest, like breathing wasn’t automatic anymore. I felt like my throat was partially collapsed.

The ER in Bozeman wasn’t sure what was happening, so I was transported to a Neuro ICU in Salt Lake City. I was flown out on an air ambulance in the middle of a blizzard with nothing but the pyjamas I was wearing and my purse.

Somewhere between the airport and the hospital, the exhaustion caught up with me, and I started crying.

What is happening to me?
How long do I have to live?

The EMT saw me and put his hand on mine and said quietly, “One day at a time.”

When something like that happens, when your health forces its way into the centre of your life, everything else disappears. Next year isn’t real. Next month doesn’t exist. Your entire future collapses into the present moment.

Eventually, doctors discovered the cause: a cavernous malformation, a small cluster of abnormal blood vessels sitting deep in my brainstem. The brainstem controls things most of us don’t think about – vision, balance, breathing, swallowing, and coordination. Because of where mine is located, surgery would be extremely risky and could leave permanent neurological and physical deficits. So, the official medical plan was simple: monitor it and live with it.

After six days in the hospital, I was discharged. But I wasn’t back to normal. I had no appetite and lost 10% of my body weight in less than a week. Then the hiccups started. Not normal hiccups, but violent, relentless ones that lasted two to three hours at a time for five straight days. They were exhausting and terrifying in a way that’s hard to explain. I was convinced they would never stop.

Over the next four weeks, my physical symptoms slowly improved. My vision steadied, my balance returned, breathing became easier, and eventually the hiccups stopped. It felt like I was out of the woods.

I wasn’t.

If you’ve never experienced medical trauma firsthand, it’s easy to assume the hardest part is physical. It’s not. The body heals, but something else lingers.

Before this, my future felt open and expansive. I saw my future as limitless, an open horizon. Afterwards, it felt like I was staring at a concrete wall. I felt like I had hit a dead end.

I turned into a small, anxious version of my previous self. Suddenly, I was afraid of the things I had always loved – travelling to obscure places, hiking in remote wilderness, even continuing to live in Montana.

How could I keep living the same life knowing this thing inside my brain could bleed again at any moment?

Knowing you have something inside your body you can’t see, that could suddenly flip your whole life upside down, feels like a nightmare. You can drive yourself crazy trying to analyse every little decision you make each day, wondering if it might somehow set this bomb off inside your head. Eventually, you start inventing your own anecdotal theories and hoping they’re right.

I sought out therapy, including EMDR, which helped tremendously. It allowed me to release a lot of the emotional intensity surrounding the experience. I still logically know the cavernoma is there, but emotionally it feels more distant now, like something from a past version of my life.

And slowly, life started to expand again. The uncertainty never completely goes away, but it shifts. It becomes something you carry instead of something that stops you.

My story isn’t unique. Thousands of people live with cavernous malformations, and countless others live with rare conditions most people have never heard of.

And yet there is a particular loneliness that can come with rare diagnoses. Even with doctors, resources, organisations, and support groups, you often end up navigating large parts of it on your own. It feels like you are an N of 1. Every case is different, and there is still so much that doctors don’t fully understand.

Most people have never heard of cavernous malformations. When I say the words “brainstem cavernous malformation,” I usually get a polite nod and a slightly confused look while people try to figure out what question to ask next. And that makes sense, rare conditions are…rare. But for the people living with them, the impact is enormous.

A rare diagnosis doesn’t just affect your body. It reshapes how you think about risk, control, your independence, and the future. You become much more aware of how fragile some of our basic human systems really are – capabilities we normally take completely for granted, like seeing, walking, breathing, swallowing, and speaking.

I still have that cavernoma. It’s sitting quietly in my brainstem. It could bleed again at any moment, or it may never bleed again.

There’s nothing I can do about that. That’s not something I can fix. It’s not something I can control.

But life was never guaranteed to begin with. I just didn’t realise how much I was assuming it was. This made it impossible to ignore.

The uncertainty doesn’t run my life anymore.

I can choose how I live with it.

All I can do is live one day at a time.

Author Bio

K.C. lives with a rare brainstem cavernous malformation and shares her experience to raise awareness about cavernous malformations and the emotional realities of rare neurological conditions.