By JONAS MILLER
Features Editor
It was a rainy day. A dull grey illuminated the campus. We sat on her bed, legs cross, and I realized in that moment I didn’t know anything about her.
Marlene Eckert stared out the droplet-covered window as she finished her plea.
“24,500, I’m telling you that’s what it is,” she said as the over-enthusiastic Price is Right contestant bet on the current prize.
She told me she watched the show with her dad as a kid, and the trend stuck with her into college.
“I’m 80 on the inside,” she joked. “I have no hobbies,” something I knew to be false.
“That’s a lie,” she blurted out. “My favorite hobby is eating.” That one was true.
I met Marlee on a trip to Yankee Stadium freshman year. We shared a bucket of chicken the size of her head, and have been friends ever since.
As we sat a poster of Blake Lively stared at us.
“Scandalous, isn’t it?” she said as she noticed me observing one of several wall decorations that were hung.
It was quiet, especially so after she asked me to shut the window.
“Cold?” came out of my mouth with a slight chuckle.
“Always,” she shot back.
A commercial came on, and she took the break in programming to retrieve her pill container from the desk. After she casually popped two into her mouth, she dumped the rest that needed to be taken that day into her palm.
“They’re a mix of vitamins and antibiotics,” she said.
After a short struggle through the math that went into counting, she told me that she takes around 30 different pills every day.
Now was the time to ask.
“So when were you diagnosed with Cystic Fibrosis?” trickled out with an unfortunately obvious hesitation.
“Three months after I was born,” she responded. “I had acid reflux when I was born, and it turns out that wasn’t the only problem.”
Cystic Fibrosis is a rare, inherited lung disorder that damages and hinders the function of the lungs and digestive system. Although there is no known cure, various treatments have been found to help.
When the disease was first documented, the life expectancy was bleak, regardless of treatment. 30 was considered hopeful, and 35 was unheard of. Now, because of advances in research and technology, 40 to 50 is the new expectation.
“It was never a problem when I was a kid,” she said. “My dad always made sure that my treatments got done.”
Until very recently, Eckert would do two treatments a day, lasting an hour and a half each. When she was a kid, her dad dawned a percussion tool made of a soft rubber, and hit her back in specific spots in an attempt to loosen and dislodge the mucus within her lungs.
Now more self-sufficient, Eckert puts on a special vest three times a day, for a total of four and a half hours of treatment. The vest connects to a machine that pumps air into it, shakes the vest, and in turn Eckert, with the same goal as the pounding in mind.
She checked in on the final showcase betting, then turned back to the conversation.
“I never get sick of explaining it (Cystic Fibrosis),” she told me. “A lot of people know nothing it about it, so I enjoy educating them.”
This is no coincidence, as Eckert is currently attending The College of Saint Rose in her pursuit of a degree in Childhood Special Education, with a concentration in English.
“I’ve always wanted to be a teacher,” Eckert said. “I want to be in charge of something; I want to change lives. Plus, I can make anything fun.”
I knew that, but something about hearing her say it reinforced how factual it actually was.
“So when were you diagnosed with Diabetes?,” bringing the mood back to where it started, grey like the weather.
“Second grade, they told me I had Type-1 diabetes. Not the fat people kind,” she joked, although there was more sadness than laughter in her voice.
“Back then I didn’t think it was that bad,” she added. “I already had one thing wrong with me, so what was one more?”
Also referred to as Juvenile Diabetes, the disease damages pancreatic cells and prevents them from producing insulin, which regulates blood glucose levels inside the body.
Eckert wears an insulin pump on her back, and a sensor on her stomach. They act together and separately, as the sensor tests her blood sugar every five minutes, while the pump can be controlled by her, also responding to the sensor telling it that Eckert’s insulin levels are lower than they should be.
“It never really affected me in school,” she said. “I could still run the mile just like everybody else.”
“Did having two potentially fatal diseases affect you socially?”
“Nobody really knew I had CF, they just knew I went to the nurse, a lot,” she chuckled. “When I got to high school, my lungs got worse,” she stopped to catch her breath, “so no more mile.”
“When I got to college though,” she paused and asked if it was okay to swear, “Shit hit the fan.”
“There’s always something else to do,” she said after I asked her if school makes doing her treatments difficult.
Listing off friends, homework, eating, and the occasional partying, it became increasingly clear to me that she had so much more on her plate than most students. Being confined to her bed for an hour and a half three times a day doesn’t affect her socially, but she did note how difficult it is to write while her vest shakes her body.
“My friends are super supportive and understanding,” Eckert said.
Marisa Benson, also a junior, has known Eckert since the two were freshmen.
“We met at an ice cream social in the Interfaith Sanctuary,” Benson said. “Marlee didn’t know it was about Jesus, and I didn’t know there would be ice cream. We’ve been friends ever since.”
Benson said that her friend is always happy and outgoing, and added that she Eckert has been an invaluable education resource to her.
“I’ve learned so much from Marlee,” Benson said. ”She’s given me a lot of perspective.”
Recently, Benson and several other friends of Eckert went to visit her in the hospital. Eckert missed three weeks of school, one of which was at Albany Med, and the other two at home.
“My lung functions were getting worse over the course of two different doctors appointments,” Eckert said. “They’re better now, back to their baseline.”
She began to tell me about her family’s social worker, John Nash, whom her and her family met fourteen years ago.
Nash has worked with the family over the years, helping them deal with Eckert’s illnesses.
“Marlene and her family have faced adversity with a high degree of resilience,” Nash said. “They face the challenges of life and learn from them each and everyday.”
Nash’s position involves understanding and assessing how well people are coping and managing their illness. He provides moral support and advice on how to handle life.
We don’t know where it came from,” Eckert said about the genes containing the sickness.
“I think about it a lot,” she continued. “Why am I bothering?”
Silence.
“I can’t be negative about it,” Eckert added.
A positive attitude helps Eckert carry on through her every day struggles. She said she likes homework, which is good since she spends so much time in her room.
“People don’t really understand,” Eckert said. “The alone time doesn’t bother me.”
She asked for a blanket, covered up with it, and let out a sigh of relief and relaxation.
“Ah, this is the life,” she said as she buried herself even deeper in the blanket.
“In the grand scheme of things, I’m pretty lucky,” she added as the end credits of The Price is Right rolled across the screen.
She’s not wrong; she is very lucky. She loves homework, she never misses class, and she’s got a strong group of friends. Marlee Eckert is one of the luckiest people in the world, because somewhere deep inside of her, there is something that many people live their entire lives without.
It’s invisible to all the doctors, all of the tests, and all of the research. Deep within Marlee Eckert, there is hope. Hope for another day, another memory, and another breath.
