Through normalcy and resilience, Josie Nordman has persevered through cystic fibrosis

    Josie Nordman is pictured with her pony, Loki, over this past spring break. Josie's oxygen concentrator is in the saddle bag, and the IV antibiotic infusing is in Josie's pocket. "It shows me doing the thing I love most in spite of the circumstances," Nordman says. Photo courtesy of Josie Nordman.

    “I’m good.”

    That is the standard, cheerful reply Communication senior Corey Moss hears each time he asks fellow theater major and sophomore Josie Nordman how she is doing. For most, the phrase might seem like an innocuous remark. But coming from Nordman, who has now been waiting for a lung transplant for more than five months, it means so much more. 

    At four months old, Nordman was diagnosed with cystic fibrosis, a chronic condition which causes her body to secrete thick, sticky mucus that clogs the lungs, potentially leading to life-threatening lung infections. 

    Nordman always thought the day she would need a lung transplant would come after she finished college, but it arrived earlier than she expected – in December last year, when her lung function dropped to 22 percent. Lung function is generally determined by the forced expired volume after one second of blowing out- the volume of air that a person can blow out in one single second after a full inhalation. This measures how well the large and medium sized airways are functioning.  A healthy person would receive more than 80 percent on the measured test, and severe lung disease occurs at 35 percent. At 30 percent, median mortality within two years is more than 50 percent.

    Nordman’s health issues catapulted her into the Northwestern University spotlight during Winter Quarter, when a $10,000 Indiegogo fundraiser set up by her former theater instructor Eleanor Davis went viral. According to the Indiegogo webpage, Davis started the fundraiser after it turned out that Nordman needed a transplant, and that the cost of the procedure was, as Davis said, "astronomical" - amounting to between $50,000 and $75,000 after insurance coverage.

    To help raise money, students trekked down to Cheesie’s on Davis Street to participate in a fundraiser. Audience members streaming out of Theater and Interpretation Center performances dropped coins and dollar bills into fundraising buckets. Members of the Greek community braved the cold to sell white wristbands with her name etched on them in Northwestern purple. Moss put up a musical theater show and a charity walk/run this year, raising about $1,100. The Indiegogo fundraiser ended on May 7 at $47,000, surpassing its initial goal by more than fourfold, 

    Yet even with the uncertainty surrounding her transplant and frequent hospital check-ins, Nordman tried to be a normal student in Winter Quarter. Life was about more than just the lung transplant. It was also about the anthropology and theater classes she was taking as a part-time student, about producing ECCLESIAZUSAE!, a theater production by the Rock last week, being involved as a Chi Omega member and hanging out with the equestrian team. Her experience winter quarter is reflective of how she does not let her difficulties define her. Rather, she strives to be the typical busy and involved Northwestern student.

    Her medical condition makes accomplishing this goal much more difficult. But what is behind her cheerful "I'm good" is that she’s just trying to experience some level of normalcy. And being a Northwestern student and participating in college life gives her that sense of normality, and allows her to persevere every day through extremely difficult conditions.  

    Putting up a fight

    Josie Nordman is curled up on a couch in her Evanston apartment on a chilly February afternoon, a purple fleece thrown over her small frame. She is visibly exhausted after a long day, coughing between sentences and noticeably becoming fatigued as our conversation wears on. The evening sun streaming through the windows and her lilac shirt makes her seem paler than she actually is. She bursts into a violent fit of coughing when smoke from her roommate’s cooking wafts over, but she is still chirpy, her eyes sparkling as she speaks. 

    According to the Cystic Fibrosis Foundation, cystic fibrosis sufferers display symptoms like persistent coughing, shortness of breath, frequent lung infections and poor growth or weight gain despite a normal appetite. Lung function usually starts declining in childhood, leading to serious breathing problems, according to the American Lung Association. The most common cause of death for cystic fibrosis sufferers is respiratory failure, the Association says, and sufferers are also more susceptible to diabetes and osteoporosis. The predicted median age of survival for a cystic fibrosis sufferer is in the late 30s.

    Cystic fibrosis left Nordman’s childhood mostly unscathed; her swimming and soccer were only interrupted by hour-long breathing treatments twice daily and a small amount of medication. However, her first real test came when she was 11, when her condition began deteriorating more quickly, requiring more frequent and extended hospital visits. This was something totally new to her at the time.

    “It was a really big deal to me then and I didn’t really understand what was going on,” Nordman said. “Even three days in hospital felt like a really a long time.” But Honey, a palomino horse that she received from Make-A-Wish Foundation at that age, motivated through that difficult period.

