Ninth-grade Katie Wiest knew something was horribly wrong. She couldn’t run a few feet without doubling up in pain. Fatigue rocked her body in waves. The world looked blurry, and why was everyone moving so weirdly all around her?
“I feel bad,” she gasped to her P.E. teacher, clutching her side. “I can’t run this.”
She looked up into his eyes, and only saw suspicion. This is another girl, he was undoubtedly thinking, another girl acting frail and sick to get out of PE. Next thing she’ll tell me is she’s suffering from her monthly menstrual migraine.
But this pain was abnormal. Some mornings, she couldn’t find the strength to get out of bed. To even move.
Bridget Neff (‘22) would come into class every day, see Wiest’s seat, empty again, and feel a hollow throb in her chest. She missed her best friend.
Lying in bed, Wiest would text Neff about the ongoing pain, about how she had no idea what was going on.
People couldn’t understand why she was always missing school, why this was happening. “You don’t look sick,” they said.
But younger Katie knew herself and her body, and knew this sudden onslaught of dizziness, this continuous feeling of wanting to faint or throw up, was nothing normal.
Here’s a quick scan of Katie Wiest: a senior at Amador, real name’s Kathryn but everyone’s called her Katie as early as she can remember, so she’s Katie forever; there’s platinum blonde hair tumbling down her back in waves, sparkly Saturn earrings dangling from both ears, piercing light blue eyes, and a slight jaunt of the chin, tipped upwards in slight defiance, daring you, like “I’m nice but you don’t wanna try and mess with me.”
And she has a chronic illness.
Late in her sophomore year, Wiest was diagnosed with Postural Orthostatic Tachycardia Syndrome, otherwise known as POTS. According to the Cleveland Clinic, POTS hinders blood circulation and causes lightheadedness, fainting, and rapid increases in heartbeat.
“POTS patients do not do well with gravity,” said Dr. Satish Raj, autonomic investigation unit director at the Libin Cardiovascular Institute of Alberta. “Normally, when you stand up, your heart rate automatically goes up about 10 to 15 beats per minute to increase blood pressure and blood flow and then stabilizes. In POTS, it’s at least 30 beats a minute within 10 minutes; some can be as high as 60 beats per minute. The brain jumps in to shut that down and you become faint.”
Some patients, like Wiest, can still manage to go to school, and maintain a relatively ‘normal’ lifestyle. Others are bedridden.
Wiest has the hyper-agrenergic form of POTS, where the patient’s adrenaline is, in her words, “off.” The sympathetic nervous system overworks itself, overwhelmed by abnormally high levels of the stress hormone norepinephrine, which increases heartbeat and the amount of blood pumped by the heart.
POTS tends to manifest among young women, 80% of whom make up the current global population of POTS patients. However, the disease chooses its victims at random.
Worst of all, it stays with the patient for life. No cure, no escape.
***
The medications Wiest’s doctors prescribed her weren’t working. It seemed like every few days or weeks, Wiest and her parents would pop into the doctors’ clinic, tell them the prescriptions had no effect for whatever they thought she had–misdiagnoses from serotonin shock to allergic reactions to the medicine–and the doctors would look more and more troubled.
Dazed, she followed what the doctors told her to do: all the different tests on her blood, her skin, her urine. They strapped her in for the tilt table test “like Frankenstein,” and she almost hurled from the queasiness. Worried, they said her heart rate and blood pressure jumped way out of the optimal range.
Wiest just wanted to know what was wrong with her body.
So when the doctors sat her down and finally, gently told her she had POTS, Wiest only felt relief, mixed with tentative hope.
“I was like, “ohhh, I have POTS, I’m not dying!” she remembers.
But gradually, weariness and frustration replaced that relief as the full diagnosis sank in, and she had to change her entire life routine.
Wiest now has to take approximately eighteen different medications every day. More than half are pills. There’s even medication for her medications. She has to do two days of strength training, two days of cardio exercise for heart training, and 60 minutes of daily cardio. To maintain her health, Wiest needs to intake more water and salt than the average person. Then there’s her regular pain therapy sessions, that often finish with her muscles screaming from the exertion.
It’s draining. Sometimes, she felt like giving up.
