Piles and Piles of Paperwork
Josef K. was arrested, so the story goes, on his thirtieth birthday. The crime he was arrested for is unknown, the agency of those who arrested him is equally unknown, and the tribunal in which he would be tried is completely uncertain. Joseph K. set about to defend himself against these faceless charges, only to spend months endlessly visiting remote buildings, executing paperwork, and remaining paranoid of others finding out about whatever crime it is he did not commit.
Josef K. is the protagonist of the story "The Trial," by Czech writer Franz Kafka. A celebrated 20th-century author, Kafka is known for blending realism and fantasy. Trained and educated as a lawyer and working for a large Italian insurance company, Kafka wrote novels and short stories in his spare time. Most of the literary acclaim came after his death from laryngeal tuberculosis at the age of forty.1
The existential angst of a single individual encountering the bureaucratic nightmare of modern society is the theme that runs through the novel. One can only imagine that working for an insurance company as a lawyer led Kafka into writing the story of a man who becomes lost in a world of process, paperwork, monotony, and isolation.
To my surprise after being diagnosed with RA, my life too would become one of a seeming endless sorting through paperwork, phone calls, appointments, and bills. It seems that every day a new letter arrives, whether it be from my insurance company soliciting a survey or trying to convince me to use their pharmacy specialty services or a bill from a doctor I saw six months ago. Though my rheumatologist works in a clinic in a major university hospital that has moved its billing and scheduling online, it seems that I am endlessly juggling phone calls for medication deliveries, appointments, and bills.
Don't get me wrong, I consider modern medicine and care an amazing thing. My doctor uses a web service that allows me to see my lab results, send her messages or questions that are almost always answered within 24-48 hours, and to see my bills, chart notes, and medical history in a few clicks of the mouse. It is phenomenal!
Just last week, however, I got a notice of a past due bill I didn't even know I had. We had moved homes in the same time frame that the clinic was transitioning to online billing, and somehow I had an account due that never arrived at my new address and didn't show up in the new system. So much for congratulating myself on staying on top of the paperwork! Quite quickly I was swept up in urgently calling various numbers to resolve issues and set up payments.
Despite my best efforts, staying on top of managing RA just in terms of office visits, scheduling appointments, paying bills, picking up medications at the pharmacy, responding to phone calls, scheduling deliveries, and planning my life for the fatigue that can follow injections, is no easy task. I recently began a new job which entails completing piles of forms, and am also in the process of applying to graduate programs, which is an overwhelming task in and of itself. I feel like I am drowning in bureaucracy and paperwork!
The story of Josef K. closes with a parable called "Before the Law:" A man from the country arrives at a gate that is the entryway to the law. Before the gate stands a gatekeeper, who will not let the man enter. Briefly, the man sees through the gate, and to his surprise, there is another gate and another gatekeeper. "I am only the most lowly gatekeeper,” says the guard. "But from room to room stand gatekeepers, each more powerful than the other." Desperately, the man from the country grows old waiting at the gate, only to have the gate closed on him as his life nears an end.2
I often feel like the man waiting at the gate. Endlessly it seems there is something to do, and when that thing gets done, there are more rooms with more gatekeepers. Though technology and the Internet have simplified life in many ways, it seems that the amount of things I have to manage is ever growing. Little did I know when my first symptoms arrived, that living with RA would not just entail managing a tempestuous and relentless condition, but would also include managing the bureaucracy required to treat it.
You know you have RA when [select all that apply in your experience]: