Rebecca HaithcoatThe earth beneath Jennifer Lee's foot vanished.
It was autumn 2015, and the L.A. producer and DJ, who goes by Tokimonsta, had recently announced a new album and tour. That fall, she'd grown increasingly aware of puzzling things happening in her body — her fingers would go numb one by one, which was explained away as carpal tunnel syndrome; the side of her lips went numb — but this was alarming. She took a step and never felt her foot connect with the earth.
“There was nothing there. I had a ghost foot,” she remembers. It's two years later on a balmy afternoon in late September, and she's about to play the biggest hometown show of her career — a sold-out headlining gig at the Wiltern. Lithe in all black, she surveys the spread from her tour rider, then grabs a handful of cheddar and sour cream potato chips and pours herself a glass of Kendall-Jackson sauvignon blanc. She wrinkles her nose before wandering over and perching on a sofa in one of the Wiltern's gilded dressing rooms.
Freaked out by her foot's loss of feeling, she saw her doctor, who ordered an angiogram. What happened next turned Lee's life upside down. She was diagnosed with moyamoya, a rare, progressive vascular disorder in which the arteries that provide blood flow to the brain, including the vital carotid arteries, begin to narrow. Untreated, the disease is fatal.
In the three months following the diagnosis, Lee's plans for her album and tour were replaced by plans to simply stay alive. She underwent two brain surgeries and woke up to the terrifying realization that she had lost the ability to comprehend language and music.
But Lee wasn't unaccustomed to a fight. She'd thrived in Los Angeles' testosterone-laden beat scene, honing her wrist-flicking mixing skills at the weekly, world-famous club night called Low End Theory, smoothing rap and R&B into sleek, electro-kissed tracks and becoming the “First Lady of Brainfeeder,” the record label belonging to the city's most exciting experimental electronic musician, Flying Lotus. Within a few months of the surgeries, she would begin work on her just-released album, Lune Rouge, and, unbelievably, perform at South by Southwest and Coachella.
But before all that, she had to recover the ability to make music at all.
Lee first heard the word “moyamoya” back in 2005, when she was in college. She was suffering migraines so severe that she went to see a doctor, who discovered a small but curious area of abnormal narrowing in her carotid artery, a typical symptom of moyamoya.
Moyamoya is exceedingly rare; fewer than one person in 100,000 has the disease. So although it occurs more often in both Asians and women, Lee's doctor dismissed the possibility of her having it.
“They were just like, 'It's too rare, you just have one little abnormality. This is fine. It's something weird, but your brain is completely fine, all the blood flow is fine,'” Lee says. “Until I show up after the ghost foot and the doctors are like, 'You know, you only have 5 percent [functionality in the carotid artery on] one side and, like, 10 or 11 percent on the other side.'”
In response to the blockage, our self-correcting bodies compensate by developing their own tiny vessels designed to feed the brain. The appearance of that cluster gives moyamoya, which was first defined in Japan in the 1960s, its name, a Japanese word that roughly translates to “puff of smoke.” Because those backup vessels are so delicate, however, they can't carry enough blood and oxygen to the brain. This triggers crippling headaches that are unresponsive to medication; seizures; hemorrhaging; and, eventually, strokes — which often present as droopy facial features. Or ghost feet.
Reading the results of her MRA in December 2015, Lee's radiologist in L.A. confirmed she was symptomatic of moyamoya.
“It sounds like a cliché, but in a wink of the eye everything could be taken away from you. I was face-to-face with the fact that I might not live,” says Lee, who's soft-spoken but steely. “It's very sobering, and also very much came out of nowhere, because up to that point I was really fine. There were no extreme symptoms for me.”
Such reduced capacity in her arteries was startling. But even more terrifying was the unpredictability of the new transportation system taking blood to her brain. It was only a matter of time before the fragile, makeshift vessels exploded, and there was no means of gauging how long that might take. Without surgery, most people with moyamoya do not live past the age of 40.
