Lying in an ambulance last October, Lindsey Surette never felt so nauseous in her life.
“I’m gonna throw up on these people,” Surette thought to herself during the trip from Quinnipiac health services to Yale University Hospital.
Surette threw up more than 40 times in her room Friday night knowing exactly the cause. This wasn’t the first time, and it wouldn’t be the last.
At eight years old, Surette was diagnosed with Cyclic Vomiting Syndrome. CVS contains episodes of nausea and vomiting that last for hours, and sometimes even days.
Surette was one of the first 200 known cases of CVS. During this particular cycle in October, Surette never felt so alone, especially without her family by her side.
After missing two labs during her last cycle in October, university officials advised Surette to leave Quinnipiac.
“I was told to go to a school for students with disabilities or take classes at an online college,” she said.
Surette completely ignored this counsel.
Before coming to Quinnipiac, Surette signed a contract for the 504 plan, which falls under the Rehabilitation Act and Americans with Disabilities Act. This plan specifies that no one with a disability can be excluded from federally funded programs. Students protected include those with physical impairments, asthma, allergies, diabetes, learning problems and illness, like CVS. Surette is now re-taking the lab she was forced to withdraw from last semester.
When first diagnosed as a child, Surette found herself in the hospital every two weeks. Surette remembers leaving the hospital with a feeding tube after her first few trips. She was too scared to eat afterward–believing she would have another episode. She finds that with age, her episodes are less common and the recovery process is easier because she knows what to expect.
Surette moved towns in seventh grade, thinking a change in location would make her feel better, but it didn’t work. She saw homeopathic doctors and tried natural remedies and acupuncture, but nothing helped ease her nausea.
In eighth grade, Surette was even pulled from one of her classes because of attendance, but her grades never wavered.
“I went to a Catholic school and they were unforgiving about it,” Surette said. “They didn’t understand it, and thought I was making it up.”
While CVS plays a significant role in Surette’s life, she doesn’t let the illness define her. Since the age of three, Surette has danced competitively. She did well in competitions despite her sickness.
“I don’t let my illness be my shadow,” she said. “I don’t let it limit what I want to do.”
Suitemate Meghan Connelly recognized Surette’s strength, especially during her last episode in October.
“She never got upset about it,” Connelly said. “She never took advantage of it. She never asked us to do anything for her. She always tried to get better. If she needed water, she got it herself.”
Mariel Sable also lives with Surette and thinks it took some time for her to feel comfortable about her illness to the rest of the suite.
“She took care of herself a lot,” Sable said. “Now we can recognize what will send her into an episode.”
Surette counts on her family’s support when she needs them. She mentioned that her mother never left her side at the hospital as a child.
“When I was sick here, three of my uncles were already on their way without telling anyone,” Surette said.
Prior to her stay at the hospital last October, Surette never went on her own. This proved difficult and slightly frustrating for her because she needed to re-explain her illness to the doctors. Due to the rarity of her illness, they weren’t sure what medication to give her. After consulting with her doctors in Boston, Surette was treated properly.
Surette is an advocate for CVS and focuses her attention on her non-profit organization, Hope Floats Inc. She started it a year and a half ago on her own and proposed it to the children’s department at Tufts Medical Center in Boston.
When she’s in the hospital, Surette needs to remain active to take her mind off her illness. Surette hopes to create new ways to occupy her time, as well as other patients her age. While the kids play area satisfied her needs as a child, she has since outgrown it. Surette credits her laptop, among other technology, to pass the time during her stay at the hospital.
“It was important to be able to stay connected with friends, so I wouldn’t feel so isolated,” she said.
The first fundraiser planned for Hope Floats Inc. is Connect 2 Cure set for this summer. Connect 2 Cure will raise money for laptops, which should help patients remain in close contact with friends and family while in the hospital.
“I don’t want to look at [CVS] as a negative thing anymore,” Surette said. “I’ve made my best friends in the hospital. Seeing them overcome their struggles has helped me with my own.”
Photo credit: Ilya Spektor