Sunday, June 19, 2005

The Long Version and the Short Version

June 8, 2000
Timmi came back from London this morning. She was so sleepy that she couldn't tell me, really, how the trip was; my impression was that there were good things and hard things, and how she remembers the experience will be dependent on her mood at the time of recollection. I do hope the good things outweighed the hard things, especially in light of the effort we made to get her there and back.

I mentioned in my last message that the group's flight had been scheduled to take off just under an hour after Shabbat went out. The organizers assured us that if Don and Timmi left right after the end of Shabbat, they would be able to delay the flight so that Timmi could be rushed through check-in and board the plane. Well, that was optimistic. The flight was not delayed, and Timmi missed it. (This is after our car broke down on Friday and just before Shabbat Don had to find a car to borrow to take Timmi to the airport - the G’s were kind enough to lend their car, though they were planning on going out after Shabbat. And after I rushed to the hospital an hour before Shabbat to get some medical equipment that we normally have at home for Timmi's use but that she had not noticed was used up.) So she and Tehilla checked in "early" Saturday night and took a cab to the airport for a flight the next morning.

This morning, the group arrived at 5:40, and Don got up at 5:00 to go get her. Halfway between Jerusalem and the airport our car, which had in the meantime been in and come out of the garage, broke down again. He got home only four hours later; in the meantime, Timmi called home to see what was happening (she waited for some time because she did not get the message I left at the airport) and ended up taking a cab again. As I said, she got home very tired and went to sleep right away.

While she was in London, Mike G's brother Joe sent Timmi all kinds of kosher food, when he heard from Barbara and Mike about the food problem. Not having yet spoken to Timmi about her trip, I don't know how much of the food actually reached her, with all the touring that the group did, but it was exceedingly sweet of him to do this.

My own health was up and down this week; in general I am feeling emotionally quite a bit better and physically somewhat better. I have been taking the Shiitake mushroom extract that we got from France for Timmi and which helped her get through her chemo a year ago. Maybe that's the reason for the improvement, maybe not. You know how these things go.

I have decided to try to get back into some kind of a professional life. Although what I really need is to get out of the house and work in a separate space (with my own desk etc.), most preferably, of course, in mediation, I have decided in the meantime to do legal translations. I hated doing these when I first did them years ago - writing by myself is infinitely better than translating someone else's writing - but I am quite good at it and it is a way to get some professional activity into my life and make some money (not much so far, but better than nothing). Also, it is flexible, and doing it during the morning hours isn't nearly as bad as in the evening after a full day of work. After not working for so long, it's even enjoyable to some degree.

I wish all of you a happy Shavuot* and Shabbat Shalom. Though I don't always answer your individual messages, I do read them and your good wishes and prayers mean a great deal to me.

*Shavuot – the Festival of Weeks, which falls seven weeks after Passover and celebrates the giving of the Torah on Mount Sinai.

June 18, 2005
I’ve been telling this story for years now. From the beginning, I’ve had the problem of having to decide how much detail to tell to whom, and how to relate the detail that I do decide to include. Even while Timmi was alive, and it was only a matter of describing the most recent developments, I often found myself at a loss for words when people asked me what was happening – not for lack of events to describe, but because I couldn’t decide how to answer. Should I relate only to the bare facts, or is my listener interested in hearing more detail? Should my tone be matter-of-fact, or should I allow myself to express my feelings? Giving a quick, dry version might seem dismissive or unfeeling; too much detail might bore my listener; too much emotion would almost certainly overwhelm me and might well overwhelm my listener as well. It was partly because of these difficulties that I started sending written updates to the members of my community. That way, at least, I could write as much or as little detail as suited me at the time, and I wouldn’t have to deal with people’s (usually awkward) reactions.

I’ve developed many different ways of recounting this saga. But none seems sufficient, none seems accurate enough. When a friend came to Israel recently whom I hadn’t seen in many years, it was clear that when she asked me to tell her Timmi’s – and our family’s – story, she really was interested in hearing all of it. I was glad to have someone who truly wanted to listen, so I tried to give her the full version. I started at the beginning, with the first symptoms and the six months it took to diagnose Timmi’s leukemia. I went through the story step by step – the treatments, the transplants, the side effects and secondary problems, the emotional consequences… I wanted so very much to paint a full picture. But at a certain point I had to speed up and finish quickly, because my heart started beating out of rhythm – very fast, then very slow – and I realized that the stress of reliving the narrative through its telling was taking too heavy a toll on me.

