It began in the 9th grade. English with Miss Ramsey. Joey admits he was a goody goody. He thought Kerri was a snobby brat. She got them sent out into the hall for talking. Joey spent the next three years asking her out. After they graduated, for some reason, she said yes.
“She didn’t care about anything. She just did her own thing regardless of what people said. She was like a little rebel, a little rebel child. And then I actually got to know her and I liked everything about her.”
That was the beginning.
Joey remembers the first concert they went to. 311, a band from Omaha, Nebraska. Kerri was sick. She didn’t get better for about a year.
When they were 19, the couple went on an overseas trip with friends. London. Paris. Fun.
But something was up.
Kerri was dashing off after meals so often that her friends started following her to the bathroom — feared she was bulimic.
A decade would pass before she’d discover what was making her sick: celiac disease.
Tuesday in the ER
On an unsuspecting Tuesday afternoon, Kerri decides to go to the doctor for what she thinks are “bug bites” on her legs. They’ve been there for a month and are starting to ache. She arrives at Urgent Care at 2pm.
Kerri is poked and prodded. Doctors are mystified by the marks which don’t match anything they’re familiar with.
Blood tests come back suggestive of a blood clot. Kerri is sent to the ER, arriving around 5pm.
A tired and hungry Joey arrives after work, watching on as Kerri goes through the medical wringer, in a process they’ve been through many times before.
In following weeks, Kerri sees a dermatologist and a rheumatologist for further investigation. Neither are sure what the marks are, but believe it’s autoimmune related.
“The rashes, fever and fatigue still come and go and I still have constant pain in my legs. But that has been my norm for the past 2 years.”
This is life with an autoimmune disease. Lots of symptoms, much shrugging of medical shoulders, and little relief.
Skating. Is. Everything.
The clouds are pink candy floss in the sky. Dragonflies flick overhead. Bug spray is on the breeze. Summer in Hampton Roads.
Kerri and Joey are skating in a friend’s backyard as the sun sets.
Arcing through the air, taking spills, her board flying, Kerri seems fearless. But for a long time she was too weak, and her health too unpredictable, to do this at all.
You look good, you can’t be that sick.
At least it’s not cancer.
Kerri has heard it all.
It’s like a slap in the face, she says, because celiac disease is an invisible illness.
No, you can’t see the wall of her small intestine attacking itself on exposure to gluten. You can’t see the hernia she developed from vomiting. Only she can feel the lead weight in her bones, that feels like she’s carrying around sandbags. It’s true, Kerri is one of the healthiest looking sick people you’ll ever meet.
But celiac disease has changed her life 100 per cent.
On a Sunday night Kerri and Joey are saltwater fishing as the tide comes in. The water is warm and before long it’s waist high.
Being sick has made Kerri seize those moments when she feels semi okay: there’s no point waiting until you feel great, because that moment may never come. So when she’s too tired or too sick to skate, she and Joey go to the beach.
Sometimes it’s all Kerri can do to sit on the sand.
This small space
Sometimes it feels like Kerri’s life is moving in ever decreasing circles, as though her entire existence unfolds in one small space or another. The one-room converted garage she and Joey had to move into when they could no longer afford their apartment. The real estate agency where she’s now medically cleared to work as a secretary 15 hours a week. The endless doctors’ waiting rooms.
The calendar has filled up with medical appointments, the phone with lists of doctors. But Kerri’s life has been a great exiting. Friends have gone — who wants to persist with someone who might have to cancel at the last moment? She couldn’t work for two years before she was diagnosed.
“It was just the puking, being in the bathroom, I couldn’t get it to stop. I was either sleeping or I was in the bathroom, that was my life. Sometimes I was sleeping in the bathroom. Because it was that bad and I was just so weak and tired that I couldn’t move. There’s times when I have to have a chair in the shower just to be able to sit in there because I just have nothing left in my body.”
Even now, she’s never sure whether she will be able to keep her job. The bouts of illness can come out of nowhere and flatten her for days, or months. It could be something as small as a breadcrumb, or a trace of gluten on Joey’s lips.
Food is no joke
Despite a near-liquid diet of smoothies and apple sauce, gluten is hard to avoid completely. On a rare dinner out Kerri can’t even order the iced tea because the syrup contains gluten. Joey tries not to eat in front of her, because everything he loves to eat, she does too.
Kerri and Joey’s relationship isn’t the touchy feely kind. You’ll rarely see them make physical contact.
But at 3am when Kerri is sleepless and her legs are giving her trouble, Joey will get in his car, half asleep, and drive to Seven Eleven to bring her an orange juice.
When Kerri found out she couldn’t have children — infertility can be associated with celiac disease — she told Joey to leave her, find someone who could give him a family.
Joey ignored it. Not because he doesn’t want children.
“She needs me and I need her. It is what it is,” he says.
With the couple living on Joey’s grave digging wage and Kerri’s part-time secretarial work, money is tight. There are doctors’ bills, prescriptions, two dogs to feed.
“I guess when we first started dating I thought we would eventually get a house, have a family,” Kerri reflects. “And now that I’ve realized that’s probably never going to happen, what I think I’ve told myself is to adjust accordingly.”
“There’s no yes I want to do this, no I don’t,” says Joey “It’s I’m going to do this because I have to.”
The journey continues
Live, love, laugh. The words are engraved on Kerri’s brown wrist in black ink. It’s something her mother used to say. She died from an asthma attack when Kerri was 23, six months to the day after Kerri lost her father to a heart attack. Joey’s dad is gone too — when he was seven years old, from an eye cancer that spread.
But Kerri intends to keep following her mother’s advice.
“I guess I would like to think that she’s proud. I mean when I was going through the doctors I had to fight for myself, I had to keep switching doctors and prove to them that something was wrong until they finally found it. So I feel like she would be proud that I stood up for myself and found a way to make things work and make things happen.”
As we made this project, Kerri posted to instagram. Connect with her @skatelove757.