A nurse had once told Wiest she was going to get better. POTS is a chronic disease.
“They told me POTS was going to go away,” Wiest hesitates.
But?
“It doesn’t.”
When Katie Wiest stands up, she steels herself for the whispers. They keep staring at her with those eyes. Trailing her like a dark cloud, wherever she goes. It’s suffocating.
Once, when she brought her cane to school and went to buy lunch, shuffling forwards with the others in line, a student eyed her with disgust. “Hey you, with the cane, you’re faking it!” he jeered.
That was one of the first times she tried out her cane at school.
Heads swiveled in her direction. Wiest shrunk for their accusing stares. She grabbed lunch as fast as she could, hurried off, hiding her cane from view.
“He sounded like he thought there was a ‘right’ way to use a cane,” she recalls. “Like, ‘sorry I don’t have a limp?!’”
Again, at the Alameda County Fairgrounds, when she needed an assistant’s help to access the bathroom stalls, a man leered at her.
“Cripple!” he spat. The word cracked across her like a slap to the face. She left, face stinging and seeing red.
So after that, when Wiest travels in her wheelchair, she doesn’t dare stand up. She’s heard all the horror stories of people with disabilities stretching or getting up from their wheelchairs and getting attacked by angry crowds who didn’t know shit about what it was like. According to a 2021 report by the Bureau of Justice Statistics, those with disabilities are almost four times more likely than non-disabled people to experience nonfatal violent crimes, despite accounting for only 12% of the U.S. population.
In fact, Wiest feels the most vulnerable when she sits in her wheelchair, the instrument meant to balance, support, and protect her.
“I’m afraid for my life,” Wiest emphasizes, eyes grim. “If someone yells at me, I just feel bad.” She lowers her gaze. “And sometimes I don’t stand up as much as I should.”
But why do strangers seem more inclined to turn against her?
Humor me for a second, reader. Picture a regular wheelchair, with the two big wheels on both sides and sleek handles and rigid seat–who do you see sitting there?
A question posed to 2700 students in a survey, responses poured in–a bald, old man, said one. A cripple, an amputee, a grandfather, someone clutching at the last tethers of their life. In short, someone who looks the part–meets the unspoken criteria.
POTS has long been known as an “invisible disease.” Patients may appear healthy on the outside, but are suffering from indescribable, unimaginable pain inside.
Wiest likens her mobility cane and wheelchair to glasses. Glasses are used for specific activities reading or driving, and not for other things. This is the same with mobility aids: people need them for certain actions and not others. Wiest uses her cane to stand up if she’s dizzy. She needs her wheelchair if she heads outside for a long time or if she experiences more pain than usual.
“Just because I’m not using a mobility aid [in the way] you’re familiar with, doesn’t mean I’m faking it,” Wiest says.
Of all things people could do to someone with a disability, Katie Wiest hates to be infantilized. Strangers on the street often talk to her in a “baby” voice, treating her like a helpless toddler. The pity wallowed in their eyes irks her.
“It’s like, I’m fine, I’m just sitting down!” she exclaims.
Wiest has heard and experienced first-hand the whole spectrum: the derogatory ones–cripple, freak, weirdo, faker–though they’ve become less frequent. But then there’s the intentionally uplifting ones that make her feel worse.
“People say like, ‘special, unique, butterfly abilities!’” she mocks, fluttering her fingers, cheeks puffed out in frustration. “And I’m like, I’m disabled. Just say disabled!”
At Amador, the Wheelchair Foundation holds an annual Wheelchair Day event, where select students sit in wheelchairs to experience the daily reality people with disabilities live through.
Wiest herself had participated in the event during middle school, learning how to use a wheelchair and how to move around in one, never even knowing she would ever need to apply that knowledge years later for real.
She appreciates the foundation’s attempt to bring more awareness to the hardships people with wheelchairs face, but says it only strikes the tip of the iceberg.
“The whole point is to be ‘awww, look how hard it is for people in wheelchairs,’ which is kind of all [the organizers] are doing,” Wiest points out. “They didn’t talk about the systematic things that come with the wheelchair.”
