New patients usually come to my internal medicine practice for one of three reasons: they’re unhappy with their previous doctor, they’ve outgrown their pediatrician, or they’re new in town. Of these three, only the last gives me no trepidation. Unhappy patients may become unhappy with me, after all, and eighteen year olds frequently arrive attached to anxious parents. Still, overcoming unease (the patient’s and the doctor’s) is an important first step in the healing process. So fears are elicited and assuaged, parents are dispatched to the waiting room, and, as the doctor in Philip Roth’s Portnoys’s Complaint puts it, perhaps we “begin to begin.”
I was not sure where to begin, though, with an elegant woman in her late 60s who came to see me for the first time many years ago. “I don’t seem to be dying,” she declared mysteriously when I asked the reason for her visit, “So now I think I’d like to make sure I stay healthy.” She was slender, long necked and olive skinned, with a sultry and not quite identifiable European accent and the kind of erect posture, impeccable grooming, and pursed lipped tone of mild disapproval one associates with French women. I could not place her, and her married name—Mrs. O’Malley—certainly offered no clue.
As the visit proceeded, Mrs. O’Malley filled in the gaps in her case (and her story), all in a hoarse and croaking voice which did not detract from her eloquence. She had been born into a wealthy Lebanese family--surely I knew that Lebanon was once a French colony and that Beirut was long considered the Paris of the Middle East?—and she had emigrated to the U.S. as a young woman in the 1950s. She married a man from Ireland, a linguistics professor at the local university where she completed her studies, and they had lived a contentedly childless life for decades enriched by books, opera and travel until she began to lose her voice. After several ineffective courses of antibiotics for a presumed throat infection she started having trouble swallowing as well. Her primary care doctor referred her to a neurologist who diagnosed ALS (Lou Gehrig ’s disease) and told her that though some experimental treatments looked promising, she would be wise to set her affairs in order.
Now, four years later, she still had difficulty speaking and swallowing, but the supposedly progressive illness had progressed no farther. ALS is an especially cruel disease, stripping its victim of motor function while leaving the brain intact. You watch yourself lose your ability to speak, swallow, walk, and, finally, breathe with full and merciless awareness. For Mrs. O’Malley, though, only her voice and swallowing had been affected, and for a while she lived in fear, waiting for the next assault, as if a vicious enemy lay waiting in temporary retreat after launching its first devastating blows. But as the months passed, Mrs. O’Malley grew impatient waiting for death and so she began carrying a pad and pen for when she couldn’t make herself understood, sipped high calorie shakes, and planned trips with her husband again. She also asked a friend to recommend an internist so she could catch up on the sorts of things one does when one has the luxury of hoping she might live many years more: Pap smears, mammograms, cholesterol tests.
A year after I met Mrs. O’Malley I received a call one Saturday from a hospital in a beach resort town. My patient, the emergency room doctor told me, was coughing up blood, so much blood that she’d had to have a breathing tube placed to prevent her from drowning in it. She was transferred to the hospital where I work and found, by an ear, nose and throat specialist, to be bleeding from a very slowly enlarging tumor on the back of her tongue. She’d never had ALS at all – it was this tumor that had affected her speech and swallowing. Surgery and radiation treatment took a heavy toll: Mrs. O’Malley had a tube inserted into her stomach through which liquid nutrition dripped as she slept and she could now speak only by placing a manicured finger over the tracheotomy hole in her neck. But, despite these discomforts, Mrs. O’Malley was, officially, no longer dying. She took up old interests with renewed relish and lived several years more.
In the years since I first met Mrs. O’Malley I have presented her case, I have told her story, to many groups of medical students. I tell them that if something in a patient’s story doesn’t make sense, it may be the key to the diagnosis. Some doctor, including I, should have realized that Mrs. O’Malley’s “non-progressive” ALS couldn’t have been ALS in the first place.
Sometimes when things aren’t what they seem it’s because…they aren’t.