One Sick Girl

Sick Girl, by Amy Silverstein, is a memoir worth reading (perhaps even in one sitting, as I did). The book chronicles twenty years of her life, from her diagnosis with a mysterious heart ailment as a twenty-four-year-old law student, to her transplant operation a year later, to her early forties, at which point she has outlived her life expectancy by at least ten years.

Silverstein's memoir is important for what it reveals about doctors, patients, and the relationship between patients and loved ones when one is a perpetual patient. Silverstein initially brings her complaint to her internist, but comments that internists are basically doctors "for healthy people," because as soon as something actually goes wrong they refer you to a specialist. There's nothing wrong with this per se--internists should refer to specialists--but what galls Silverstein is that the moment a specialist enters the picture, the internist, no matter how profound his/her relationship with the patient, exits stage left, never to be heard from again. It's a hard blow to take, that the doctor with whom you have a relationship is no longer managing your care. Silverstein also does a wonderful job describing the tendency of specialists to, as she calls it, "punt," a question to another specialist, thereby avoiding responsibility for the problem. Finally, she has an all too realistic understanding of the fact that doctors, no matter how close and longstanding the relationship might be, are not your friends; if you expect them to be so, they will fail you miserably. In her case the transplant doc with whom she has worked for seventeen years is on vacation when she has a cancer scare. When she finally manages to get an email to him explaining the situation, his response is that she should find an oncologist. He later admits that if he had taken just five minutes to look at the case he would have realized that there was nothing to worry about and been able to save her weeks of needless stressful, painful, procedures. Finally, Silverstein writes at length about a medical culture in which anything--good or bad--that can't be explained can send a doctor running. It doesn't really matter if the particular phenomenon is positive or negative--if it can't be explained, the doctor's out the door.

Silverstein writes compelling about what it means to be a patient, and the difference between being a good patient and a bad patient. Her boyfriend, then finace, then husband, Scott, forces her to be a good patient most of the time, but her underlying inclination is to kick and scream and go into "bad patient" mode. ("Bad patient" mode, incidentally, consists of questioning or fighting against anything a medical professional tells you to do. Ever.) She is also quite clear regarding the indignities of being a patient, as when, while waiting to be anesthetized for her heart transplant she becomes overwhelming insecure about the fact that her breasts are exposed to all and sundry. She understands that being self-conscious doesn't just go away because a doctor's in the room.

Silverstein also writes about the profound sense of loneliness that comes from having a rare, chronic, condition. Although she finds great strength in her boyfriend/fiance/husband Scott, who is remarkably accommodating and accepting, she realizes that not even he can understand what it feels like to be sick all the time, exhausted all the time, forced to take medicines that are in fact poisons all the time. She puts on a happy face virtually all of the time so that she will not upset (or wear out the patience) of those around her, but then finds herself resenting the fact that they don't understand how sick she really is. She comes face to face with the hard truth that those who have to work the hardest to appear well generally get the least amount of credit for the effort that goes into creating that appearance. Not maintaining that appearance, though, blows everything to bits. When Amy lets her "sick self" out of the bag, nobody, not even Scott, is prepared to support her.

The most fascinating aspect of the book is Amy's descriptions of the ways in which a transplanted heart, because it is not attached to the nervous system, never really feels like one's own. A transplanted heart gets a lot of mixed messages, adrenaline-wise, and it's constantly pounding like crazy when it shouldn't be, or not pounding like crazy when it should be. It's a good metaphor for this kind of chronic illness as a whole.