What do you do when you receive the worst kind of news? Lose your shit? Act like a baby? Both seem reasonable, frankly, but some people manage to sidestep all of that. People whose grace and unchecked optimism carry them through and, ultimately, inspire everyone around them. Karen is one of those people. I asked her to tell me her story, starting in 2015 when she learned she had not one but two brain aneurysms, and below is what she told me.
In January of 2015, I started experiencing intense headaches whenever I worked out. As soon as I exerted myself, my head would feel like it was being crushed between two gigantic hands. As a sufferer of migraines, I knew that this was different. My Googling was fruitless. Finally, I caved and went to the doctor for a series of tests.
“You are perfectly healthy,” he told me. “Sometimes these kinds of headaches just happen to people and then they go away. But let’s send you for a CAT scan just to make sure it’s not a tumor. I’m sure it’s nothing.”
We scheduled the CAT scan for a week later. The day before, I went to the gym and my headache didn’t happen. It was miraculous! I considered canceling the appointment but then thought better of it. The very next day I found out I had two aneurysms.
Aneurysms are weak spots in the artery walls that affect the supply of blood to the brain. One was tiny, the other far more concerning. I was shaken, scared and completely thrown. To my relief, the doctors were very reassuring right off the bat. They told me: “Catching it as we have is the best thing that can happen to you.” I learned that aneurysms are completely unpredictable and, more often than not, don’t show any signs or symptoms. Typically, people don’t know about them unless they’re accidentally discovered during tests, or worse, after a stroke.
A week later, I went to see a brain surgeon who specializes a kind of non-invasive procedure to remove aneurysms. It’s the ideal approach, but it’s sometimes not enough. The surgery has two parts; the first involves checking to see if the shape and size of the aneurysm is ideal for the non-invasive route. It’s called an angiogram: They thread a ridiculously long wire up through the top of your thigh and into the brain and then shoot dye in there so they can see things better. I was awake for the whole thing. It was very strange. Unfortunately, they never got to the second part as they discovered I was indeed the wrong candidate. The more serious, invasive route was going to be my only option.
We scheduled it for March 3rd and then I waited.
Through this whole process they kept stressing they needed my family history, that this can be hereditary. That’s when I found out that my mother’s aunt also had a brain aneurysm. Even weirder: She’d discovered it because she was having incredible headaches. My headaches had stopped before my CAT scan, as I mentioned, and never returned. Later I found out they had nothing to do the aneurysm, which is the same exact thing that happened to her, too. Right then I decided she was my guardian angel, that she had sent me a headache that sent me to the doctor. She lived to be 85.
Her surgery, too, was on March 3rd.
The hardest part of all this was sharing my situation with people. If the first procedure had worked, I would’ve told people pretty quickly. But when it didn’t, I was nervous to worry everyone. I eventually had no choice but to tell my family – particularly in light of the realization that this can be hereditary. I had to tell my siblings, nieces, nephews and cousins to get tested as well. One of my sisters actually found out she also had two aneurysms. Hers are both on the smaller side and, after weighing the pros and cons of age, surgical risk, etc, she elected not to proceed surgically. Luckily, everyone else was clear.
For some reason, I wasn’t quite up to sharing all this with my friends. The surgery was a full-day thing and the last thing I wanted was a bunch of people pacing a waiting room. I wasn’t worried about the outcome, I just didn’t want everybody else to have it on their minds. Plus, I felt completely normal. I looked the same and I had no symptoms. It felt like a strange non-event and spreading the word seemed melodramatic.
Since I was told I’d have a large scar, the weekend before the surgery I asked my hairstylist to give me a fade on the left side of my head, following my natural part and going back just behind my ear. It helped me to sort of take control of and own a situation I had little control over. You know, shave my head on purpose! It was quite fabulous; I really liked it a lot. It also helped me put a positive face on it. I hoped it said to my family: “Don’t be scared, this is actually a really lucky thing!” Since then I’ve continued to do a fade on that side of my hair with streaks of pastel. It’s been so fun.
On the day of the surgery, the last thing I remember is looking around the room and then coming to, hours later, and realizing my head was completely wrapped in gauze and I was desperately thirsty. All I was allowed to eat was ice chips and I had trouble speaking. It was like my brain and tongue were a little bit disconnected. They said this was normal and eventually we grew to find my weird sentences a little amusing.
I was in the hospital three days. When I left, I was still having a little trouble speaking and there was a large C-shaped scar, covered in staples, that went from just above my left eye to back around my ear. Cutting through my jaw muscle meant it was difficult to open my mouth. I had to do exercises for a long time. Today the scars look a little odd – there’s a deep dip in my temple, for instance — but it could be worse.
On March 19th, I had the staples removed and went back to work. It was such a whirlwind, and so bizarre how quickly it all happened. I wanted to go back to normal life as soon as possible. I was just thankful we caught it when we did. Everything and everyone just kept reinforcing that I’d gotten really, really lucky.
It was tough, in that sense, to share the news with my friends. It was an intense procedure, but it all happened so fast and most of them didn’t even know until it was over. It was hard to learn that some of my friends were really hurt by my not sharing sooner. I have one friend who is still offended. It makes me sad. I can see why somebody might think that I don’t value them enough or trust them enough to bring them in, but that wasn’t the case here. Everybody has to deal with an unexpected thing in their own way. We’ve got to respect that.
Life is very unpredictable. I tend to look for the most positive spin. In 2013, my younger stepson suffered a traumatic brain injury and that was a lot harder to go through than what I went through. He’s such an incredibly strong and inspiring person. At the end of the day, there’s enough in the world that is negative. I don’t need to go searching for it or soak myself in it. Anytime I can find the hidden rainbow or the silver lining, it makes my life so much easier. And in the end, life is good, you know? I’m very fortunate.
Collages by Maria Jia Ling Pitt and Emily Zirimis.