About a year ago, I took the subway to Mount Sinai West on 59th Street and 10th Avenue to help my friend Jon get home after his knee surgery. He had planned to go to the hospital and return to school alone, but I thought it would be best to go and make sure he came back safely.
To me, surgery is a big deal. I’ve never had one. But Jon has done this before—this was his seventh major surgery in 16 years. For him, it’s nothing out of the ordinary.
Jonathan Harper is a student in the School of General Studies, set to graduate in 2018. The first time I saw him was during a General Studies orientation party at Bernheim and Schwartz. They had opened the area in the back and provided long conversational tables for us to “orient” ourselves among our new classmates. Jon, who had shoulder-length hair at the time and was sporting a vest and bowtie, stood in the middle of the room with a whiskey in hand. He wasn’t talking to anyone, just looking around with a big smile on his face. I remember watching him with some confusion and wondering about what he could possibly be thinking. When I asked him later, he remembered the moment vividly. “I was just looking around,” he said. “I was looking at all the people.”
The surgery that Jon underwent last year was to remove part of a torn meniscus in his left knee that was causing the joint to lock. The tear made walking or crossing his legs excruciating. Even so, it wasn’t clear whether or not the surgery would actually help ease the pain. The meniscus is meant to cushion and stabilize the knee joint; Jon, after the surgery, would be left cushion-less.
Meniscus tears are common, especially among athletes. In most cases, they can be mended with time and rest. If the tear appears on the outer portion of the meniscus, the generous flow of blood to this region can help it to heal on its own.
But Jon is not an athlete. His meniscus tore because of a chronic weakness in his knee, so this rest and recovery method was not an option.
Knee surgery at Mount Sinai West was one of the many that Jon has undergone since getting diagnosed with lupus when he was 12. Since then, he has endured chemotherapy, protein injections to his thighs, and triple pneumonia, for which he received eight liters of oxygen. He has had experimental hip replacement surgery, one major biopsy in which surgeons opened up his stomach to retrieve a lymph node, and has taken a year of medical leave from school, during which he was quarantined at home to protect his weak immune system.
I have always been impressed with Jon’s ability to embrace his disease for all it can give, rather than focus on what it takes away. He has been able to use his disease to foster relationships and open himself up to people. But at the same time, he doesn’t want it to define him.
I only met Jon properly a few months after I first observed him in Bernheim, for a study group for our evolutionary biology class. When I got to the library, he was sitting on the bench in front of that large mural in the lobby of Butler. I introduced myself and sat down beside him. Another girl walked toward us, and I remember Jon commenting, “God, doesn’t she have the most amazing bone structure?”
Jon told me that he had lupus the next time we hung out. He asked me if I would like to feel the spot on his leg where his fibula once stood. “My fibula being gone is really a novelty item, which I use as an icebreaker,” he later tells me. “Or my hip replacement, which you can feel because there’s no flesh that grew over, it’s just a thin layer of skin.”
Of course, when he asked, I said yes. How many friends do you have without a fibula?
The technical name for Jon’s disease is systemic lupus erythematosus with complications of avascular necrosis and class VC lupus nephritis. But that’s a mouthful, so we just call it lupus.
The U.S. National Library of Medicine defines lupus as an autoimmune disorder in which the immune system “turns against parts of the body it is designed to protect.”
“Essentially,” Jon explains. “I am allergic to myself.”
Those with lupus have immune systems that cannot tell the difference between healthy parts of the body and foreign invaders. In its confusion, the immune system creates autoantibodies that attack healthy tissue, which in turn causes blood vessels to leak.
Instead of shying away from the illness, Jon is surprisingly willing to share the science behind lupus to help others understand. He explains that lupus manifests in different ways for everyone. As Jon says, “lupus is myriad.” There are five main types, all of which manifest in different ways. Jon has the most common and the most destructive type: full systemic lupus erythematosus. It affects multiple organ systems in the body—from the kidneys, bones, and skin to the cardiovascular and nervous systems.
For Jon, systemic lupus causes lupus nephritis—a kidney disease—and avascular necrosis—which causes the death of bone tissue.
Jon says that avascular necrosis in the number one way his disease affects him.
“Avascular,” he says, moving his hands to the right to indicate the second part of his definition. “No blood.”
He pauses. “Necrosis,” he repeats the left-to-right hand movement. “Death.”
“My bones die because of lack of blood. And the lack of blood is because the lupus attacks the blood vessels and they leak.”
Lupus has a reputation as “mystery” disease. In part, that is due to the fact that it is difficult to diagnose. But the word “lupus” also has etymological origins in the Latin word for “wolf.” The Lupus Foundation of America says the 13th century physician Rogerius gave lupus its name based on the “erosive facial lesions that were reminiscent of a wolf’s bite.”
Jon has a different interpretation. “The wolf hunts and tracks its prey,” Jon says. “Silently stalking and wearing you out until moving in for a comprehensive kill. When it leaves, it is surrounded by mystery. Lupus is a disease that hides as other things—until it gets bad enough to where the entire body is killing itself.”
This mystery comes from that fact that treatment for lupus is still relatively new. Jon was on the cutting edge of discovering treatment for lupus. “It’s the old joke in House,” Jon says about Hugh Laurie’s popular show. “No one ever has lupus in House. They always have something else. Except for the time the kid had lupus,” Jon pauses. “And he died.”