On the other hand, telling too little also has its price. Since I’ve been here in New York, I’ve met many new people, both in my MSW program and in the neighborhood in which I’m staying (Manhattan’s Upper West Side). At school, the question most often asked of a first-year student – both by the other students and by the teachers – is: “Why did you decide to become a social worker?” People outside of school often ask this as well. To answer truthfully, I would need to explain how my decision grew out of a complex process that was precipitated by Timmi’s illness and death. But these are relatively casual conversations; there’s no time to go into any kind of detail. So I’ve created a short version of the narrative, which can be told in five minutes or less. I’ve been relating this version over and over since I arrived here; I must have told it 15 or 20 times in the last three weeks alone. But repeating this abbreviated version – the bare facts, without the emotional content – time and again makes me feel numb. How can I speak of Timmi’s illness and death as if they were facts like any other? I can feel this constant repetition separating me farther from my emotions than I want to be. It feels dry, heavy, and deadened.

Another quandary arises when people ask me how many children I have. The question is so simple for most people – the obvious one to ask a person my age – but a minefield for me. I certainly can’t say “six,” and saying “seven” gives the wrong impression. So I recount the shortest version of all: “I raised seven children, but now have six; my daughter Timmi died of cancer about four and a half years ago.” Again, I have a choice; I can break down and cry, or I can keep my upper lip stiff and cut myself off from my emotions. Just about always, I choose the latter. Telling the basic facts with no show of emotion on my own part discourages my listeners from getting over-emotional, which I find very hard to deal with. At the same time, I would be even more upset if, upon hearing that I had a child who died, my listener failed to react at all. The short version makes it easier for me if my listeners display no emotion after hearing my story – after all, I’m the one who has st the dry tone. Also, it’s not appropriate to get “touch-feely” with every person and in every situation; quite the opposite is true. I don’t need every first conversation with a new acquaintance to turn heavy and mournful. So I cut off my feelings and pay the price. And that price is very high. I think that one of the reasons I can’t cry about Timmi nearly enough as much as I feel I need to is that I’ve gotten used making sure to keep my own and others’ eyes dry while I tell my tale.

You may well ask, so why get into it at all? Why not say, “I’m doing this MSW program because for years I’ve wanted to become a psychotherapist and this is the most efficient way to do it”? And why not respond, when asked, “I have seven children”? (As I mentioned, saying I have six children is out of the question.) Both answers are true, after all, and don’t pull me into a conversation about Timmi.

The fact is that I feel a need – almost a compulsion – when I meet someone new to tell her of my beautiful, lost daughter. Talking to someone, without his knowing that I once had a daughter who is no longer in this world, simply feels like a lie. This does not apply absolutely all the time, of course. For example, I love hearing about the lives of cab drivers – it gives me a chance to find out about people I usually wouldn’t meet. So I sometimes ask how many children my driver has. If, in return, he asks me how many children I have, my answer will be a simple “seven.”

But when I know I’m going to meet a person more than once, and especially if I’m going to have some kind of an ongoing relationship with her (even in a superficial relationship such as that of fellow-student or casual social acquaintance), I feel an overwhelming need to bring up the subject of Timmi. My sense of self is now so caught up in my bereavement that I feel as if I’m introducing not myself, but another person, if I fail to mention it. What makes this especially hard is that since Timmi died I’ve felt very uncomfortable in superficial conversations. I get impatient and frustrated in the absence of meaningful communication; only when Timmi's memory is part of the framework of a conversation do I feel that my interlocutor and I are communicating in any true way.

So, you may ask again, why do I need to have a meaningful connection with every single person I meet? Because I feel so cut off from the rest of the world that I feel compelled to explore every potential way of reconnecting. Like other bereaved parents, I feel as if a wall has been erected between myself and the rest of humanity. It’s so lonely here that I must keep trying to create any possible opening that will allow true contact between me and those on the other side. The wall isn’t as thick as it used to be, and there are now a few openings that let in some light. But it’s still there, and I’m still very lonely.

Telling the whole truth is also the only way to find those people who can most understand me – other bereaved parents. Last week, I was invited for a Shavuot meal by a woman I’d met the week before at the home of some friends from Israel. When her other guests began asking me the usual questions, I answered with the short, dry version of my story. To my surprise, Judy (my hostess) began speaking of the terrible difficulties faced by the siblings of very ill children. When I asked if she had personal experience with such problems, she revealed that she’d had a son who died of a brain tumor eleven years ago, after thirteen years of illness. She and I were then able to share and connect in a way that would have been impossible had I not brought up the subject. Judy herself wouldn’t have mentioned her own loss, because her way of dealing with the dilemma of what, how much and to whom to tell her story is almost never to talk about it. Now I feel a bond with her, and I hope she feels one with me. I (we?) feel just a tiny bit less alone in the world.

Perhaps most important, speaking of Timmi is one way of keeping her memory alive. One of the students in my program told me that when I relate my story, she feels as if Timmi is present and part of the conversation. I told her that nothing she said could have made me happier.