    As she entered middle school and high school, she faced more challenges, such as getting rejected from the high school soccer team because of her condition. One good thing that came out of it was that she auditioned for theater instead, therefore finding another passion. Honey – who had been a source of joy for her for several years – also passed away a few years ago from a neurological disease called equine protozoal myenloencephalitis, or EPM.

    Today, as a college student, Nordman has to sit out activities that are too physically strenuous during theater classes, something she admits is frustrating. Since September 2012, she has also had to stop riding horses – but not without putting up a fight, her friend and equestrian team member Seema Ghelani said. 

    Ghelani’s first impression of Nordman was seeing her at her first horse show at Northwestern as a freshman in Fall Quarter, coughing and struggling to breathe at times while riding. Nordman continued to find way to keep riding despite having to take breaks during practices, such as by bringing her oxygen concentrator in her saddle bag.

    “Having so much extra weight on the horse would probably make it harder to balance and control it,” Ghelani said. 

    Even during Winter Quarter, she was making plans to teach Loki, the horse she currently owns, to pull her along in a wagon.

    Powered by passion 

    "She was a little shy, but we were both excited to be at the start of something new."

    That’s how Communication freshman and ECCLESIAZUSAE! director Aaron Simon Gross described his first impression of Nordman, his producer, whom he has worked closely with since Fall Quarter. Yet he says that it is impossible to tell from Nordman’s level of energy and dedication that she was facing such a substantial life hurdle. According to Gross, some in the theater community were even surprised when they heard the news about Nordman’s fundraiser.  

    “Josie is always there to do what she needs to do for the show, and she’s always asking what she can do to help me,” Gross said.  “Josie comes across as pretty selfless, but her public image is the opposite of that. She’s certainly not helpless.”

    She is similarly committed to the exec board of the equestrian team where she served this academic year as lesson coordinator, and will be co-organizing the second Northwestern-hosted horse show next year.


"Josie was responsible for sending schedules out and making sure there was a driver and a van to
 get everyone to go for their lessons," Netta Lee-Lax, former president of the equestrian team, said. "She was doing it all even while she was in hospital, and she never missed a session."

    Ghelani believes that Nordman’s passion for what she does, coupled by the support from those around her, is what keeps Nordman going. In a Facebook post on March 5, Nordman’s mother said that her daughter “misses her friends at school and her school in general too much” to stay at home – just three days after she had been discharged from hospital.  During one of my conversations with her, Nordman said that the reason that she chose to enroll in classes at all in Winter Quarter was because of the fact that she wanted to be around her friends in school. 

    Moss believes that her continued involvement at Northwestern is a testament to her inner resilience. “We met up a few weeks ago and she was telling me how the average waiting time for a lung transplant is 5 months, and she’s been waiting for more than that,” he said. “People don’t really realize how grave her situation is and how much resilience it takes for her to choose to keep going to school, rather than go home and just have her parents take care of her.”

    What also amazes Moss is the positive attitude she carries through this uncertainty. “She continues to laugh and joke around with me, and it’s completely unexpected,” he said.

    Pushing on through every minute

    For many students, Nordman’s health issue is a quick donation, a Facebook status or some sign of support. But for Josie, her struggle to breathe and her hiatus from riding is a reality of every minute, at least until that one phone call from the hospital telling her a match has been found for her finally comes.

    According to the Cystic Fibrosis Foundation, over 80 percent of those who go through a lung transplant are alive 1 year post-transplantation, and over 50 percent are alive after 5 years. A person may be discharged from the hospital post-procedure in a few days, weeks or months depending on individual patients' conditions. The foundation's website also states that post-transplant, the person will still have cystic fibrosis in other parts of the body such as the sinuses, pancreas and intestines. Lung infections are still a risk especially right after the operation since some germs may stay in the upper airway even after a transplant. Organ rejection is also possible, and someone who has undergone a transplant would likely be on medication for the rest of his or her lifetime to ward against infections and potential organ rejection.

    Nordman describes the prospect of lung transplant in optimistic terms, shrugging as she said, "I'll have to pack up immediately and head to the hospital, and then get new lungs." She is a little nervous about the procedure, but those feelings are outweighed by her desire to freely breathe and ride horses again. Until then, cystic fibrosis is just something “she has to deal with”, she says several times, shrugging matter-of-factly.  

    “There’ve been ups and downs for her, and sometimes she’s really struggling to decide what the right thing to do is, and how to go on,” Lax said. “But she tells me that all this is something she simply needs to do, and that giving up is not an option. It’s a way of life.” 

    But while she waits, she’s also looking ahead, still trying to find the bright side in every situation, and seeing how she can keep in touch with Loki despite being unable to ride - for now. She has more years of theater to be involved in, a horse show to organize and one day, a new pair of lungs to receive.

    In other words, she's good. 


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