By JESSE POWELL/Montana State News
Amidst the hustle of students at Montana State University a car pulls into the close-in handicapped parking spaces. An attractive, young, blonde woman hangs a blue tag bedecked with a wheelchair logo and exits. She is lacking any prosthesis as she gracefully walks into the SUB while others plod the Manchu March from F-lot or idle in vulture pattern for an open spot.
The young lady sports a fashion indicative of faithfully practicing and enjoying the benefits of a healthy lifestyle. That is something Jordan Brown has never had: a healthy lifestyle.
Jordan was born with Nail Patella Syndrome, also called Fong’s Disease, which limits the range of her joints and has left her in urgent need of a kidney transplant. She, too, does not like the idea of the young woman parking in the handicapped space, and that is why she has never applied for one.
“I just try to blend in,” Jordan stated with a slight grin as she pantomimed hanging a permit, “I don’t want to be labeled. It [Nail Patella] is hard to explain.”
Appearances are deceptive with her affliction on the inside. When told she doesn’t look different than anyone else, she takes it as a compliment.
“I have always felt different. People don’t understand, the things I do, like shooting a shotgun [at clay pigeons] takes a lot of work.” She flexes her arms and rotates her shoulder, “I have to work up to it by myself…on my own.”
Indeed she is a chameleon imbedded with her contemporaries. The odds of NPS occurring are 1-in-50,000, according to NPSW.org an organization for NPS patients. Rare is a poor word. To put it in context, that is the odds of a coastal dweller dying in a tsunami. According to statistics gleaned from the web, the odds of dating a supermodel are 1-in-80,000. The odds of becoming a professional athlete are 1-in-22,000. Disability Rights Montana, a state advocacy group, does not even list NPS on its application. Jordan is rare even among the disabled.
“The challenge of being normal is that there is no support. Unlike other disabilities, handicaps, they have all these groups and clubs. I have no real support network.”
Asked if she had applied for some sort of assistance, Jordan quickly replied, “I was rejected by the state.” She hasn’t attempted to pursue campus options. When inquiring about schoolwork options should a kidney for transplant become available, a procedure that would create an absence that could last a month, she has had instructors flatly tell her to drop out of school.
“It wouldn’t bother me so much but my doctor has heard of other girls having faculty work with them. You know, courses on D2L,” Jordan said adding that she knew that some courses would be impossible to catch up in.
Understanding Jordan’s disease is another challenge. Nail Patella Syndrome is genetic with the rare case of spontaneous mutation in people without hereditary predisposition. As the name implies, the two predominant symptoms involve the finger- and toenails and the kneecap. In 80-100 percent of NPS patients, nails are partly or completely missing.
Half of NPS patients are born without kneecaps. In other cases, the patellae are abnormal and tend to dislocate when the joint is straightened. Connective tissue, ligaments and tendons, do not attach themselves properly around the joints, knees, elbows, ankles, and spine, hindering mobility and putting the patient at great risk for injuries like hyperextensions and dislocations. Fifty percent of people with NPS then experience kidney disease. This is the point where Jordan is now.
“Treyton is the thing that has brought my family into focus,” Jordan speaks of her son. “He is what propelled me to college and why I don’t give up.”
Jordan, now 23, gave birth to Treyton two weeks before graduating high school when she was 19. This has often created another stigma for her among women her age. She carries the negative weight of being a “single teen mom” but has recently begun to find her son to be an “icebreaker” in meeting new people.
Jordan laughed at the irony of Treyton’s “perfect timing” in relation to graduation. One cannot help but consider that the boy’s arrival, if it had come later in life, may not have been possible. In the aspect of having children, a cautious woman has had to move in fast-forward. Having a small child has its own challenges and has often been difficult for Jordan to maintain a social life.
“I can’t relate to most women my age. Their problems and what they are interested in, I just don’t have that. Mostly it’s because I’m a single parent,” Jordan surmises.
When asked what her goals are she came up with a short list. She desperately wants to live on her own, but she acknowledges that it is impossible until she has a kidney transplant. Her parents, with whom she still lives, express the strain NPS has had on their lives in their own private ways.
According to Jordan, her father, a traditional patriarch, has had a hard time relating to his “fragile daughter.” It was his decision to move the family from Cazenovia, N.Y., in 1997 because he liked hunting. He has taken to steadfastly bonding with his grandson, Treyton. Jordan’s father is not insensitive. On the contrary, he has a unique perspective of parental sacrifice. If possible, it will be his kidney that Jordan receives.
Jordan’s position within her family structure allows her to experience a microcosm of her major of study, community health. For Jordan, her education is her ticket to independence. Once she receives her transplant, she feels she will be able to fully leave her “life’s hiatus” and throw all effort into fulltime study. She is a junior now and is ticking classes off a little at a time.
“Then I can think about moving and getting a job,” she laughs. Jordan won’t allow herself to get any further in building plans for the future. Like her father, she says she sticks to rational reality. Her message for her fellow students, “I secretly wish people weren’t as judgmental or feel as though they have to prove something.”
That is a common enough desire, but coming from somebody whose differences are hard to see on the outside, it illustrates how difficult it is for some people to recognize what is on the inside.