Monday, August 09, 2004

Deciding to Write

July 22, 1999
I have decided to update the Kehilla on Timmi's condition, to the extent I can, by email rather than orally at Kiddush because it is somewhat tiring for me to go into the whole story each Shabbat, and also because not everyone comes to Shul every Shabbat, so I end up telling the story several times each week when I run into people. For those of you who read this, thank you immensely for your interest, and if you have any questions regarding the contents of my updates you are more than welcome to come up to me at Kiddush and ask - I just don't want to have to go into all the facts over and over.

Timmi and I were supposed to be in Paris together last week. She had joined the Zichron Menachem camp for children with cancer, and the camp was to go (and did in fact go) to Paris for four days at the end of the camp. I was to meet Timmi in Paris at the end of their stay, and stay with her there for another week at the home of a high school friend of mine. Unfortunately, while at the camp Timmi started feeling very bad, both physically (she had both pain and a bad reaction to her pain medicine) and emotionally, so that she had to come home early from the camp. Because she missed Paris, I took her last week for three days to Tel-Aviv to do fun things with her there, but because of how she felt she was unable to enjoy more than a few hours of our time there. On our way home, we stopped at Sha'are Zedek Hospital and consulted with Dr. N., an oncologist and pain specialist, who completely changed her pain medicines. In addition, he suggested that Timmi may be suffering from a clinical depression, and that we may want to treat her with anti-depressant medication.

In addition to her other problems, Timmi has had for the past week or more difficulty drinking - it gives her stomach pain and nauseates her. As a result, when we arrived at the hospital on Sunday she was quite dehydrated, which of course we now realize had made her depression worse. Rehydrating her made her feel much better, but both she and the hospital staff decided that it is best for her to take an anti-depressant in order to prevent the depression from recurring. Since then, she has been up and down several times, but we hope once the medication kicks in she will start to feel consistently better, at least emotionally.

As for her physical condition, she has been hospitalized since Sunday for more aggressive chemotherapy than she has received so far this time around. Her pains are, if anything, becoming worse, which is difficult to interpret - it may be a sign that the chemo is starting to work. We certainly hope so. If all goes according to plan, she will leave the hospital Friday and go in for treatment four times a week over the next three weeks, as an outpatient. We have some natural stuff that is supposed to help with the side effects, and hope it will work. At any rate, she will soon lose her hair but has already got the wig she ordered, and likes it, so the hair loss should hopefully not be too much of a trauma.

So many of you have offered to help with physical things - errands, cooking etc, and we are really very grateful. There is still little anyone outside tha family can do, but I did think of one thing - on Shabbat I cook for my kids rich cheesy dishes that I myself have trouble eating, as it seems I have developed a certain degree of lactose intolerance in my mature years. I would therefore greatly appreciate receiving one parve main dish every Shabbat, preferably in a disposable pan, to save me some cooking at least. Anyone willing to help should call D.G. to coordinate dates.

Thank you all again for your love and support.

July 28, 2004
As I decided to start writing regularly five years ago (almost to the day), so I’ve decided, finally, to start writing again.

A great many people have suggested that I make these email updates into a book. I was told that the updates were followed avidly and even eagerly anticipated by their readers, whom they touched deeply. People felt that the updates helped them, by example, to deal with hardships, traumas and losses in their own lives, and that a book could reach – and perhaps help – many more.

The fact is that I myself found a great deal of comfort in writing these messages. It may be that writing helped me get a handle on what I was going through – if only by putting it into the language that we all use, in a form that could be looked at, reacted to and stored as a tangible “thing.” Did this help make sense of it? I don’t know. I do know that I express myself more thoughtfully in writing than orally, and so the act of putting my experiences, Timmi’s, and our family’s on paper may well have lent a certain organization to circumstances that are by their nature chaotic and incomprehensible. Also, in writing I was able to reach out to other people, to include them, without having to deal with their “real-time” reactions to what I was saying – whether over-serious/over-emotional, or not serious/not emotional enough (in fact, it was impossible for anyone to get it just right; more about that, probably, in a future installment).

So I’ve been thinking of writing again for some time. But I’ve been blocked. For years, just sitting down at the computer with the intention of writing anything personal has caused a wave of exhaustion to wash over me. Clearly, I wouldn’t be able to find the right words, the right tone, the right anything to make what I write worth reading. I admit it, I’m scared. What if the only things that come out are trite, boring, over-dramatic, stilted? What if all I have to say has been said a million times before? What if I can’t say what I need to – or have nothing to say? What if I really do have nothing to offer? I feel like I’m taking a real risk. Recent conversations with friends, though, have inspired me to just go ahead and try. I know it won’t be easy. But if this journal manages to express even a small part of that something for which there are no real words, then it will have been worth it.

So here they are, my reflections five years later on the experiences that changed my life, and that of my family, far more deeply than words are capable of conveying. But, in the end, I believe that God gave us words so that we may use them to reach out and share with each other.

Glossary for this update: the Kehilla is the religious community in Jerusalem of which I am a grateful member. Shul is Yiddish for “synagogue.” Kiddush is the ceremonial drinking of wine after Shabbat (Sabbath) services. Parve means neither milk nor meat.


houseofjoy said...

Congratulations on starting your blog. I think that your journey has the potential to provide a lot of strength and support to people.

Seraphic said...

I read your comment in my blog Seraphic Secret and immediately came to visit you and Timmi. What can I say? I wish I could have known your daughter. I am sure that she was an amzing and lovely child. I will continue to read your blog and maybe I will gain some insights, some wisdom, and learn how best to cope with the loss of my son Ariel. May you be comforted among the mourners of Zion.

Robert J. Avrech

Rochelly's Kitchen said...

I have been writing to Seraphic Secret since June, 2004.
In fact, my husband and I were in California at the end of June and we went to meet Robert and Karin. It was a very inspirational and comforting visit. As a result of this visit, Robert wrote an article on his blog called 'Rochelly's Kitchen', abou my daughter who died eleven years ago at the age og 17 from a brain hemorrage. I admire you both for writing regularly about your lost children. Keep it up; you are doing a great job of keeping your daughter's memory alive.