 By Timothy M. Rivinus The Providence Journal March 30, 2005
What is less known, however, is that her current emergency is a recapitulation - or chronic continuation - of an illness that emerged in her life many years before the current events, and the medical calamity that set them in motion. Terri Schiavo had anorexia nervosa, a disorder of many layers. It is "culture-bound," occurring almost exclusively in lands of nutritional plenty. It is an illness mostly afflicting young women, for whom body image and physical appearance are projected onto the catwalk of life, occurring either shortly before or during the early childbearing years of a woman's life. Anorexia nervosa is also an illness of control. To what extent does a young woman control her life and what happens to her body? Who controls her perception of what she looks like to herself and to others, and what she will eat or not eat? Central to the disorder is a body-weight distortion. The subject believes she is too fat, when just the opposite is true. Being "too fat" becomes a mind- and body-consuming obsession, which then leads to the other defining requirement of the diagnosis: The young woman continues, now delusionally, to pursue thinness to the point of malnutrition. The weight loss is dramatic and arrives at the point pathologically demarcated at less than 85 percent of expected body weight for height. (It often gets as low as 60 percent or 50 percent of that weight in severe, sometimes mortal cases.) Untreated sufferers of anorexia nervosa usually do not feel that they suffer, except perhaps from the perceived strictures of those around them, especially the experts in eating disorders. During increasing malnutrition and with symptoms from which most of us would reflexively recoil, the sufferers feel better and more in control of things. They may deny their illness to the edges of mortality, wondering obliviously and delusionally what all the fuss is about. They will fight for their right to do what they will with their bodies, regardless of the medical consequences. The treatment of anorexic patients can thus be one of the most challenging in all of medicine. It sometimes even leads to the ethical dilemma of whether to force-feed the afflicted, by employing a nasal-gastric feeding tube, to save her life, or at least prolong it, if only temporarily. In rare cases, if the patient cannot be persuaded to volunteer for this measure, a court order is requested to let medical professionals perform the procedure against the patient's wishes. Because anorexia nervosa deviates so from what is considered the norm of human behavior (some say it is the "norm" pushed beyond its limits), and is so caught up in the debate over the rights of the individual vs. the rights of the surrounding community, the illness often becomes a spectator event. Conferences at which eating disorders are discussed are routinely oversubscribed. Celebrities with the illness are the more newsworthy for the defiantly exhibitionistic and life-threatening nature of the disease. Of the many severe symptoms of anorexia (and its close, but far less lethal, relative, bulimia nervosa), the most life-threatening and hard-to-treat symptom is purging: a self-induced emptying of the gastrointestinal tract of recently ingested food. This is usually done by self-induced vomiting or the misuse of laxatives or enemas. Purging can also include inappropriate use of diuretics, causing the body to overheat with compulsive exercise or other methods, so as to rid the body of water weight - and of corresponding body electrolytes: potassium, sodium, chloride, carbon dioxide and other essential minerals. Sometimes normal body fluid and electrolyte balance is further distorted by "water loading" (the drinking of prodigious amounts of water) when the subject is asked to undergo medical weight monitoring. Purging and its related behaviors, when combined with the severe emaciation and fragility of the anorexic patient, can easily tip the afflicted body into a life-threatening electrolyte-and-fluid depletion or distortion. The most dangerous of these distortions is hypokalemia: an often-fatal potassium deficit that affects muscle functioning. Because it is the heart muscle upon which the entire body relies for circulation, oxygen delivery, nutrition and detoxification, if that muscle stops, we die. Should this muscle fail for even minutes before resuscitation, parts of the brain may die. Brain death happens progressively, starting usually with the areas of the brain that are most distant from the heart: the neo-cortex and limbic system, where consciousness, thought, complex feeling integration, sensation, language, volition and complex movement are registered or initiated. Terri Shiavo's neo-cortex essentially died 15 years ago. This led to her vegetative state. The part of her brain that survived was that core in the mid-brain and spinal cord that governs heart rate, breathing and primitive reflexes - but not the will or ability to eat, the process that is so basic to survival, nor the part of her that was the "self": the developing part of a person that can think, dream, relate and cope independently. That part was what made Terri Terri. This is the psychological and medical tragedy behind the Terri Schiavo tragedy. It is not the whole story, but an essential part. Its lessons offer us a resigned and ambivalent clarity. The afflictions and dilemmas of humankind and of medicine are hard among us and do not end. Our short lives, as Shakespeare said in "The Tempest," are "rounded by a sleep." These are certainties that cannot be legislated or willed away. Terri Schiavo's feeding tube, when it came to the mortal loss of potassium in her frail body, was already inserted too late. And, given her anorexia, that may have been her wish. We will never know. Or it may have been that, like Daedalus, she shared the sometimes-terminal delusion from which humans often suffer: that we may escape the odds, if not live forever.
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