Twenty-seven pairs of eyes watch as junior Chloe Vollenweider picks up her Vera Bradley bag. They follow her as she leaves her classroom with five minutes left until the bell. She ignores her classmates’ stares. They may judge her, but they don’t know.
They don’t know that she can’t travel during passing periods because the slightest bump from another student could dislocate her shoulder. They don’t know that she has to use an elevator because stairs are bad for her reconstructed heart.
She just silently walks the lonely halls to her next class.
Having to leave her classes early is a trifle inconvenience for Chloe when compared to everything else she’s been through.
Chloe was born with a deformed heart. Her pulmonary artery was coming out of her aorta; she had two holes in her heart and she had extra muscle mass around it. Her problems called for a full heart reconstruction when she was five days old.
The next day, she had a heart attack while recovering from surgery.
The next day, she died.
She wasn’t dead for long. Twelve chest compressions later, Chloe was back.
Four years later, Chloe and her mom Melissa were watching TV together when one of the characters died.
“What happened?” Chloe asked Melissa.
“Oh, he just went to heaven,” her mother replied.
“I was there.”
“Well, remember when I died?” Chloe asked.
Melissa was shocked. No one had ever told Chloe about her death. But somehow, she knew.
“Well, I went to heaven.”
Then, for the first time, Chloe told her mom what death was like.
She told her what she remembered. She was an adult looming over her infant body, surrounded by a hue of pink. People stood all around her. Chloe felt like she knew them, like she should know them, but she didn’t. A woman approached her.
“Chloe, we don’t have much time,” the mysterious woman said. “You can stay here, or you can go back. Life will be difficult for you, but the people around you will make it okay.”
The woman embraced Chloe, and Chloe made her choice.
She walked on into life, and love.
Chloe is still walking. She hasn’t stopped since she chose life over death.
As the woman from her death predicted, it’s been a difficult journey for Chloe. Her entire life, she’s struggled with various health problems. As she got older, Chloe and her parents began to realize that her initial heart issues were just the beginning of her ailments.
“I had a lot of health problems that we could never really find an explanation for,” Chloe said.
Chloe began to get her explanations as she got older.
When she was seven, doctors told her parents that her reconstructed heart will need a valve replacement every 15 years for the rest of her life. Her next open-heart surgery is scheduled to happen in the next year or two.
When she was nine, an MRI revealed that she had a brain cyst resting right next to her optic nerve. The cyst, always fluctuating in size, could blind her should it grow to a certain size. If it threatens to grow to that size, Chloe would have to have potentially-life-threatening brain surgery.
When she was 14, a geneticist diagnosed her with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder that causes her joints to pop out of their sockets easily. Before the diagnosis, she had always fractured her bones easily. She would walk around for days at a time with her shoulders hanging out their sockets. She lived in constant pain — she says she’s never had a day without pain—and she had no idea why. The day she finally got the diagnosis was one of the “happiest days of her life.”
“If I could put a name on it, I had a reason behind it,” Chloe said. “I had just lived with so many symptoms my whole life, and it was just so nice to have a way to connect them.”
Soon after she was diagnosed with EDS, she started to take the necessary measures to deal with it. She began going to weekly physical and occupational therapy sessions, where she does the type of repetitive exercises that are normally so painful to her, like curling her arms with exercise bands. She will be doing these type of exercises for the rest of her life. When high school started, Chloe quickly realized that walking through the halls was hazardous to someone with EDS, and she began leaving all of her classes five minutes early to avoid contact in the halls. Now, she can be seen wearing pink medical tape on the insides of her arms, designed to keep her elbows from dislocating.
Chloe hasn’t let EDS get to her.
“I mean, you can’t cure EDS, but you can live with it,” Chloe said. “It’s so much better than the alternative: being in a wheelchair, or being paralyzed, or things that could come from me having a worse situation than I’m in now.”
Her life has always been tough, but Chloe has developed outlets to help her deal with the struggles she faces.
Theater has helped her release the emotions she suppresses normally and has given her a close family away from home that she can rely on.
Working on the teen advisory board at Children’s Mercy, where she helps raise money for hospital projects, has allowed her to put her issues in perspective. Not only does Chloe get to give back to the place that has become her home away from home, but she gets to hear stories that help her to appreciate what she has.
“I kind of live by the rule of thumb that if everybody put their problems on a table you’d probably take yours back, whenever you see what other people are dealing with,” Chloe says.
Chloe’s family has also helped her through her problems. Her parents, Melissa and Doug Vollenweider, have been to every cardiology appointment Chloe has ever had, just in case she gets the news she dreads: that she has to have her valve replacement. They’ve always encouraged Chloe to live her life to the fullest.
“We don’t really wait on things,” Doug said. “If we have an opportunity for either her on her own, or as a family, to experience something, we’re going to do it now.”
Melissa and Doug have worked very hard to keep their family optimistic, even when Doug was laid off from his job two years ago. In the eight months that Doug was unemployed, Chloe’s six-year-old sister, Gigi, began her own physical therapy, adding on to the family’s mounting medical bills. To make matters worse, Doug’s job search was limited only to jobs that offered the top-notch health insurance packages that Chloe needed.
Even then, Doug and Melissa stayed confident and optimistic.
Their optimism has been passed on to Chloe, who never lets her problems get her down. Chloe’s optimism can also be tied to the memories she has of her death.
Those memories have kept her going.
“I’m not afraid of death,” Chloe says. “I’m afraid of dying and not being with the people I love. But I’m not afraid of death itself.”
Her bravery comes in handy, because Chloe faces the possibility of death in her near future. Either of her two surgeries—the inevitable valve replacement and the unlikely, but still possible, brain surgery—that she might have to have could kill her.
But she’s fine with that. She knows what awaits her on the other side. For now, she can just hope that her next valve replacement goes well. Or that her cyst doesn’t grow. Or that if her cyst does grow, then that surgery goes well.
One of those things could go wrong, but until she meets death, she’ll keep walking.
She just might have to start walking a few minutes early.