And when “my brain doesn’t work,” writes Lily Pederson, “it feels like I am trying to think through goopy mud.”
The Northwestern Middle School student says she tends to “stink up” in her attempts to write fantasy.
But the 12-year-old’s first-person account of what it’s like to live with Postural Orthostatic Tachycardia Syndrome (POTS) is — in the vernacular of a middle school student — stinking awesome.
With a boost from Thrivent Financial, the account she wrote and younger sister Kate illustrated for the Clark County Young Author’s has been published and, to date, has raised more than $2,250 for POTS research.
It all began just after Lily, the older daughter of Wittenberg University biology professor Cathy Pederson, turned 10.
“I used to be a carefree kid,” she writes. She and Kate “would run, ride scooters, blow bubbles, catch bugs and … pretend that we were dinosaurs and build nests.”
Then came an energy-sapping bout of mononucleosis.
“She’s not been right since that time,” said her mother, whose background in biology and experience as head of the university’s health sciences program led her to search for a solid diagnosis.
Although mononucleosis likely was involved, to Cathy Pederson, it didn’t entirely explain what she saw happening to her daughter.
During weeks in which there often were multiple appointments with different doctors, the results kept coming back “normal, normal, normal,” she said, while Lily “was suffering and was getting worse.”
Cathy Pederson dismissed psychological explanations because of Lily’s can-do personality expressed in the sense of humor in which she describes the results of the many visits: “I have given enough blood to fill a baby sheep.”
After months of frustration, Cathy Pederson was ecstatic when, during a single visit and after just two tests, a rheumatologist at Cincinnati Children’s Hospital “nailed it.”
He had Lily stand on a stool, and in 10 minutes, all the symptoms she’d had — the pain in the stomach, the hot flashes, and the porcupine quills in the legs — appeared.
Quipped Lily in a half-hearted complaint: “I felt bad, and my mother was partying.”
POTS involves a malfunction of the autonomic nervous system that, among other things, causes the veins in the lower body to narrow when we stand so all the blood doesn’t simply rush to our feet.
In POTS patients, “the veins are really floppy,” Cathy Pederson said, and don’t do that job.
Fundraising is under way for a new study that hopes to determine whether POTS might be like arthritis or rheumatoid arthritis — a so-called autoimmune disease in which the body attacks itself.
Through it all, Lily’s sister, Kate, 10, has been nothing but supportive.
The girls were born in separate orphanages in Central China — Lily in 2003, Kate two years later. Cathy Pederson had decided on adoption after she had “waited long enough for that (right) guy, and he didn’t show up.”
In contrast to the verbal, forceful and outgoing Lily, who hopes to be a green energy engineer when she grows up, Kate is quiet and has an interest in fashion design and a face that, in full smile, beams like a gentle sunflower.
She often fetches ice packs when pain strikes her sister’s legs, makes sure Lily has plenty of water and helps her make the painful walk to the bathroom.
When their mother called Kate “tremendously helpful,” the sisters exchanged a swift, smacking high-five with matching smiles.
“She’s so empathetic,” Cathy Pedersen continued. “She really captures Lily’s feelings … in her artwork.”
Kate’s illustrations include a medal of the sort Lily wrote she should be awarded for seeing the most doctors; a drawing of an elephant sitting on Lily as bees sting her legs; and a cartoon balloon above a reclining Lily that lists things POTS makes her miss: Birthday parties, ice skating, fireworks, school field trips and school.
Lily has missed a lot of school, including 28 of the last 45 days of this past academic year. She usually spends her off days on her grandparents’ couch in the home they moved to across the road to help their own daughter.
Cathy Pederson said Lily is “very independent” in keeping up with her studies. To the suggestion that the distraction helps, Lily says she has other motivations.
“I don’t want to be 30 years old and sitting here (on the couch), eating potato chips and going ‘pew, pew, pew,’ ” she said, mimicking the sound of a video game control firing.
Her future is uncertain. The newly adjusted regime that includes 20 pills a day and high water intake to try to maintain her blood pressure has yet to show significant results.
She is participating in a research study on children with the syndrome, and her mother suspects that, in addition to having POTS, Lily may have mitochondrial disease — a disease of the organelles in cells that help to process food energy for the body’s use.
Along the way, they have learned lessons, bad and good.
Lily has learned what it’s like to be in her wheelchair, Blue Lightning, and endure stares that make her feel “like an animal in a cage being transferred to a different zoo for help.”
Cathy Pederson has learned that, when unable to help, doctors have a tendency to withdraw from a patient like Lily “because they can’t do anything for her.”
But all have been grateful to the Northwestern Local School District for its accommodations for Lily, the doctors who have helped along the way, Thrivent Financial for doing the initial printing of the book and local Thrivent representative Matt Bueher, who donated $500 of his own money to print 175 more.
Just as they have high hopes for Lily’s new doctor at Nationwide Children’s Hospital in Columbus, they hope Lily and Kate’s book helps to raise awareness about POTS.
Estimated to effect 1 percent of all children, Cathy Pederson suspects many cases are misdiagnosed because the children’s parents may not be knowledgeable about biology or as pushy as she is.
As for Lily, she treasures those days “when the chains loosen a little” and she can “stand a little straighter,” play with friends and “giggle with my sister.”
And she tries to be patient.
“I wait for the buttercups and apple blossoms to open in the spring as a sign of new life. I wait for the seeds to grow into crops and hope for a good harvest, never knowing what next year will bring.”
“One day I will break free,” her book concludes. “Until then, I am a survivor.”
For information about obtaining her book, for which donations are accepted, send an email to lilyslifewithpots@gmail.com.
To learn more about POTS, go to www.dysautonomiainternational.com.
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