For 30 years I thrived in a world with language vivid and forthright. As a magazine writer and then editor, my words left no room for misinterpretation; we accepted an article, or sent it back for a rewrite, or unhappily for all, killed the piece. Missing a deadline could cost us our jobs. A paragraph housed an awkward or repetitive line or section? Strike it. If the story went beyond the “fit” of the page, it jumped to the next. If no room existed on the following pages, the editor cut the “runover.” Keenly aware of serving our readers, we dispensed information that was clear and relevant.
Every part of conceiving and then “making” the issue—conducting story meetings, scheduling due dates for assignments, assigning artwork, deciding the issue’s content (creating a “lineup”), editing, fact-checking, proofreading and putting the whole thing into production—moved in a steady (well, sometimes irregular) rhythm, propelled by the power of clear language. (Conversation with writer: “Your story has some holes in it—no quotes from the opposing side. If you can’t get those interviews in time to make the deadline, the piece will have to be rescheduled.” Conversation with art director: “The type is too small.” Him: “Put on your glasses. It’s beautiful as is.” Me: “Bump it up to the next size. Lose the picture if you have to.” A six-year-old could follow these talks).
I understood and honored the language of magazine publishing; after all, my livelihood depended on it.
A world of uncertainty
For the last three years, however, I’ve been held captive in a world with a vocabulary that vibrates with mystery, uncertainty, obscurity. How unfortunate, since my very life now depends on negotiating that world—the universe of “health care.” Think about it: medicine is the place where a negative result means walking away feeling positive about your health. That is, unless the test result turns out to be a false negative. Then your biopsy, for example, could mean cancer.
Something as seemingly simple as a blood-pressure reading can potentially produce any of these outcomes: “low”; “low normal”; “normal”; “high normal”; “high.” (I fall into “very low normal.” We are still trying to determine if very low normal is “normal”—for me.) Oh, and the same vast range applies to vitamin levels and certain blood counts. Limited mobility sounds straightforward enough, but what does it tell me about exercise, or walking up stairs, or getting out of bed?
Are my UBOs unremarkable?
I should explain that I have a little-heard-of, progressive, incurable autoimmune disease called primary Sjogren’s (pronounced SHO-grins) syndrome. The illness affects everything from my eyes and mouth to my gastrointestinal tract and nervous systems. Monitoring the disease and treating its symptoms requires seeing a small army of specialists constantly. To be exact, last year alone required 131 doctors’ visits, two eight-day hospital stays and two outpatient procedures: lots of opportunity to hear medspeak.
Thankfully, there are medical trials being conducted on this disorder, double-blind studies. But most are taking place in other countries. “Europe is way ahead of us,” one specialist informs me, “especially when it comes to the central and autonomic nervous systems.” So should I advertise on the French match.com? “Wanted: someone to marry disabled middle-aged but stylish woman so I can enroll in life-extending medical trial”? Oo la la!
Instead, I’m left with the top neurologists in New York City, where I’ve lived since I arrived in my twenties for my first magazine job. Reading me the radiologist’s comments on a recent brain MRI, they tell me portions of my gray matter are “unremarkable.” “That’s bad?” I venture. “No,” they reply. “What, then?” I press. “It’s neither here nor there,” they say. But of some note, apparently, are the UBOs (“unidentified bright objects”) dotting the landscape of my brain. No one can explain their significance or will tell me if their number will increase. So do I really need to know the aliens are there? Aren’t I feeling bad enough?
The most recent brain MRI, in addition to revealing lesions on my speech center (irony at work here), indicates that I also suffer from mastoiditis. That word I can work out on my own. I am directed to another specialist.
“It’s an incidental finding,” the doctor explains.
“So how do we treat it?” I ask, hoping at least one problem has a cure.
“We don’t. You have no clinical signs. It’s merely an incidental finding.” Translation: Since I had and have no symptoms detectable through an examination, and since the reason I went for the MRI had nothing to do with my mastoids, the finding is irrelevant. As an editor I appreciate the brevity of speech, but as a patient I find it maddening.
Always game for alternatives to the traditional route, I regularly see an acupuncturist. She suggests adding certain vitamins, but to check with my doctors since I am on two dozen meds daily.
“Those vitamins have no therapeutic value,” the doctor says.
So what kind of value do they have?
“None that’s therapeutic,” he reiterates, his tone a little condescending. Maybe he’s trying to spare me the blunt “they don’t work but you may think that they do.” Ah, the placebo effect. I’m catching on.
One of the phrases I find most distressing is palliative care. This is the prescriptive action for my eyes, whose glands my disease has destroyed, so I must constantly insert drops and close my eyes for hours at a time. “Palliative” sounds benign enough, but the sound belies what’s behind the word. It means that nothing can be done to reverse the condition—and that the dry feeling can be only be partially relieved. (The second definition of palliative in the dictionary is “to cover by excuses and apologies.”)
Marcus Welby, where are you?
I appreciate that professions have their own vocabularies and that, for efficiency’s sake, members talk to one another in a kind of shorthand. But when those professionals hold your very life in their hands, you want a clear, easily graspable explanation of what’s happening to your body. When I complain to a doctor about the constant use of terms I don’t know, he blames the insurance companies, who reimburse doctors so poorly they are pressured into seeing as many patients as possible in as short a time as possible. Marcus Welby, where are you?
Of course, I’m grateful, first, that I’m getting medical care at all, and, second, that no one has yet given me a drop-dead date (now that’s a phrase from publishing!). But, oh, I do miss the simpler days when language, while often more overtly brutal, dealt a blow my brain could understand.—FIONA RYAN