Society has a tendency to stigmatize diseases, to separate the clinical explanation from the reality of living with it. Diseases become something to hide or cover up, if possible. For fear of either being judged, coddled, or ignored, diseases become secrets.
Jon was 12 when he was diagnosed.
“It’s a very strange time to get sick,” he says. “You’re trying to discover yourself at that age. You’re trying to implement some of your childhood dreams, and now everything is changing around you. It’s very easy to fall into the ‘I’m the sick kid now’ mentality.”
In the process of attempting to cope with his disease, he fell into denial instead.
Jon did not go to the doctor for six years during this denial phase. He carried on with his life as if nothing had changed. He continued participating in activities like ultimate frisbee, running, and fencing—all of which were bad for his joints.
“I didn’t go to the doctor because I wasn’t Jonathan Harper who had lupus,” he says. “I was a guy who had a past, but is normal.”
It was only when Jon started taking biology classes and doing research on lupus for school projects that he began to finally accept it as part of him.
When Jon first told the woman who would later become his wife about his lupus, he was not worried about her response. “There was a certain something, when I was a young man talking to her and budding our relationship,” Jon says. “And then, all of a sudden you have this hidden disease and these experimental surgeries and these major life struggles.” For him, his lupus could make him mysterious and alluring. He felt that it showed depth of character in a way other people didn’t have.
In this way, Jon uses his experiences with lupus to relate to other people. “They show that I am both open and honest,” he explains. “I don’t talk about the semi-death experiences of not breathing on the table, I don’t talk about the holidays I spent in hospitals, I talk about the funny, interesting, quirky stuff, like that I don’t have fibulas.”
But there are obvious downsides, too.
Every Tuesday and Thursday, Jon and I have an evolutionary biology class on the sixth floor of Hamilton. I take the stairs and Jon, of course, takes the elevator along with everyone else unable or unwilling to climb the four flights up.
Jon doesn’t always bring his cane. On those days, besides a funny walk, he looks like any other 28-year-old student. So on those days, it is not readily apparent that he needs to use the elevator.
“I find myself trying to fit in,” Jon says. “Trying to be normal or appear normal to people and do normal-people things because of the judgement of me as lazy or as a faker or something if I don’t adhere to norms and take advantage of those services.”
Columbia doesn’t make it any easier. “Their buildings have the tiniest elevators in the world,” Jon says. “And the fact that most of the stairs only have one banister on the wrong side for going down stairs,” he pauses. “I mean, how expensive is it to put in another banister?”
Columbia’s accessibility issues have been discussed before. An Eye article by Megan Kallstrom from 2015 begins by shining a light on the difficulties of students confined to a wheelchair or cane due to their disabilities. Kallstrom writes, “entry into buildings and a walk from upper to lower campus becomes a route marked with breakable elevators and dark tunnels.” Jon feels that little has changed since this article was published.
Jon, like others who have what he calls “invisible diseases,” is caught between a desire to make his disease visible—be it to snag that spot in the Hamilton elevator, or to be open and honest with the people he meets—and a fear of being branded and treated differently if they do.
“I’d rather people’s first impression not be, ‘Jonathan Harper, that sick kid,’ or ‘that guy with leg problems,’” Jon says. “I’d rather it be me, my personality, my beer gut.”
What he fears more than elevator judgement or a lack of understanding, however, is the thought that he got where he is today because of his disability.
“Heck, I haven’t even registered for disability services. I’m too proud,” he says with a meek laugh. “I want my teachers to know that I have struggles, but I don’t want them to see it as an excuse.”
His only request is that people at Columbia have more of an open mind. “I want people to be aware of their fellow students, or people on the sidewalk with invisible disabilities, with struggles that you may see as an inconvenience or even, in some cases, a problem,” he says. “And that the person on the elevator, yeah they might be an athlete, but maybe they sprained their ankle or were up all night having a major fight with their mother and didn’t get any sleep. I want people to kind of step back and see that perspective before judging based off of whatever they see first,” Jon pauses before continuing earnestly. “To think, this person could have something else going on.”
Jon sits next to me in class twice a week, reading the same books and writing the same papers. But when he goes home, he has conversations with his wife about life and death. About whether or not they will be able to have kids as they await the results of genetic testing.
Jon calls this his normal. “Everybody has their own normal,” he says. “What’s normal for me is having a disease. But that doesn’t make me any different from anybody else.”
I was in the waiting room studying for our evolutionary biology final when Jon woke up from the surgery. I heard his name get called on an overhead speaker and walked into the small area where he was waiting for a consultation with the surgeon. He had already returned to his normal self: happy, chatty, and complimenting the nurses. I asked him how his surgery went.
“I don’t know,” he responded, “I was asleep. How are you?”
I told him I’d been studying, and that I hadn’t been waiting too long. “Did you bring the flashcards for EBHS?” he asked, referring to the class we were taking together, Human Origins and Evolution. I pulled the cards out of my pocket.
“Great,” he said. “Quiz me.”
Have fun leafing through our tenth issue, and subscribe to our new weekly newsletter, As We See It!