December 26, 1999
Since last Friday (December 17) Timmi has been sleeping in the hospital, and is in "isolation". This is not as scary as it sounds; all it means is that she should not have too many visitors at once, and that whoever goes into her room should wear a mask and wash hands first. Also, no flowers and no food from restaurants. We are now at day "minus one" or "minus two", which means that the transplant itself will happen tomorrow and/or Monday. So far the preparatory drugs, although they are purposely destroying her immune system, are causing far fewer side effects than she had the first transplant around. This means that she is feeling relatively energetic, and her mood has been quite good. There was one day that she received a particularly nasty drug and felt quite awful, but got morphine which helped her get through pretty reasonably. Also, there were two days in a row when she had to take 120(!) pills each day, which was no fun. But Friday morning she managed to spend about two hours working on the Escher jigsaw puzzle that she is putting together, so as I said she's in pretty good shape. Shabbat also went relatively well, with Don as usual staying with her in the hospital.
By the way, Don slept there for seven out of the eight nights she has so far been hospitalized, because flu season made Shari and Ma'ayan (a friend of Lisa’s who sometimes sleeps with Timmi at the hospital) unable to be with Timmi. The coming week looks to be easier from that point of view, although if things don't go well we may decide that a parent should be there. As for me, I am quite tired, as I spend just about all day every day in the hospital. Right now my life is paradoxically slow but stressed - there is not that much for me to actually do at the hospital, although I need to be there, but I leave each evening feeling exhausted. Shabbat was nice, though, and I feel more rested now.
Thank you all for your continued love and support. Shavua Tov.*
*Shavua Tov – Have a good week.
January 7, 2005
The outpouring of concern and aid to the victims of last week’s tragic tsunami makes me think again how extreme situations often bring people to incredible levels of hesed (lovingkindness). Our family certainly experienced a great deal of hesed while Timmi was sick. I’ve already written about the love and assistance we received from our religious community.* But while many people did a great deal for Timmi and our family during her illness, there were some who went to a huge amount of trouble to help us all get though those terrible times.
There was Debbie G., who arranged the logistics of all the help we received from our community, from Shabbat meals to rides to the hospital. There was my close friend Tova, whom I could always call (even at the last minute) if Timmi was to be hospitalized over the weekend, and she would host me and whatever children were at home for a Shabbat meal. There was also Ma’ayan, who slept several times with Timmi in the hospital, despite the emotional and physical difficulties of spending time in the children’s cancer ward.
Don, of course, spent innumerable nights in the hospital, closely followed Timmi’s nursing care to make sure she was getting the correct medications at the correct times, and did a million other things that a devoted parent does for a seriously ill child. Lisa freely gave her own bone marrow in the hope that it would save Timmi, and suffered pain for several months afterward (more about that in my next post). Don’s extended family also made great efforts to help in any way they could. Don’s brother’s wife, Malka, for example, worked at the hospital and visited Timmi just about every single day that Timmi was hospitalized. Malka also used her connections in the hospital to ensure that Timmi always got the best care, and once even arranged for some surgery that Timmi needed to be performed free of charge by a senior surgeon at a private hospital. Timmi’s grandmother (Don’s mother), who was not in good health at the time and rarely left her home city, took three buses in each direction almost every week to visit Timmi during her first illness.
But it was Shari – two years older than Timmi, and the sister closest to her (in age and in other ways) – who did things for Timmi that went way beyond what a sister (and a teenager at that) might have been expected to do. In fact, in all the time I was with Timmi in the hospital, I never saw another sick child’s sister or brother do as much for the child as Shari did for Timmi.
Shari slept at the hospital a good number of the nights Timmi was hospitalized, both during Timmi’s first illness (when Shari was only 14) and after her relapse. She and Timmi used to stay up late giggling watching TV and eating together (if Timmi could eat) all the candy and other junk people brought Timmi as gifts. Shari was very competent, knowing exactly how to react and when to call the nurse if there was some special problem. Also, she could sleep just about anywhere, which was one of the reasons she slept with Timmi at the hospital so much of the time. A hospital is a very noisy place at night, with machines beeping, nurses and parents calling to each other, and other children in the room receiving urgent medical attention at all hours of the night. Shari was able to sleep through it all. She slept so well, in fact, that she just about never got up early enough to make it to school on time, which I suppose was an advantage as far as she was concerned – the perfect excuse to be late to school!
The only problem with Shari’s sleeping pattern was that she slept so deeply that Timmi couldn’t wake her up if she needed help in the middle of the night. The two of them eventually solved the problem by deciding that Timmi would wake Shari by throwing a shoe or some other object at her. What can I say? It worked.
Shari’s willingness to be awakened in the middle of the night by having a shoe thrown at her was only one manifestation of her exceptional kindness to Timmi. She was always willing to run and do just about any errand, whether Timmi was in the hospital or at home. She spent a huge amount of time with her, often missing outings with her own friends, when Timmi seemed lonely.
The story that best expresses Shari’s lovingkindness toward Timmi, I think, took place during first series of hospitalizations. Timmi’s grandmother had brought her some special stones (I remember one was a “Tiger’s Eye”) that are said to have special healing powers. Timmi, who loved her grandmother very much, wanted the stones near her at all times, and kept them in the pocket of her hospital pajamas. One morning, the nurse brought Timmi a new pair of pajamas so that the old one could be laundered. After the pajamas were taken away, Timmi realized that the stones had been sent to the laundry as well, and became extremely distressed.
Shari simply went to the hospital laundry room. She wasn’t put off by the hundreds of identical, dirty pajamas and hospital gowns piled on the floor of the huge room, but went through the pockets of every pair of pajamas until she found the stones and returned them to Timmi.
I believe very strongly that loving acts of kindness give not only to the people to whom they’re directed, but also to those who perform them. I saw a touching example of this two days ago, when I paid a condolence call to Charlie G., whose 38-year-old daughter Elisheva died a week ago after a short and brutal illness. I was sitting with him listening to him speak about his daughter, who was a writer and an actress, as Timmi had aspired to be. A young man came over and introduced himself as one of Elisheva’s creative writing students. As he spoke of her, he was overcome by sadness and started crying. Charlie moved over to him, took his hand, looked into his eyes, and remained that way until the young man stopped weeping.
At first, I was uncomfortable with sight of Charlie comforting his daughter’s student, and thought the student self-centered for letting himself cry that way – after all, Charlie’s loss was so much greater! It reminded me very vividly of my own experiences of people coming to me in tears when Timmi was diagnosed and after she died, and my feelings when I found myself comforting them. Like Charlie, I’d find myself touching these people on the arm, sometimes stroking them, and smiling to let them know that I knew how they were feeling. There was a period when I resented this, feeling that it was unfair of these people to demand so much of my own terribly depleted store of energy.
But reflecting now on Charlie’s gesture, and on my own similar actions all those years ago, I see that there was something deeply healing in our ability to give strength to others even in the midst of our own unspeakable tragedy. Far from draining us, these acts really gave us strength and comfort when we most needed it. In comforting others, we were helping to heal ourselves.
In the end, and more than anything, it is lovingkindness – both to others and to ourselves – that can sustain us in a cruel world and help us become the best human beings that we can be, even at the blackest of times.
* See “Community,” October 2004.