If people would let me – or, more accurately, if I would allow myself – I could easily speak all day, every day, about Timmi, her journey through a fatal illness, and my family’s and my own journey. The full version of our story would take a lifetime to relate. But that would leave us in the same place forever. We do need to move ahead in our lives; I know Timmi wouldn’t want us to spend the rest of our time on Earth incapable of relating to anything but her loss. The challenge is to find a balance in which we move forward but at the same time hold within us our precious memories, and to allow those memories to inform our lives but not totally overwhelm them.

And so I will continue to relate my story, sometimes in longer versions and sometimes in shorter versions, in search of that balance and in the hope of creating true relationships - relationships in which I may be be my authentic self and others may bond to that true me. And my most fervent hope is that for so long as I continue to tell our tale, both these others and I will continue to feel the presence of Timmi’s spirit.

Thursday, June 02, 2005

To Share or Not to Share

June 2, 2000
This week we may be seeing some progress - Timmi has reduced the dose of her painkilling patches and has somewhat less pain than she did with the higher dose. So we hope that means that the tumors are shrinking. Also, she has some symptoms that may be indicative of GVH, which would be consistent with shrinking tumors. We hope the trend will continue, without her getting too much GVH as in the past.

She is greatly looking forward to her four-day trip to London this coming week, with the "Chaim" organization that does good things for kids with cancer. The only problem is that they will be eating only in non-kosher places, so Timmi is bringing lots of dry stuff with her. Also, the plane leaves one hour after Shabbat goes out, so Don will have to leave with her immediately on Saturday night, deliver her to a special place where someone will be waiting only for her, and the plane may also have to wait for her. All in all, very nice and well-meaning, but it's quite astonishing how some Israeli Jews can be so unaware of the constraints of religious people. But it does work out that she can go, so we're happy about that.

I have continued to be sick this week, to the point almost of physical/emotional collapse (I can't tell the difference), but have started feeling much better in the past couple of days.

Shabbat Shalom to all.


June 1, 2005
A week ago I flew from Israel to New York; today was registration and orientation for the MSW program I’m starting tomorrow.

On the plane, I sat next to a married couple who were on their way to Barcelona for a week. They must have been in their late twenties or early thirties, and were obviously very much in love. After they squeezed past me to get to their seats, the woman (I’ll call her Rona) took off her hat to reveal an almost completely bald head with some sparse, very short hair. At that point I also noticed how thin she was. Ah, I thought, she’s recently been through chemo, or radiation, or both.

My first impulse was to ask about her cancer – What kind? When did she discover it? – and about her treatment – For how long? At what hospital? Will she have to undergo additional treatment? I wanted to connect with her, to tell her that I know what she’s going through, and to express my fervent wishes for her full recovery. But then I thought again. Yes, I could have a sharing conversation with her, full of mutual empathy and understanding. I always get a great deal from conversations like that, and perhaps I could do something good for her as well. But any conversation in which we would share our common experience would also have to reveal the end of Timmi’s story. And that, I believe, is the last thing in the world a recovering cancer patient needs to hear.

I was strongly reminded then of an experience I had shortly after Timmi died. I was sitting in a coffee and sandwich bar in Jerusalem’s main mall when a woman brought in her daughter in a wheelchair. The girl was very thin, and wearing a hat over what was obviously a bald head. I wanted desperately to approach them and compare notes – if only to ask who the girls’ doctor is, maybe trade hospital stories. And, of course, while Timmi was still alive that was exactly what I would have done. It’s so very rarely that I ever get to talk with another mother going through cancer with her child – someone who can actually understand at least a part of my own experience. It’s so very lonely where I am. But I had to stop myself. Were I to go up to them, they would inevitably have asked, “And how is your daughter today?”

As my plane ride to New York progressed, I felt increasingly physically ill. Eventually, I became sick, and unfortunately could not find the air-sick bag in time. I felt very bad for Rona and her husband. Here they are, I thought, off to have a good time after a difficult period, perhaps to celebrate the success of Rona’s treatment. Haven’t they had enough illness and unpleasantness? But Rona spoke to me with kindness and empathy, and even made practical and helpful suggestions. It was so clear to me that her own experience had taught her to empathize with, and respond to, my predicament. But I couldn’t reciprocate by showing her my own empathy for her, by sharing with her what we have in common. My daughter’s story is Rona’s worst nightmare come true.

Since I’ve begun meeting the other students in my MSW program, I’ve told my story many times; I’ll write more about that in my next post. But I’m still left with a lingering sadness for the relationship, however brief, that I might have had with Rona. As I watched her and her husband walk away from me in the airport, I had to restrain myself almost physically from running after her to give her a hug and tell her of my hope that God will bless her with a long and healthy life.

And so all I can do is to express that wish here, and pray that even if I wasn’t able to share it with her directly, it will reach her wherever she is today.