Familial Brains - Pacific Standard

Familial Brains

If the unwelcome death of her uncle taught Emily Mullin anything it's that our lives are transient and largely out of our control.
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(Photo: Rob Byron/Shutterstock)

(Photo: Rob Byron/Shutterstock)

I was about 10 years old when my parents told me something had happened to my dad’s older brother, Uncle Mike. They said he was alone and passed out. Someone found him a few hours later, unconscious on the floor. An aneurysm in his brain had ruptured. I didn’t know what that was, but I knew it was bad.

Uncle Mike was 22 years older than my dad, but they were always close. His mischievous but good-natured manner made him my favorite uncle. When my parents told me about Uncle Mike’s accident, I was worried, but I didn’t grasp the gravity of what had happened. Not until I was a teenager would I learn that ruptured brain aneurysms are fatal in up to 50 percent of cases. Typically, there are no warning signs. When I realized what this meant, it terrified me: The thought that people could be wandering around with a tiny ticking time bomb in their heads, ready to explode at any time. It meant that you could be a walking, breathing person one minute and brain dead the next.

People who survive such a hemorrhage can experience a range of physical and mental side effects, including loss of motor skills and memory. Sometimes, an individual’s personality may be altered. Uncle Mike was only in his 50s at the time, but his doctors didn’t think he’d survive the trauma. He did, but he would never be quite the same again.

I can’t remember much about Uncle Mike before his accident. Who he was after the aneurysm eclipsed many of my earlier memories of him. I remember his big, toothy smile and deep, hearty laugh that sent him into fits of coughing when he smoked cigars with my dad. He had a kind, ruddy face and wore thick glasses like the kind my dad and I have. He loved antiques and old cars, and I rarely saw him drink anything except coffee. His favorite cup was a plastic yellow mug that said “Best Dad.” Brett had gotten it for him as a kid, and Uncle Mike never washed the thing.

After the aneurysm, I never once heard him complain, even though he must have struggled to regain a sense of normalcy. His accident not only changed his life, but its ripples affected all of us, in our own way.

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An aneurysm occurs when a blood vessel in the brain is congenitally weak. When blood pressure builds up, the vessel bulges at its weakest point. This is the aneurysm—a shiny, red berry hanging on a stem. When the aneurysm ruptures or leaks, blood bursts into the brain. Hypertension and smoking can increase the likelihood of this happening, but family history appears to be the biggest risk factor. Scientists believe certain genetic conditions may be at play.

After my uncle’s aneurysm, his doctors recommended medical screening for his four siblings, including my dad. That was when they found a budding aneurysm in my other uncle’s brain. Most aneurysms never burst, but in some cases, doctors suggest a preventive surgery. This cringe-inducing procedure is called clipping. To get inside the brain, surgeons have to remove a small portion of bone in the skull. Through the opening, they attach a titanium clip, which has a coiled head on one end with a set of prongs that attaches to the base of the aneurysm on the other end. Surgeons slide the base of the aneurysm in between the two prongs and clamp down on the clip to restrict blood flow and keep blood from entering the aneurysm.

My other uncle had the clipping surgery years ago, and as far as I know, he’s never had any problems with his brain. My dad has had three or four screenings, and so far, his brain is free of deadly berries.

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Uncle Mike had to re-learn the most basic tasks, like walking and feeding himself. It took years for him to regain his motor functions, and even then, he spoke and moved as if in slow motion. He was never able to go back to work as a union glassmaker, but as soon as he was on his feet, he once again started caring for his wife, my Aunt Barbara, who developed a disability early in their marriage.

After the aneurysm, I remember visiting Mike, Barbara, and their four children. We’d gather at my uncle and aunt’s, only a 20-minute drive from my childhood home in Western Pennsylvania, for birthdays and holidays, mostly Christmas. Maybe it wasn’t that we spent more time with them or visited more frequently than before, but looking back, I know I cherished those moments more, especially as I grew older. Knowing how close we’d come to losing Mike, those visits were so important.

During those visits, which were at first spaced out by months, and later by a year at a time, my uncle’s lovable personality that I’d known as a kid started coming back. As I grew older, Uncle Mike told me I got prettier every time he saw me, even during the awkward years of bad haircuts, braces, and splotchy acne. In my teenage years, he’d teasingly ask if I had a boyfriend. If I said I was dating someone, he’d raise his eyebrows, nod emphatically, and emit a string of vowels that was something between an awww and an oooh sound.

Everyone thought Uncle Mike was beginning to seem like his old self again. He made jokes and would tease my dad when we visited. He transitioned from a wheelchair to a walker and was becoming more mobile. Sometimes though, I’d notice him staring blankly at nothing and no one in particular. It was as though he forgot who or where he was for a moment. He got confused easily, too. Once he came to see me perform in a school play. We were rehearsing during the school day, and he thought he’d surprise me. I was in high school, but he mistakenly went looking for me in the middle-school building next door. He wandered in, alarming the secretary on duty. After clearing things up with my mom over the phone, the secretary escorted Uncle Mike to the high school. He sat alone in the back of the auditorium, grinning and laughing to himself. He told me afterward it was the best thing he’d ever seen.