Tokimonsta; Credit: Danny Liao
“I think I have a pretty strong will to survive,” says Lee, who is in her early 30s. “How I exist on this planet, how I was raised, I'm very resilient. I had to persevere.”
Still, as holiday merriment swirled around her, Lee sat down and started writing her will.
Moyamoya is an apt name for such a nebulous disease. Simply diagnosing it is hazy territory, says Dr. Gary Steinberg, the vascular neurosurgeon who treated Lee. Once, he admitted a woman with moyamoya who had been misdiagnosed as suffering from multiple sclerosis for 20 years. Even understanding what causes the disease, or why people of Asian ethnicity are more prone to having it, has been elusive knowledge. Only in 2011 did researchers identify the first Moyamoya susceptibility gene, RNF213.
“What we believe happens is that the smooth muscle within the blood vessel in the base of the brain overgrows and blocks off the vessel,” explains Steinberg, chair of neurosurgery and director of the Stanford Moyamoya Center. He treated his first moyamoya patient in 1991: A woman driving across the Golden Gate Bridge was pulled over for drunk driving, then discovered she was suffering a hemorrhage from the disease. Since then, he's treated almost 1,000 patients, establishing Stanford as the largest moyamoya referral base in the world — which makes wrangling an appointment considerably difficult.
“Desperate and scared shitless,” Lee googled the head nurse's email address and pled her case. To Lee's surprise, the nurse asked for her paperwork and told her to come in.
“Jennifer's email was very clearly that of someone who I was concerned was at high risk for a stroke based on the information she was conveying,” Teresa Bell-Stephens, the neurosurgery nurse coordinator at the Stanford Moyamoya Center, tells L.A. Weekly via email. “She told me she was actively having what I considered stroke-like symptoms that were progressing from intermittent loss of sensation to include intermittent motor (muscle) weakness. I was very worried that if we didn't get on top of her case right away, she might have a major and irreversible stroke leaving her with permanent damage.”
The only treatment for moyamoya is brain surgery. With the carotid arteries shutting down and the baby vessels constantly on the verge of bursting, a surgeon must create another source of blood flow to the brain.
Lee chose to book her two surgeries back-to-back. “It meant I didn't have to think about dying twice.”
“What's interesting about moyamoya patients is that they have a very high tendency to develop new vessels from any vascular tissue you place on the surface of the brain. In Jennifer's case, I placed a scalp artery on the surface of the brain,” Steinberg says.
First, he removed the bone and opened the topmost membrane and first interior line of defense against harm, the dura. Next, he sliced into the arachnoid, a thin membrane that also covers the brain. Finally, he took an artery he had dissected from Lee's scalp and laid it down on the brain's surface, a procedure called an “indirect revascularization.” If all goes well, that artery grows new vessels in three to six months, taking over for the damaged carotid arteries.
Both sides of Lee's brain were occluded, so she needed two different surgeries. Instead of scheduling the surgeries several weeks or even months apart, she chose to book them back-to-back.
“I kind of faced it head on. That's very much my style. If there's a problem, let's fix it,” she says. “It made that period of time extra difficult for me, but at the same time that means I didn't have to deal with the same surgery again later. It meant I didn't have to think about dying twice.”
Lee was fortunate: As it turned out, dying from moyamoya wouldn't be a lasting concern. But losing the ability to make music was.
Jennifer Lee grew up in Torrance with a single and very traditional Korean mother. As a child, she played classical piano and harbored a serious cartoon habit, but by the time she entered UC Irvine, she'd settled on a business major.
Yet her real education wasn't happening on campus; it was happening in L.A. She'd been making beats for fun and wanted to test them out at Leimert Park's famous Project Blowed. Laughter rippled through the crowd when Lee took the stage, but they shut up fast when she let her music loose.
