How Music Producer TOKiMONSTA’s Near-Death Experience From Moyamoya Disease Changed Her Approach To Self-Care

“There’s a lot of power in saying no to things.”

Music producer TOKiMONSTA holding with her cat in the living room

In 2015, I was DJ’ing four days a week, back-to-back. When I was touring in Europe, my schedule got even more aggressive. It was pretty exhausting, and it ran me ragged. Sometimes, when I’d return home to L.A. from trips, I’d get really sick or need to stay in bed for a day. It would take me the rest of the week to recover.

I’d been suffering from migraines for about 10 years at that point. I consulted multiple neurologists in college, and my scans were normal — except for this one little area where the vascularity in my brain was shrunken by 60 to 70%. It was only in this section, so doctors thought it was an anomaly. All but one of them told me, “It's not a big deal.”

Receiving a rare diagnosis of Moyamoya disease

Then, in the fall of 2015, I had this weird episode where I was walking, and suddenly, I couldn’t feel my foot. It was a bizarre sensation, like I had a ghost foot. It felt like, as I put my foot down, there was nothing to stop my body from hitting the ground. It scared me. I went to the doctor and they ordered another MRI.

That’s when I was diagnosed with Moyamoya. It’s a rare blood vessel disorder where the carotid artery in the skull becomes blocked or narrowed. So tiny blood vessels develop at the base of the brain to compensate. Moyamoya means “puff of smoke.” That’s because in a scan, the arteries that feed your brain look like branches of a tree. But when you have Moyamoya, it looks like a puff of smoke because the branches are now getting shut off. If left untreated, most people with it die before they're 40. My disease was so advanced that I was basically a ticking time bomb by the time I was diagnosed. At any moment, I could have had an aneurysm or a stroke.

The following month, I had two brain surgeries, one week apart. I'm alive through the miracle of science. Today, my doctors have told me I can live without restrictions. But while I was recovering, I briefly lost language and my motor and comprehension skills. I had acute aphasia, and I couldn’t understand what people were saying to me. I felt like I was in Charlie Brown. Instead of words, it sounded like everyone was talking through trombones and trumpets. And I could not speak to anyone, either. The worst part was that I couldn’t really hear or understand music.

How recovering from brain surgery helped me improve my lifestyle & quality of sleep

After two months of recovering at home, I was back to about 80 or 90% function. Being on a regimented schedule helped a lot. I stopped drinking. I wasn’t working. I was just focused on recovery. And when I was on this rigid schedule, I actually slept better, too. Even though my brain was still recovering from surgery, the rest of my body became really healthy. And I realized that my lifestyle was leading to this deficit in my quality of sleep.

My attitude towards work changed a lot. Because I have Moyamoya, I don’t want to overstress my body. I will always be slightly more at risk for specific medical issues (like stroke) compared to other people. So, I’ve tried my best to stop over-committing and over-obligating myself.

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How TOKiMONSTA Balances Sound & Silence for Better Sleep

When I do travel for work, I have lots of hacks to streamline the process. I have one travel purse that already has everything I need inside. My passport, my AirPods, cables, hand sanitizer, lotion, earplugs, mask, medications — they don’t leave the bag. I also have a toiletry bag that's exclusive for travel. In my “gig bag” with my laptop, I always pack non-perishable foods like protein bars or jerky, just in case I can’t sit down for a meal before a show.

I set my sleeping and eating schedule to my destination the second I step foot on the plane, to fight jet lag. Sometimes that means turning down the meal service if it’s not the right time to eat. Adjusting in advance helps reset my circadian rhythm.

And when I get home from a trip, I always take the next day off to relax and decompress. Now that the world has opened up a bit, I'm on the road more often. But I try not to perform for too many days in a row. When I start getting into two to three shows a week, it takes a heavier toll on my wellness. If I go out for one show and come home, it doesn't disrupt my sleep or my health too much.

Learning to enjoy existence: Self-care, small stuff, and sleep

Anytime you have these life-affirming situations or anything that's really traumatic, you learn lessons from it. You're shown how easy it is for you not to exist. For me, the lesson was that self-care is essential. And that there’s a lot of power in saying no to things. I have a constant reminder not to sweat the small stuff. Life is too short. Just do the things that make you happy, think about yourself, and make art that brings joy to you and others.