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ON BEING A DOCTOR

Never Again, Lisa: Childhood Diabetes in a Dysfunctional Family

right arrow Ellen L. Toth, MD

15 December 1994 | Volume 121 Issue 12 | Pages 979-980


Lisa's grandfather worked hard on the farm where the German family had made their new life and he also drank hard, especially during the depression. Lisa's father tried to follow his dad's example of hard work but somehow there was never the same challenge. There was more time to drink. Lisa's mum was a good woman who believed in the difference between right and wrong. She had inherited her own mother's distaste for the cold barren land, but hid this from her family. Lisa was the third child born to the couple, and during her childhood there was only occasional uneasiness, when her mother was unsure of Lisa's father's whereabouts. When she attempted her gentle but untolerated requests for his physical or emotional presence, he could not stand it. He had so little to give.

At age eleven, Lisa was diagnosed. Then came the repeated hospital visits. Needles, instructions, and back to school. It was a daily struggle to give herself a shot. Two years later, when the second episode of ketoacidosis occurred, Lisa was sent to the large medical center, to the specialist. He had both Lisa and her mother go through a week of diabetes education, but he spoke only to her mother, who nodded although she hardly understood English well enough to comprehend. Nevertheless, they returned home full of good intentions.

A week later, Lisa asked her mother about the diet that had been prescribed for her. The answer was that Lisa's father did not have enough money to pay for it. The mother had already pleaded with her husband for the special treatment. Yes, she had pleaded, she had cajoled, and she had even given in to his sexual advances in exchange for fulfillment of Lisa's needs. He, in turn, had learned of a new way to manipulate his wife and daughter; Lisa became a pawn in a game of domination and deceit. Meanwhile, in junior high, she craved to conform. Drugs, sex, and alcohol soon drove her back to the large medical center. The specialist shook his head, and again talked only to her mother. He then called in a child psychiatrist. The only solution, they decided, was "residential treatment" in a long-term care institution for handicapped children. Lisa stayed for four months and did well. But her handicap was different, it was invisible. She wondered what her father would say when she returned home.

She had reason to be worried. While she had been away, her parents had enjoyed her absence and the lack of preoccupation with her insulin, her hypoglycemia, her testing, and her diet. They told no one that Lisa was under the care of a psychiatrist and secretly hoped the psychiatrist had cured her. Lisa harbored the same hope, and came home willing to play by the rules. But it was not to be. The neighbors' questions, the kids at school, the uncertain flow of money, the drinking, and the fights, all told on Lisa. Her rebellion flared again. She managed to earn a reputation with the boys. There was talk, which her parents feared more than anything else. Then an incident occurred that would change Lisa's life.

Late one night, Lisa came home after a few days of partying. Her mother had had some idea where she was, but was having increasing difficulty explaining Lisa's behavior to her husband. He was tired of his depressed wife, tired of her inability to handle Lisa and her diabetes, tired of the looks he was getting in town, and tired of his drinking buddies, who were no longer fun to be around. Somehow he knew he had failed his family. He decided he would change, and he steadied his nerves with a fifth of scotch as he waited for Lisa.

At first he spoke kindly and told her how things were going to be different. His wife was impressed. He was sorry for his neglect of them. He would look after them. Lisa would have a curfew. Lisa would eat on time. He would supervise Lisa's injections. Lisa would go to church. Lisa would not see her friends again. Lisa would. Lisa began to protest. He became more emphatic. The tension escalated. Lisa threatened to leave; he said he would not allow it. Lisa raced upstairs to pack. When she came down, he was waiting on the stairs with his shotgun. Trapped, struggling to get by him, she appealed to her mother, who tried to take the gun. There was a scuffle. Lisa ran as a shot was fired, shattering the railing, missing her by inches. She kept running, and did not stop until she had arrived at her sister's house. Rumors of the incident spread all over town. The doctor sent Lisa back to the specialist, who once again consulted the psychiatrist, who now recommended "placement" in a foster home in the city. The parents agreed, even as the father begged forgiveness. Lisa remained confused. But she could not forgive.

