Gender & Identity, Life

When my little sister was diagnosed with a rare brain disease, I had to learn how to trust her

I'd always been so protective of my sister. Finding out she had to have brain surgery was not easy.

My little sister has been through more than any child should. But she’s also the bravest person I know.

After years of struggling with mystery symptoms, she was diagnosed with a very rare brain disease called Moyamoya. In Japanese, it means ‘puff of smoke.’ It concerns the blood vessels in her brain, and without surgery, she was at a very high risk for a stroke. When we got this news, everything changed. But some of it changed for the better.

When my sister was a baby, my biggest fear was something happening to her. She nearly choked on a cracker once and ever since the idea of her getting hurt in any way makes it a little hard to breathe. Now that she’s a little older, she’s an athletic kid. Because of this, her favorite thing to do is climb anything she can find and hang upside-down from it. I think part of why it’s her favorite is because of how I react: with pure panic. I can’t handle the ease with which she places herself in danger.

Still, her thirst for life and adventure were things I could not deny. If anything, I could relate to them. Our shared anxieties always brought us close. But we bonded through our determination. Watching my little sister, I witnessed the ability to forge ahead like I never had before. Finding out about her illness only strengthened the resolve in her. She was in real danger this time. And like finding her hanging from the furniture, all I wanted was to catch her and keep her safe.

Because the disease is so rare, there are very few facilities that specialize in the kind of care she needs. We were lucky to have a community of friends and family to help raise funds for her to have surgery where she would get the best care. At the hospital, she braved some of her biggest fears and tackled recovering from the life-saving procedure like the superhero that she is. And even though she was emotionally and physically drained, she still managed to open her eyes and say, “Hi mommy,” with a sweet little wave the first time she was able to see our mom after the surgery.

And while life is different now, with things like brain scans to check her progress or new rules like keeping hydrated and taking her medicine, she is still the brightest and kindest person I know. She loves to dance, and does it often. She’s even playing on the school basketball team with her friends – something that even her doctors didn’t anticipate happening so soon. And while I’m still terrified every time I find her hanging upside-down from something, it’s nothing but instinct.

Because what I’m really feeling is so very thankful to have her here. To see her shining. And yes, to watch her gain strength by doing the things she loves – even if they’re a little dangerous.

  • Shannon Aplin

    Shannon Aplin is an activist and an artist with a love for travel and pop culture. She holds a B.A. in Biological Anthropology and loves nothing more than listening to her abuela tell old stories. When she isn’t writing, you can find her composing music, daydreaming, and fighting the stigma against mental illness.