Sarah was born in London on January 4, 1964, in a one-bedroom basement flat near Hampstead Heath where our family had taken up a residence that was to last several years. According to the English practice, a midwife delivered her at home and a doctor came to look in on her the following day. During the examination he noted that she had an extra flap of skin on her neck and her hips were dislocated. He prescribed splints to remedy the hip problem and later returned to inform us that the flap on her neck was an indication of a rare genetic defect known as Turner Syndrome, which was caused by missing cells in one of her two x chromosomes. Among the life consequences of this condition, according to one medical encyclopedia, are a wide and webbed neck, low-set and curled ears, low hairline, small stature, swollen hands and feet, drooping eyelids, dry eyes, cataracts, obesity, diabetes, infertility, arthritis, middle ear infections and, less frequently, hearing loss (which in Sarah’s case was progressive and severe); also heart defects and high blood pressure. Early death. The encyclopedia notes that there are no known preventions or cures.
Characteristically, Sarah refused to have her webbed neck and drooping eyelids and curled ears corrected by plastic surgeons. She endured more than one elaborate operation to restore her hearing, which failed. When she reached adolescence she was given hormones to create female characteristics such as breasts and menses but which, as a side effect, piled on unwanted weight. Because the hormones did not make it possible for her to bear children she considered adopting one as an adult. On reflection, however, she rejected the idea not because she didn’t want a child but because she was afraid she would be unable to provide for one.
As a result of her constant need for medical consultations, she soon acquired a distaste for hospitals and doctors, and a skepticism about their ability to provide remedies. For years I tried to persuade her to get a hip replacement for her arthritis, especially after having had a successful one myself. When I saw her limping and recalled the pain of my own degenerating joint, I pressed my suggestion, but failed. She was waiting for a less intrusive intervention, which she had learned was on the way.
Despite her frustrating experiences with the medical profession, she was conscientious about her doctor visits and understood that the co-arctation of her aorta, which raised her blood pressure to dangerous levels, was a threat she could not ignore. She was dutiful about getting her checkups and since her mother and sister were both nurses I was confident that she was being as well looked after as possible, given her natural resistance to being looked after at all. Eventually, medicine again proved itself an imperfect science, this time with consequences that could not be reversed. Among the papers she left behind was a hospital report from her last check-up, which she had received a month before she died. It indicated that she was doing well.
Among the life-long afflictions she suffered were ear infections caused by her deformed Eustachian tubes, which made her virtually deaf. She was prone to stomach flus which were common ailments in the dank San Francisco winters. To these were added the occupational hazards of colds and sore throats picked up from her children in the pre-schools where she worked. Her recurring ill-health was a source of constant frustration to her, but she was able to summon a good humor about it. When I asked what she was taking for a particularly aggravating cold, she replied, “My favorite: ‘Wal-tussin.’” This was a Walgreen knock-off of the cold medicine “Robitussin” but because I had never heard of it, I thought she had made the name up. The reference became a standing joke between us, which helped to avoid the irritation that could intrude on any conversation about her health.
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