Tokimonsta, aka Jennifer Lee; Credit: Danny Liao
As Project Blowed fizzled out, Lee moved over to Low End Theory, a new club night for beat junkies at the Airliner. Music is serious business at Low End. Some people dance, yes, but the dense, mostly male crowd generally stares intently at the producer-performers, studying them. Soon Lee was a regular, one of the few girls playing with the boys. Her signature style has always been a balance of sexiness and elegance, and her sets injected a welcome, warm sensuousness into Low End.
After graduating she got a 9-to-5 as a business development coordinator for a video game publisher. She liked the gig but was laid off. Her reputation as a producer was rising, but she still considered it a hobby. It was only in 2009, after she lost an advertising job she despised, that she decided to dedicate herself to making music.
A year later, Lee dropped her debut album as Tokimonsta, Midnight Menu, and was invited to sit at the cool kids' table with Flying Lotus and his Brainfeeder crew. Since then, she's been prolific, releasing almost 10 projects, including Lune Rouge, and numerous remixes.
Dr. Steinberg warns his patients. He tells them not to freak out if they wake up and can't move their tongue, or if they try to text and the message is gibberish. Or if, having spent their lives turning to and creating music when they needed comfort, they flip on a record and it sounds like … noise.
The brain has to adjust to the new blood flow and besides, his fingers and scalpels were just inside the control center. Auditory malfunctions and lapses in speech are to be expected and are nearly always temporary.
When Lee woke up on the second day after her first surgery, the changes did not feel temporary. “It's very strange to not understand something that you know you're supposed to. 'Cause you're just inside your own head being like, 'I don't even understand why I don't know what anyone's saying,'?” she says. “It's almost like Charlie Brown when the adults speak.”
But if losing comprehension of language was difficult, for an artist, losing music comprehension was worse. It wasn't that Lee heard nothing — it was that she heard harsh, dissonant sounds instead of the songs she loved. She often described it to her friends and family thus: “Imagine sleeping 10 hours and waking up to thrash metal.”
“It was pretty brutal once I came to the realization that music sounded weird,” she says. But then she would remind herself of the reason she wanted to live: “I wasn't like, 'I need to stay alive so I can make music.' That wasn't what I was thinking. I was thinking, 'I need to stay alive because I have so much life left to live.' My mom's had two husbands pass away. All she has is me and my sister, and all my sister has is me and my mom. I can't do that to them. That was another one of those epiphanies I realized at the end: Our life is never our life.”
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On her birthday, Jan. 26, 2016, Lee was discharged from the hospital. Sitting or lying down most hours of the day had weakened her musculature and left her almost unable to walk, but her speech had increased to about 70 percent. The next month, she tried to re-enter her life, but her brain could not figure out how to make music. Everything she put together sounded wrong. She'd always been able to create music without much thought, and the loss of that effortlessness gutted her.
So she stopped trying. Instead of music, she watched a lot of South Park. She cut out a casual cigarette habit and began doing cardio even though she hates it. She visited the very active (and only) online moyamoya forum, searching for answers to questions like, “Is it normal for your head to squeak?”
Small things grated on her nerves, like the show Portlandia (she didn't get the jokes) and not being able to eat a sandwich (her jaw, still healing from where they had to cut through muscle to get to her skull, wouldn't open wide enough). In the mornings, she could feel her vocabulary swelling, but as the day progressed, exhaustion set in and the pool shrank again. She became a touch agoraphobic and that, combined with the residual stress from the surgeries, made her prone to panic attacks.
Still, she pressed on, clinging to the positives, such as the 95 percent revascularization success rate, or simply being alive.
“You're reminding yourself how grateful you are that you woke up from the surgery. Both surgeries are very long, so you're under anaesthesia for a very long time, which carries great risk. Everything basically carries great risk,” she says. “But not getting the surgeries carried a greater risk.”
And then, just as she was feeling comfortable in her body again, she was dealt a completely unexpected blow that left her gasping for air: Her boyfriend broke up with her.