Like often school campus buildings, including many of Amador’s, weren’t built with wheelchair-accessibility in mind. And those old buildings don’t need to be renovated to make it easier for wheelchair users.
Moreover, the real, past struggles of the disabled community for recognition of their rights–like getting an education at school or having sufficient hospital care–get glossed over.
Wiest herself has experienced at Amador frequent ableism, when able-bodied people discriminate or harbor social prejudices against those with disabilities.
Some teachers treated her like a lesser student once they heard about her condition; others couldn’t accept why she had to leave class for medical appointments and threw at her excessive make-up work she couldn’t complete. Once, she went to class without her wheelchair, and a teacher exclaimed: “Oh my gosh, you’re cured!”
Wiest had felt her heart plummet in that moment at the teacher’s careless remark, a harsh reminder that some people would never see her beyond her POTS.
Without addressing these important issues, Wiest believes the school’s Wheelchair Day just serves as a “weird empathy” exercise, and that doesn’t sit right with her.
That’s why Wiest is beyond grateful for her own support squad at school–her friends and boyfriend, who never judged her disability when she told them, who buy lunch for her because her wheelchair never fits in the cafeteria lines, who stand with her in solidarity and treat her without any stigma.
“I’m more comfortable being in a wheelchair or using a mobility aid if other people are with me and make it seem like it’s not a big deal, because then it doesn’t feel like it’s a big deal,” Wiest says.
Her boyfriend Brayden Cameron calls the experience “eye-opening.” Learning about Wiest’s condition and the challenges that come with it has made him a more accepting person, more aware of the struggles of those around him as opposed to focusing on what’s happening with himself.
“It’s like, ok, if this person has a disability, then that might be affecting them in a lot of ways, socially or physically or mentally, and it’s not something for somebody else to get upset about,” Cameron says.
Before getting diagnosed with POTS, school was all Wiest knew. She had all her classes planned out, knew what she was doing.
Then, when she got sick, it all fell apart.
Wiest missed a large chunk of school in her freshman year from countless doctors appointments. COVID slithered in afterwards, and her schoolwork suffered even more as classes shifted completely online.
After her diagnosis, she had to reorganize her life to manage her illness. It felt like her identity had been taken over by POTS. Yet when she brought up her pain and struggles, other people “got weird” and avoided the subject. So she stayed quiet.
But one day, Wiest got tired of hiding POTS. She decided to become more assertive and speak out about disabilities, because “in general, only disabled people are the ones who advocate for disabled people.”
So she opened up Instagram, and started regularly posting about her daily life, featuring the challenges of POTS. She updated on starting new pain medications, repeatedly experiencing ableism, and finding confidence in her own body. And if some viewers get “weird” about it?
“It’s not my job to stay silent to make people more comfortable,” Wiest declares, eyes fierce. “If you talk to someone about stuff you’re going through, they’ll respond ‘oh my gosh, I’ve had something similar happen!’ So talking about stuff allows you to find community.”
If there’s one word that describes Wiest perfectly, it’s resilient. This unflinching persistence and passion is what Cameron admires the most about his girlfriend.
“Her going through the world and telling people what’s what when she has to deal with more problems than everybody else tends to, that makes her a really tough person,” Cameron says.
But, in a way, Wiest is just like any other everyday, high school teenager. Her interests range from abstract art to adorable cats, from jamming out at rock concerts to chillaxing in the park with her squad.
Yes, she uses mobility aids. She has a chronic illness. But being a POTS patient is only one, small aspect of who she is. And now, she’s not letting her disability stop her from reaching her full potential.
So what’s in store for the future Katie Wiest?
She’ll continue to raise awareness about and advocate for people with disabilities through regular Instagram posts. She’ll go off to college and enjoy herself. And, maybe, she’ll become a neurology or pain specialist, so she can help other people like her with true empathy.
Whatever happens, Wiest knows she’ll get through it.
“I had to refigure out my life. I went through the hardest thing I could imagine myself going through,” she smiles. “I know things are gonna be ok.”
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Braeden Cameron • Apr 15, 2022 at 10:03 pm
Very cool !
Katie • Apr 15, 2022 at 9:18 pm AmadorValleyToday Pick
Thank you so much for sharing my story!