Harley Bates: "I'm the most human I've been in years"

Harley Bates may not carry a guitar, but her lifelong journey to hell and back has made her a rock star—and a role model.

A joyful life, interrupted

Every young adult carves out an identity during their formative years. In high school, Harley Bates tried punk rock on for size and liked how it fit. She packed her playlists with snotty anthems from bands like NOFX, Rancid, and Social Distortion, legends who forged a scene in her home state of California and then took their music mainstream. She dyed her hair funky colors, decorated her torso with tattoos, and was a frequent presence in the mosh pit at local Ventura shows, where her joyous screams were drowned out only by thunderous drums and guitars. That was where she felt most alive.

Bates, now 22, doesn’t make it to many shows these days. For starters, she’s afraid the feeding tube she occasionally rocks will fall out if she enters a sea of flailing humanity. But it’s mostly because for the past few years, she hasn’t even felt well enough to leave her house, let alone push her body around in a pit.

Bates has been battling a rare chronic illness since she was born, but it was only after she grew comfortable in the life she always wanted, that a brutal treatment started wreaking havoc on her health.

Identifying as a fighter

Today, Bates’ wardrobe looks different. Gone are the graphic tees sporting the names of her favorite bands. In their place are shirts adorned with inspirational phrases like "Keep Going" and "Do What You Think You Can’t." Bates used to identify as a punk. Now, she fashions herself a fighter. Here’s how to follow in her footsteps.

#1: If your health’s at stake, speak up

Bates was born with a genetic disorder called neurofibromatosis, an incurable condition that causes tumors to grow on random nerve endings. She inherited it from her mom, Lisa, who knew there was a 50 percent chance she’d pass the disorder to her daughter. But the severity of the condition varies among patients; since Lisa’s tumors were relatively tame, she decided to take the risk. As it turned out, neurofibromatosis hit young Harley even harder.

At age 5, Bates had to have spinal fusion surgery to fix the 90-degree S-shaped curve on her spine, a direct result of the neurofibromatosis. While the surgery saved her from life in a wheelchair, the rest of her childhood wasn’t without struggle. She remembers suffering from constant stomachaches as a kid and having to convince everyone she was actually sick.

"I got in trouble at school a lot because I told my teachers I didn’t feel well and I wanted to go home," she says. "But they didn’t understand why I didn’t feel well." Bates’ doctors were equally skeptical, telling her she simply had anxiety. "The anxiety medications just made me feel worse. I could hardly eat anything, so I threw up a bunch of half-digested capsules."

On top of having a stomach perpetually tied in knots, Bates also faced constant scrutiny from her peers. "My tumors are most visible on my sides, so changing for gym class was really rough," she says. "The other students made fun of me."

Still, she eventually found solace in the local music scene by the time she reached high school. But that’s when the pain started to become unbearable, prompting Bates to take action. "I don’t like going to the doctor," she says, "but I needed to find out what was wrong. So I booked the appointment to get scanned."

#2: Don’t let the dark win

Neurofibromatosis tumors are usually benign, but can occasionally become cancerous. That’s why Bates’ doctors subjected her to all kinds of scans. The good news: No cancer. The bad news? There wasn’t much the doctors could do about what they did find.

The scans revealed a large tumor inside Bates’ abdomen that encases several of her arteries and veins, causes her kidneys to be malrotated, and displaces her pancreas and duodenum by twisting them around her body. Bates’ doctors determined the tumor was the chief culprit of her chronic pain. But because the tumor was benign, her immediate treatment options were limited.

The docs searched for clinical trials to study the effectiveness of chemotherapy for treating benign neurofibromatosis tumors, but warned Bates it could take a while for her to join one. In the meantime, they offered to put her on pain meds. She refused. "I just didn’t want to deal with another thing," she says. "I could barely handle food, so why give myself something else my body couldn’t take?"

Almost two years went by before Bates could start a trial, which coincided with high school graduation and a post-grad position at a restaurant in town. Unfortunately, she had to put the job on hold—as well as everything else in her life. Her daily chemo regimen was so aggressive that her schedule left little time for food, friends, or her beloved music. "I puked every day," Bates says. "I was literally poisoning myself, which made it hard to take my medicine. It’s so hard on your brain to force yourself to do that."

Bates says she was miserable all day long, became "semi-human" by night, and then went to bed knowing the next morning would bring the same pain all over again. Even worse, the trial was scheduled to last for two years. The vicious cycle was hell on Bates’ psyche—"I definitely struggled with depression," she says—but she knew she had to keep her head up. Because what other option was there?

"I had to keep telling myself that there was nothing I could do to change the situation," says Bates. "I allowed myself to have angry outbursts now and then, but it wasn’t going to do me any good to be angry all the time." So, she chose twisted humor as a backup coping mechanism. "Making fun of things and being self-deprecating really helped a lot. I’d post online statuses like, 'All right, time to wake up and go puke!'"

#3: Keep searching for a solution

Twenty-two months passed before Bates eventually pulled out of the trial. Despite her positive demeanor, her tumors weren’t shrinking at the rate doctors expected. Her ability to eat had also disappeared—along with her body. Weighing in at just 75 pounds at the end of her trial, doctors declared her failure to thrive. "I couldn’t even tolerate water," she says.

Doctors soon placed Bates with a nasoduodenal (ND) feeding tube, but relief would have to wait. "They started me on this fake formula that not only clogged my tube all the time but also left me super bloated," she says. "I looked pregnant!"

Frustrated but determined to find a real formula, Bates searched the chronic illness community on Instagram—where she had since found online friends to replace the ones that bailed when she started chemo—for a viable solution. She was delighted to find Kate Farms.

"As soon as I started on Kate Farms, my bloating was nonexistent," says Bates. Better yet, she was finally able to get out of bed and see the light of day. "I was so malnourished that I couldn’t do anything. That changed once I got real nutrition."

She’s even regained some of the weight she lost. One year after choosing Kate Farms, she’s up to 90 pounds, with her sights set on 115. "It’s still a fight to maintain my weight," she says, "but I’m stable."

Bates no longer has to rely on her feeding tube, and now that she’s healed from the recent port surgery that helped boost her hydration, she hasn’t had to take any pain meds. "The tumors are so much more bearable," she says. "I have hope that I can live a normal life someday."

She’s on her way. The once-and-future concert fiend recently spent her Fourth of July watching local bands shred while dancing around sparklers. "I’m the most human I’ve been in years."

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