writing the diagnosis

By Caroline Wellbery
What is writing the story of one’s life if not a diagnostic exercise? We look at patterns, discard what’s irrelevant, and go through the old charts looking for early hints of trouble we’d once overlooked. The best diagnosticians see the whole picture, and within that picture discern connections that others have missed. My mother, of Westfalian peasant stock, was in many ways sturdy, stoic and tough. But when I was 5 years old, she had pneumonia, requiring her to spend 6 weeks convalescing in a German hospital. She had other pneumonias later on, readily treated with antibiotics. It seemed she was often ill. Later she was diagnosed with pernicious anemia, an autoimmune disease that prevented her from absorbing Vitamin B12, a crucial building block for the production of red blood cells. Luckily, this kind of anemia is easily treated. She received B12 injections every month or so and she was fine. But the pneumonias continued. Indeed, they seemed to take an increasingly serious turn. It took several more years to see beyond the individual episodes to make a diagnosis. At the local community hospital the chest xray showed the usual pattern: pneumonia, the telltale wedge-shaped infiltrate in the right lower lung. The doctor assigned to her case, a pulmonologist, scratched his head: “How many times has she had that?” “Oh, lots. Dozens of times.” And that’s how he made the diagnosis of a particular immune deficiency that made my mother’s body susceptible to bacterial infections. He called it adult-onset agammaglobulinemia. And for this condition too, there was a treatment. At great expense to the taxpayers, my mother received monthly intravenous gammaglobulin infusions that prolonged her life by many years. The doctor recognized not just the typical pattern of pneumococcal infections, but the pattern of their reoccurrence. Her pneumonias had merely been symptoms of a very different disease. And so it is that when we look at our lives, we wonder whether the recurrent features of our behaviors and interactions aren’t part of a larger pattern for which we must seek a deeper origin. There is, in every story, such a unity, manifesting as the conflict that drives the hero’s quest. I don’t want to force my analogy. Recognizing the patterns of one’s own biography is a different task than making sense of the patterns of illness. While they are both interpretive acts, they connect to different goals. In the case of our personal stories, we seek to organize and communicate what we have learned. In the case of illness, we seek a cure. But there is overlap. My mother’s illness makes an instructive story. Her two autoimmune conditions didn’t just happen at random. I have no doubt that her pernicious anemia was connected through a primary process to her B-cell deficiency. This represents an organizational approach that might lead to new knowledge. Then there is the interaction between predisposition and environmental conditioning, which is so essential to understanding the autobiographical self. I can’t help speculate whether, beyond looking for genetic causation, the harsh conditions of my mother’s early life—poverty, hunger, emotional deprivation and rape—didn’t render her susceptible to the body’s self-destructive tendencies. Finally, illness defined an important arc of her life’s narrative. Just as the psychological damage she suffered early on might have made her vulnerable to the expression of her disease, so her disease also accounts for the way her life ended. The scarring of my mother’s lungs from so many bouts of pneumonia took their toll on her heart. She developed a common arrhythmia, called atrial fibrillation, a condition that, though manageable, increases the risk of stroke. Eventually, my mother did have a stroke, while the strain on her heart caused her actual death. My mother’s illnesses were all connected. Certain of these connections were crucial to saving her life—as well as accounting for its end. Others are of medical curiosity or mere speculations. But together, they tell a story that spans her time here on earth. When we look to solve a diagnostic puzzle, our inquiry takes us further and further into the mysteries of an organism, just as another diagnostic lens reveals the mysteries of our life’s choices and circumstances. Herein the stories of illness and the stories experience converge.