| Moli's Story: The Heroism and Optimism of a Fifteen Year Old and Her Mother |
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She was a cute 15 and a half year old teenager from a development town in the southern part of Israel. She couldn't believe that her usually ‘strict' Moroccan born father and French-born, chic but very protective mother, had allowed her to go on a three day trip to Tiberias with friends._option_option_option
Sitting at the bus stop she had a strange sensation around her mouth. It almost felt as if her mouth was being pulled to the right. Her friends were off buying last minute candies for the trip, and when they returned she didn't bother to say anything because her mouth had returned to itself. She returned home and she just forgot about the whole thing, enjoyed herself, her friends the trip and life in general. What she didn't know then, was that this would be the end of her carefree life, and to a great extent, the end of her childhood-- her teenager-hood. Less than a week later the strange feeling around her mouth returned. She went to show her mother, to see if her feeling that her mouth was being pulled up to the right, on the inside, was a noticeable on the outside too. As she was telling her mother, she lost consciousness, shook, trembled and collapsed in her mother's arms. She had what was later described to her, as her first epileptic seizure. Her life, and her family's life, had irrevocably changed in that moment. The next 18 months included repeated seizures, diagnoses as epileptic, as well as a non responsive/ negativistic patient, who was held responsible for the fact that the medication prescribed did not seem to work. It was implied to both Moli and her mother, that had Moli taken the medication as prescribed, she would not be having these recurring seizures. As the months progressed, Moli gained a lot of weight which seemed to be a side affect of the medication. This fact did not enamor Moli to the medication, as one might expect of any normal 15 yr. old. As the months progressed, Moli began to withdraw from her school and social set. As time went on Moli's ‘body integrity' continued to dissipate. Eighteen months after the initial attack, Moli's right arm was somewhat paralyzed as was her leg. On yet another hospitalization in a noted Tel Aviv Medical Center for evaluation of medication failure, her regular neurologist was ill, and in the course of Grand Rounds, a visiting neurologist with a whole entourage of medical students, introduced ‘this case' as a Brain Tumor. For Moli's mom, who understood just a little English, this was the first time someone had used the word Tumor in describing her daughter. Then both mother and daughter asked questions and told the doctor this fact. He was surprised, as to him it seemed obvious that a Brain Tumor was the diagnosis. What about her MRI, she was asked. What MRI, Moli had never had a MRI, though she had undergone CT scans, which were inconclusive. Mom was told to get Moli a MRI as soon as possible. This was not as easy as one might expect. Moli's Mom was told that there was at least a two week wait for ‘emergency' MRIs. But she was told, that she was nice, and if she asked the overworked MRI staff nicely, they might accommodate her. With eighteen months behind her, she had just a minimal amount of energy left to cajole the MRI staff. But Moli is blessed with a optimistic, resilient, and persistent mother. She told them of her daughter's plight, the year and a half, without knowing that a "Tumor" may be at the base of the difficulties, the progressive loss of motor functions, hand and foot. They agreed, and Moli had her MRI by the end of that day. The tumor was identified as 3x4 cm. A date for surgery was made. The parents, through the help of Rabbi Feirer, had researched the hospital and surgeon they wished, and within a week had an appointment. Moli was prepared and ready to go. With nervous anticipation they waited for ten o'clock, the time designated for the surgery. However, at close to three o'clock that day, the neurosurgeon told them that he had had an emergency, and could not operate on her that day. Another date was given. Who can even find words for the frustration and disappointment Moli and her family felt. To know a tumor was present, to have found a neurosurgeon, to have a date, time, to prepare oneself for the ‘worst', and then to be postponed. What a crushing experience! A new time and date was given for the surgery. Though Moli felt like ‘bolting' yet again, she was unable to do so, and two days after the initial date, she underwent her operation. The tumor that was removed had grown further, and was 4x4cm when it was removed. Within a relatively short period of time she was almost back to her ‘physical self' . Moli had gone a great distance, she was in another place, and time as compared to her peers. She was not the same person. She did not want to go back and pick up the pieces of her life before the surgery. She did not wish to continue a ‘life interrupted', she wanted to start a new life, a newborn life, not an interrupted life. This course was one that she acted out. Rather than expressing in words these feelings, she acted in a fashion that isolated her from her peers, and created situations that caused the school to ask her to leave. When she found another high school, she was told that she had ‘missed' a lot of material, (school work) and would have to redo the grade again. An embarrassment and yet another attack to her sense of self, but one which she was prepared to withstand, in order to continue her education. She knew that her future, now medically assured, would not be realized, if she did not complete at least her high school and Bagrut - National High School Matriculation examinations. The new school was prepared to grant her special dispensations for tests; however, the Ministry of Education required that she undergo a neuropsychological evaluation in order to verify that she indeed required the extra help, she and the school's guidance counselor were asking for. It was as if having had seizures for eighteen months, receiving medication that did not help the medical situation, gaining the weight because of negative reaction to the medications, withdrawing in shame from friends, school and family; having the surgery, the crushing fear of pre operation-brain surgery; and then the conflict of disappointment tinged with relief when the surgery was unceremoniously postponed. All the while knowing that your life was at stake. After recovery from a trauma most of us will never come into contact with, Moli who has overcome so many adversarial situations, accepted the embarrassment of being forced to repeat a year in a grade. Now the Ministry of Education, was requiring this teenager to undergo a full Neuropsychological evaluation to ‘prove' that she is ‘damaged'. Could the Ministry of Education possibly see this as an ‘educational' response? Could they fathom the opening of psychic scars that a ‘Damaged" diagnosis could cause? Instead of using the neuropsychological assessment as another assault against this heroic teenager, we tried to reframe the referral question. The object being, not to emphasize past problems, but rather the future by relating to the positive results. The assessment would help Moli, evaluate her strengths to circumvent her weaknesses, in an effort to emphasize her options for achieving education and professional goals. |