At the foster home she met some good people. She tried to give school another chance, but was too far behind. And she still constantly fluctuated between severe hypoglycemia and impending ketoacidosis. She knew she was not eating correctly, but she had neither the knowledge nor the confidence to ask for help. She dropped out and got a job in the front office of a secondhand car dealership. Here, she also made good friends. There were more parties. She moved into an apartment with a girlfriend and bought a red sports car. For two years she lived a carefree life, friends with everyone, yet close to no one. Her needles were a secret. Her fatigue was nobody's business. She saw her thin Figure as attractive and learned that she could lose weight at will by skipping insulin for a day or two. Most importantly, she finally learned how to avoid hypoglycemia by cutting her insulin dose in half.

Then one day she awoke to blurred vision. Her right eye troubled her; she felt it "pop" and she saw red. The first doctor told her to rest. The second doctor sent her to an eye specialist. But before she could keep that appointment, she was back in the hospital, unconscious. Even in the hospital, her insulin dose was lowered, and lowered, yet she continued to experience hypoglycemia. She was given pills for her blood pressure. The eye specialist did see her, and said that he was not sure. The diabetes specialist sent her back to the education course. This time she really tried. She learned to test her own blood, but couldn't afford a testing machine. She had those car payments. She saw the eye specialist regularly. He started laser treatments on her left eye, saying it was too late to save the right. One day she couldn't get out of bed. She tried to call for help, but her speech was slurred. Her roommate took her back to the emergency room. Was she a smoker, they asked? Was she on birth control pills? "Yes," she said to both questions. At 22, Lisa had suffered a stroke.

Following her partial recovery, her mother asked her to come home. Lisa refused; she would need to be close to a kidney machine. With her failing vision, slurred speech, and constant doctors' appointments, she lost her job. For a month or two her friends helped out, but she landed back in the hospital with intractable vomiting. She was ketoacidotic, uremic. They prepared the shunt. A social worker spent time with her. She lived from one dialysis exchange to the next and heard that she was on a list for a kidney. Her mother and sister visited, but they didn't know what to say. Her brother was in a serious motor vehicle accident while drinking. Her sister would soon be moving to Quebec.

In addition to dialysis nurses and social workers, she discovered new soul-mates in other diabetic patients with kidney disease. They talked about transplants. She found new friends at the Canadian National Institute for the Blind. For the first time in her life, she started taking an interest in her diabetes; she agreed to four insulin injections a day, and tested her blood with a new talking-meter provided by the Kidney Foundation.

The day came when she got a kidney. When she awoke from the transplant, she felt a rough hand clutch hers. She heard her father's voice and her mother's beside him.

"Lisa, you can come home now," they both said. "We will look after you." But it was too late. She was glad to remain in her own world of doctors' visits, immunosuppression, and creatinine checks. Her new kidney did well. Because of her peripheral neuropathy, she could not learn Braille. But there was television. Because she was unemployable, they wouldn't give her a dog, but she bought a budgie, and they talked.

It is now eight years since Lisa got her kidney, and since I have had the privilege of knowing her. Lisa is always happy now when she comes to the hospital; it is the only place where anyone has ever seemed to care. Her hypertension remained difficult to control until she had a myocardial infarction. Her kidney continues to perform. Lately she is bothered by nausea and early satiety, but it is responding to cisapride. Her main concern these days is her mother's advanced breast cancer. Lisa doesn't know what will happen to her father when her mother dies.

But she knows one thing: it won't be her problem. She has been able to talk about "the incident" in Diabetes Support Group. She has learned that it was not her fault. She thinks the shooting attempt saved her life, giving her the impetus to leave home for good. She tells the medical students, to whom she now lectures annually, that she feels better physically than ever before. Then I painstakingly list her complications for their benefit, and tell them that I hope they will never again see a case like hers. Never again, Lisa.


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University of Alberta; Edmonton, Alberta, T6G 2R7; Canada





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