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By my senior year in college, I started to have fears about my own brain. I suffered from frequent migraines, and when I came down with one I worried about the source. Logic told me my headaches were just headaches, most likely worsened by stress, but the other part of me fretted that I had inherited some fatal family flaw. I read that cerebral aneurysms are more common in women and imagined a little red balloon in my head inflating until it popped. I tried to shake off the thought. But my uncle’s aneurysm had come with no warning, so my fears weren’t that irrational, right?

I was young. I had never genuinely been afraid of dying. What gnawed at my insides was the uncertainty of not knowing whether or not one was growing in my brain. An aneurysm was something beyond my control. It could rupture suddenly, and it might not kill me, but it could rob me of my ability to think, do,  and remember all the things that collectively made me who I was.

Scientists estimate that about three million to six million people in the United States are living with an unruptured aneurysm. That’s as many as one in 50 people—not an insignificant statistic by any means. Most of these people don’t even know they have one, but then again, most aneurysms won’t ever rupture. For someone like me, with at least two close family members affected by brain aneurysms, doctors recommend routine screening every five to 10 years beginning in a person’s mid-20s. Screening is controversial in the medical community, though, as some research has shown that it may not reduce the incidence of death from an aneurysm. Some aneurysms may be too small to be detected by magnetic resonance angiogram, or MRA, a type of MRI scan that’s used as a screening tool to take pictures of the blood vessels in the brain.

Still, I thought screening could give me some sense of reassurance. Maybe it could prevent something as devastating and confusing as what happened to my Uncle Mike. Maybe I could save myself from that same fate. Maybe I could spare my family the grief of going through that again. So, I consulted with my dad, and at 21, more than a decade after the discovery of my uncle’s aneurysm, I went for an MRI. Lying on the table, I listened to the humming, buzzing, clacking, and whirring of that claustrophobic machine while it took pictures of my brain. I got the results a few days later: no aneurysm.

I was relieved, even though I knew an aneurysm could grow over time. I didn’t have one now, or at least one that was big enough that the test could detect. I knew I could still develop one, but I didn’t want to think about that. Whether it was chance or something preordained, my brain was healthy—for now.

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Uncle Mike died in 2013 at age 72. I hadn’t seen him in months. During his last days he was in the hospital, sick with pneumonia. I was in the middle of stage-managing a play in Washington, D.C., when my mom called to tell me the news. It was Wednesday, and we had three more shows that weekend. My all-black stage manager’s clothes were suddenly appropriate for another reason. I felt sad, mostly for other people. I was sad for my dad, who bought Uncle Mike cigars for every Christmas, even when my mom protested. My dad said his brother had gone through enough and deserved the cigars. I was sad for Aunt Barbara, whose health had been declining over the years. She’d lost a husband and a caregiver. I was sad for my four adult cousins who had witnessed their father’s gradual improvement over the years only to see him die so sick in a hospital bed.

As for me, I felt like I had done my grieving already, throughout all those years of growing up and watching my uncle grow alongside me—back into his adult mind and body. What made me sad during those years was wondering if Uncle Mike knew what he had lost.

The day of the funeral, I drove back to Western Pennsylvania after the play closed, wondering what Uncle Mike would have thought of it. At the viewing on Labor Day, I kneeled next to his casket. Nestled inside were objects that represented his life—like his glassworkers union jacket and the yellow plastic mug that my cousin Brett had gotten him as a kid. I didn’t cry, but my eyes welled up when I watched my dad take his turn next to his brother at the casket.

I still sometimes worry that my dad has inherited the same familial traits that allowed an aneurysm to grow in both his brothers. My dad and I don’t often talk about hypothetical aneurysms. He thinks I shouldn’t let it bother me. I think he’s right, but maybe that’s just my innate optimism helping me along. The screenings my dad has had are enough to comfort him, and they should be enough for me, too. I try to reassure myself that my dad is fine, I’m fine. But sometimes, I wish we could talk about what we would do if it did happen to one of us. I wonder if my dad doesn’t bring it up because he secretly worries about his own health. I wonder if acknowledging our own mortality would make us less afraid.

It’s been six years since my first check-up, and sometimes I think I should get screened again. Maybe. Would it make a difference? Could my brain have changed that much in six years? Whether it’s my dad’s comforting words or the way Mike managed to reclaim his life over the years, the uncertainty of whether or not I might develop a brain aneurysm no longer scares me like it once did.

I don’t know if I believe more in the powers of luck or fate. Whichever governs us, what I do believe is that our lives are transient and largely out of our control. What’s in our control is how we decide to live with that realization.

As I left the funeral home that day in Pennsylvania, I took a prayer card with my Uncle Mike’s picture on it and tucked it in the visor of my car. Sometimes I pull out the card, and Uncle Mike flashes his warm smile at me, a silent reminder of the precious present.

The Weekend Essay is a regular series edited by Leah Reich.

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