“That was the worst I felt during the entire experience. I'd never felt so alone. I [was still] not fully functioning, and this guy I love just left me,” she says. The couple had been together only six months before Lee's diagnosis, and she knew it was a heavy burden, but she thought the ordeal had strengthened their bond.
Lee was devastated, but the breakup shook something loose in her. The day after he cut off the relationship, she found that her musical abilities had come flooding back. Before she knew it, she had made “I Wish I Could,” the first song that ended up on Lune Rouge.
“If I hadn't made that song I definitely would've thought I was a musical potato. Music is very cathartic and therapeutic, so I just needed to try to make something. Then I did, and it ended up being a good song,” she says of the upbeat, piano-driven ballad, on which guest singer Selah Sue emotes such deeply felt lyrics as, “I will feel the sorrow/But the night is full of day/I'ma hold on to life.”
She and her boyfriend have reconciled and are now in therapy together, something the stoic Lee says has been hugely beneficial to her. But “it's still a very emotional song. I've heard it a zillion times and it really fills me with a kind of sadness. The good thing is that it's also very uplifting.”
In a stunning turn, the breakup dislodged not just her creative block but whatever mental barriers the brain surgeries had erected. “I felt extra excited to be able to make music, so I made a lot,” she says. So much so that she plans to put together an EP of the songs that didn't make Lune Rouge.
Lune Rouge pulses with the power of that pent-up creative streak. “Lune” and “Rouge,” the twinned openers, are cinematic and symphonic. Bright strings lend the former a dramatic feel, while the showy latter is populated by curious sounds that instantly engage you. Isaiah Rashad, Joey Purp and Ambré swagger through the sparse, cocksure “NO WAY,” while “Don't Call” is the opposite, a fluttery, delicate track perfect for Yuna's powdery vocals. It's a more confident, bolder album than Lee has ever released, one made even more impressive considering she began working on it less than two months after brain surgery.
“I'm always very grateful just to be alive, but knowing I wasn't able to make music would have been a very crushing reality. Now I hope to make tons and tons more music, until, you know, something else stops —” She halts, pauses. Tries again. “Unless — until whatever, you know? I guess at this point, the reality is the future doesn't exist. What we have is what we live.”
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Tokimonsta wants to dance. It's nearing midnight, and she's hunched over her turntables at the Wiltern, orchestrating a party. She's a hummingbird: The ruby red bolero wrapped around her black-on-black ensemble billows as her arms flit across the boards, hands twisting knobs, hips ticking to and fro, head nodding in time to Missy Elliott's jittery “Get Ur Freak On.” She lets it play a minute before downshifting to a glistening, sexily unbuttoned house vibe. A smile breaks across her face as she grabs the mic.
“It's a really good day to turn up!” she says. “I just wanna dance with you.”
She has plenty of reasons to be in a celebratory mood. Her album Lune Rouge comes out in a few weeks. The hometown crowd loves her, and she parades out a couple of old friends, including breakout star Anderson .Paak.
And she's alive. Less than two years ago, she was writing her will and booking two brain surgeries. She was confronting the possibility that she might never make music again. She was confronting the possibility that she might never do anything again.
Life after moyamoya is a little different, she admits, but not in the drastic ways you'd expect from brain surgery.
“I have, like, two holes in my head. My head's really bumpy now, so I can't get head massages anymore, which is kind of a bummer,” she says. Dehydration can cause her blood pressure to drop, which can cause symptoms of the disease, so “I have to drink at least three liters of water a day.” But at her six-month checkup, they told her she could live without restrictions.
“My outlook has changed. I have a new zest for life. It can be taken away,” she says. “I realized that I just want to make music that made me happy, because at the end of the day, if I have to say goodbye, I wanna know that the last few things I did on this planet were things that I was like, 'I had fun.'?”
Onstage, she hooks the mic back into its stand. She throws her hands up and her head back and starts to dance.
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