September 3, 1999
This past week was relatively uneventful medically, except that Timmi again needed blood on Tuesday. The plunging hemoglobin is a problem, as it takes away her appetite and makes her weak and nervous. The good news, though, is that she went back to school on Friday without any particular problem (she didn't feel the greatest when she got there but got over it and stayed the whole school day). She took matters in her hands and got the girls in her class to organize among themselves to notice when she is absent, and bring her notes and assignments. Best to arrange that stuff from the first day!
This Thursday is the scan that will indicate whether this course of chemo did any good, so we're "holding our fingers", as they say in J.C. (Jewishly Correct) Hebrew.
Have a good week and if I don't get a message out in the coming week, Shana Tova* to you all.
*Happy Jewish New Year
September 4, 2004
This week, Aimee and Danny went back to school after summer vacation. As always, the new year brings with it the stress of uncertainty, together with the promise of a fresh start. For Aimee, the question is whether in tenth grade she’ll finally decide that school can actually do something for her, and is worth the relatively small effort that she has to put into it to do well (the first few days look hopeful). For Danny, who is starting eighth grade in a new school after transferring from one in which he was very unhappy, the main question is whether he’ll find a social group with which he’s comfortable. My own experience, and my family’s, has been that social issues at school are far harder to deal with than academic ones.
School was always an uncomfortable affair for all my children, but most so for Timmi. Even before she got sick, her strong personality, her pride and her insistence on what she thought was fair brought her into conflict with her schoolmates. She'd also clash with her teachers, always saying exactly what she believed, and would never back down if she thought she was right. Her impeccable honesty also got her into trouble. Once, her principal came in to make an announcement that the children thought was unfair. When she turned her back to write on the board, most of the children began shouting. When some of the kids (not Timmi) used some very rude language, the principal turned back angrily.
“Who shouted just now?” she asked. “Everyone who spoke now, raise your hands!”
Timmi was the only one in the entire class that raised her hand.
Although there had been a cacophony of shouting, the principal took advantage of the fact that someone had admitted to something, and punished Timmi. Only Timmi.
Yes, school, like life in general, can certainly be unfair.
Timmi was absent from school for a year, spending all of seventh grade on chemotherapy and a bone marrow transplant and its aftermath. While she was away, her classmates at first came in large groups to visit her in the hospital, relating mostly to each other. Quite soon afterwards, they stopped coming altogether except occasionally when prodded by their parents. During that time, no one thought of speaking to them as a group about Timmi’s illness and the fears for their own mortality it must surely have awakened in them. (This is routinely done in Israeli schools after terror attacks in the same city.) So when she came back to school, they weren’t ready for the reunion – and neither was she, although she tried to prepare herself.
When she started eighth grade, Timmi made a resolution that, for the sake of harmony, she'd be more accommodating than she had been in grade school – that she wouldn’t necessarily always say everything that was on her mind. Her year-long absence would provide her with the opportunity to start again, and this time she'd be more tolerant and not so quick on the draw if she felt slighted.
Well, there are some things that are simply not tolerable. That the other children didn’t know how to ask questions and talk to Timmi about her experiences over the last year – that’s understandable. After all, what in their experience had taught them how to do that? But when conflicts arose, as they inevitably do – even when you’re trying your best to keep the peace – then, suddenly, her special situation became relevant. “You’re using your illness as a weapon!” some of her classmates would say when angry at her. The teacher and school counselor did nothing useful – their interventions (which were in any case few and far between) sometimes made things worse.
(Danny went through something similar at his school. In conflicts with him, some of the boys in his class would taunt him with “Your sister has cancer!” and, later, with “Your sister died!” I wouldn’t have believed it had it not happened to my own son.)
One of the things I would do over if I could is that I'd find a psychologist or social worker who specializes in this field and pay her privately to come to Timmi’ school, talk to the children about cancer and their reactions to it, and teach the staff how to react sensitively to issues that arise between Timmi and the other children. At the time, I was too overwhelmed with Timmi’s medical care and my other children’s emotional health to think of doing that.
Timmi again had a fresh start in ninth grade, when she started high school with a new group of girls. This time, she resolved even more fervently that this time she was going to do it right. On the day of the Israeli Cancer Society’s annual fundraising drive, she spoke to the entire student body of the school. She described what a real difference the Cancer Society and similar organizations had made for her, and to other children with cancer. She even brought a videotape of kids riding on donkeys at a special summer camp she had attended, and stopped the tape as the camera focused on her. In the tape, she was very thin and bald, and looked like nothing so much as a Holocaust survivor.
“This was me,” she said, “and even when I looked like this, I could have fun like any other kid.”
She then added, “If anyone has any questions, I would be very happy to talk with you about my experiences.”
No one took her up on the offer. And if she brought the subject up herself, the other girls would look very uncomfortable and either end the conversation or change the subject as quickly as possible.
Timmi felt terribly isolated in school. After having faced death and gone through extremely painful and difficult physical and emotional experiences, she was in some ways mature far beyond her years. But at the same time, having missed out on the normal social experiences of children her age, she was much younger emotionally than her classmates. The girls would be chatting on about the things teenagers talk about, and she would sit there thinking, “What are they talking about? How can this be important to them?” With no one to share her most important life experience, she made no close friends. And when she was diagnosed with the relapse at the beginning of eleventh grade, she hid the fact for several months because she was so afraid of being once again seen as completely different.
Ironically, it was when her physical condition made it impossible to hide her illness any longer that Timmi finally began to have something of a group of friends. When she finally agreed to “come out” at school, I decided to make my own fresh start and "do it right" this time. I spoke to her favorite teacher and explained how to tell the girls in the class that Timmi's cancer had returned. I gave her very specific instructions to pass along to the students on how to act with a peer with cancer. I said they should relate to Timmi totally normally unless she needs help, in which case they should offer it as if it’s no big deal. They shouldn’t look at her with a mournful expression, but if she brings up the subject they should listen empathetically and ask any questions they have in a matter-of-fact way. In other words, go with where she is at any given moment. Being older now, the girls got it, and treated Timmi the way she wanted to be treated. By the time of my update, when she was starting twelfth grade, she finally had a peer group.
But Timmi never did make really close friends. Eighteen is still too young for a healthy person to know how to take the risk of that kind of closeness with someone your age who is facing death, and perhaps too young for a dangerously ill young girl to know how to transcend the deep difference between herself and her peers. All of our family has experienced something similar. Living through Timmi’s illness and losing her has made each of us feel alone – that there is no one but each other with whom we can truly share our feelings. How much more so must Timmi have felt?
Now, at the start of both the new school year and the new Jewish year, I pray for Danny – for all my family – that we'll make and deepen relationships with those who have not had our experience. I pray that what we went through won’t impoverish our ability to relate to other people, but will enrich it. Most of all, I pray that our pain will build not walls of isolation but bridges of empathy and love.