October 28, 1999
On Tuesday Timmi left the hospital after being admitted with her expected fever at candle-lighting time last Friday. This was, hopefully, her last hospitalization before her transplant, which is scheduled to take place in about a month. Her mood is still reasonable, especially as we are planning a trip to Paris for two of the weeks before the transplant! In that context, we would be really glad to receive the names and addresses of your favorite kosher restaurants in Paris (whether milk or meat). Also, if anyone could bring to synagogue the French Rabbinate's most recent list of kosher products, I would greatly appreciate it.
Also, it is time to start organizing for platelet donation during Timmi's hospitalization for the transplant. For those of you who were not members of the community when Timmi had her first transplant, or who don't remember, platelets are the blood cells responsible for clotting. Chemotherapy, especially the intensive kind that precedes a transplant, destroys blood cells in general including platelets. In order to avoid the danger of excessive bleeding, transplant patients must receive transfusions of platelets; each patient is required to bring his or her own donors.
[Here I gave instructions on how to donate platelets, and the criteria for who can be a donor.]
If you already went through this four years ago, you still need to be re-tested (sorry); those who were disqualified for "temporary" reasons (because of your particular state at the time) are welcome to try, try again.
Once we have the list of qualified donors, we will start scheduling the platelet donations themselves; these will commence about a week before the transplant. The donor should plan on spending about two hours at the hospital. Please do not be late for the appointment.
If you are interested in being tested, please call D.G., who will be coordinating the effort; the hospital does not want more than five people showing up to be tested for the same patient on any one day.
Thank you all in advance for your willingness to do this for us.
October 28, 2004
One of the things I’m the most grateful for in my life is the religious community I’ve found here in Jerusalem. People here are warm, welcoming and caring. But ever since Timmi died, I’ve not been able to feel the same sense of belonging. While that “otherness” has faded somewhat, it will probably last for the rest of my life. In a sense, that feeling is another loss to mourn.
I’ve always tended to be somewhat different from most other people, and for most of my life didn’t really fit in with groups. So it was only after our family moved to Jerusalem and joined our synagogue and community nineteen years ago that I felt, for the first time in my life, truly “held” by a body of other people. My Kehilla (Hebrew for community) is a million things at once. We pray together in a way that everyone feels included. Our members truly like and respect each other, know how to have fun together, and have no patience for the kind of malicious gossip that so often characterizes groups of people who spend a lot of time together. Most of all, our community is the most thorough and effective support system I’ve ever seen.
I like to call the people who belong to our Kehilla “foul-weather friends.” When members are physically weak or emotionally overwhelmed after having a baby or due to seriously illness, people in the Kehilla take care of many of their needs. When a member loses a close relative, his house is packed with visitors every day of the seven-day mourning period. Members in financial difficulties know they can turn to the Kehilla’s charity fund for help. And people help each other find jobs, housing, babysitters... The list is almost endless.
When Timmi became ill, there was an outpouring of love and attention the likes of which I’d never seen before (and have not seen or heard of elsewhere since). Our community’s generosity – with time, with effort, with patience – was amazing. People cooked food for us almost every Shabbat for the full year of Timmi’s intensive chemo and first transplant, and after that whenever her hospitalization prevented us from preparing our family’s Shabbat meals by ourselves. The Kehilla made sure we were financially secure despite the very high additional expenses involved in a long-term illness and frequent hospitalizations. People counted it a privilege to be allowed to sit for two hours attached to a machine in order to give blood parts – one woman even wrote a short story about how donating platelets for Timmi was a deeply spiritual experience!
People practically begged us to allow them to help – the demand for things we needed others to do for us far outstripped the supply of things we could give them to do. Our close friend D.G. even took on herself the job of coordinating help for us, so that we wouldn’t have to look for volunteers to help us every time we needed it, or deal with the constant flow of call from people telling us how much they wanted to help.
All this, together with the deep concern with which everyone followed Timmi’s story (“How is she today? Has the treatment been hard on her? Is there anything I can do? She really is amazing!”) gave me an anchor in the terribly frightening and insecure periods of her first illness and of her relapse. I felt I wasn’t alone, that others were sharing at least a small part of what our family was going through.
So it was a shock and a surprise to me when being part of such a warm community stopped helping me – or felt like it stopped helping me – after Timmi’s death. I felt as if a thick wall had been put up between me and these other people, and that I'd never feel close to them again.
There were some people – even a few of those who’d most supported me emotionally while Timmi was still alive – who stopped asking how I am, or changed the subject when I started getting into anything personal. Most did ask, but didn’t have a clue how to talk to me. Very few people know how to listen sensitively to a grieving parent – how to speak about feelings when that’s what’s needed, and how to help them get their minds off their grief when that’s what would help more. But my problem went far deeper than that. Even if a friend listened empathetically when I spoke of Timmi, it didn’t do me any good. There was no relief of the kind I used to experience when I shared my feelings with someone close; it felt the same as talking to a wall. And while a joke or a story could sometimes distract me from the only subject that was really on my mind, the distraction only lasted as long as the conversation went on.
I was hurt, angry and frustrated. Why couldn’t anyone get it right? If a friend avoided the subject, I wondered how she could be so callous as to avoid asking how I am. If someone did ask, I said to myself, “What kind of stupid question is that? Isn’t it obvious how I am?!?” And what was wrong with me – why were love and empathy failing to do anything for me?
I understand now that there wasn’t any way people could get it right. There really was a wall between us – it was my child who had died. There could be no relief in sharing my feelings, because in the end feelings can only be truly shared with others who understand them. As long as there was hope for Timmi’s recovery, other people could relate (to some extent) to what we were going through. After all, most parents have been frightened for their children’s safety, and have exhausted themselves caring for very sick sons or daughters. But no one who hasn't lost a child can understand what it’s like. No one. Although I myself have gone through many very hard and traumatic experiences in my life, the fact is that nothing prepared me for losing Timmi. So could I expect anyone else to understand where I was and how I was feeling?
When I realized that the only thing that might ease this intense aloneness was to share my experiences with other bereaved parents, I joined a support group. Perhaps there I would regain the sense of togetherness I felt I’d lost in the Kehilla. But I found no relief there, either. (I’ll describe my experience with that group in my next post.)
As time has passed, things besides Timmi’s loss – work, the kids’ schooling, friendships – have gradually made their way back into my life. I again share with other people those things that we do have in common. I’m involved again in community issues and activities. I can even say that having gone through Timmi’s illness and death with the people of my community has ultimately strengthened my bond with them. They knew her, after all, many of them loved her, and she mattered to all of them. Even when they didn’t know how to help, the fact that they tried – and tried so hard – now means a great deal to me. If things were so hard for me even among people who cared so intensely, how much more would I have suffered if I'd really been alone?
Still, although I no longer feel an indestructible wall between me and others in my Kehilla, a curtain remains – one that sometimes seems almost transparent, but divides us nonetheless. And I think I’ll never again feel the sense of absolute belonging that I felt before Timmi’s death. Because my life is now divided into two very different parts – before I lost Timmi, and after. I’m no longer the person my community knew when I was a mother of seven children. And my community will never be able to truly know who I am, now that I'm the mother of six.