Sunday, August 14, 2005

Choosing Life, Choosing Faith

July 27, 2000
As I predicted in my last update, this past week has been a difficult one. Friday and Shabbat Timmi’s stomach pains got worse, and she developed a strong pain in a new place in her side; the morphine was not really working to control the pain. On Sunday the dose of her morphine was greatly increased, and a new drug, halidol, was added. This brought the pain more or less under control pretty quickly, although for a few days she was either sleeping from the morphine, or hurting. At times distraction by watching television allowed her to be awake and relatively pain-free, but seldom. A CT scan she did at the beginning of the week revealed that the pains, and probably also her fever, were (are) a result of an intestinal inflammation. Therefore, she may not eat and may drink only very small amounts. This, of course, adds to her discomfort.

In the last few days her blood counts rose and they are mostly back to a normal level, which has made her feel generally better. She still has a high fever, however, so will stay in the hospital for the time being.

Timmi still shows no signs of GVH, so she may need to receive more T-cell therapy in the near future. Shari's T-cells will be "harvested" again on Sunday and Monday, and frozen for possible future use, because Shari is traveling to the States on Tuesday for an undefined period.

Except for our three and a half day hiatus at home, we have now been in the hospital for three weeks. Luckily, the ward has, for the past week and a half, been able to arrange for Timmi to be in a room by herself, which is certainly vastly preferable to sharing the room with another family, however nice the people may be. This has made this particular hospitalization significantly more bearable, but still I return each evening feeling as if someone had squeezed all the juice out of me. Now I'll get a break, though, because Don stays in the hospital from Friday morning through Sunday morning, which of course exhausts him, but then I take over the days again and our older daughters take the nights (though soon, with Shari in the States as well as Sheila, that will consist of Lisa only, but she is more than willing to sleep in the hospital and even feels better sleeping there when Timmi is there).

I read an excellent book this week, which was recommended to me by Marion and which I found to be well written, well thought-out and in harmony with my theological, philosophical and psychological view of the world. It is called "When Bad Things Happen to Good People", by Harold S. Kushner, and I highly recommend it to anyone troubled by the inherently problematic nature of the combination of three beliefs/phenomena: the existence of an omnipotent God; the belief that God is good and just; and the unavoidable fact that innocent people suffer.

Shabbat Shalom to all of you, and may we all use Shabbat to recover from all of our various hard work and hardships.


August 14, 2005
I would like to warmly thank Deborah Weissman for her learned contribution to this post.

Today is Tisha B’Av, the ninth day of the Hebrew month of Av, when Jews mourn the destruction of our Temple in Jerusalem and our expulsion from our land, in 586 B.C.E and then again in 70 C.E. After each terrible loss, our people questioned whether we could go on, when God Himself seemed to have deserted us. But not only did we survive these traumatic events, but we went on to build new and flourishing communities in the Diaspora. And in our second exile, we adjusted to our new reality by creating a new basis for our faith, one that preserved Judaism and permitted it to continue to develop even in the absence of the Temple service that had been so central to Jewish worship.

After I lost Timmi, I too went through a period of deep despair. But as my people have done throughout the centuries, and as Timmi herself did in the face of indescribable suffering (see my previous post), I have chosen to make what I can of my new reality; in other words, I have chosen life. And although Timmi's death has made excruciatingly apparent to me that God does not always protect the innocent in this world, I have chosen faith.

Psalm 137 expresses beautifully the sense of absolute despair that gripped the Jewish people after we were exiled from our land by the Babylonians in the sixth century B.C.E. The Psalm’s first six verses are well known:

By the waters of Babylon we sat and wept, as we remembered Zion.
On the willows there we hung our harps.
For there our captors demanded of us songs, and our tormentors, mirth: “Sing to us a song of Zion!”
How shall we sing God’s song in a foreign land?
If I forget you, Jerusalem, may my right hand wither!
May my tongue cleave to the roof of my mouth, if I do not remember you, if I do not set Jerusalem above my highest joy!

How could the Children of Israel sing God’s song in a foreign land, where God seemed to have deserted us? And how could I, more than 2,500 years later, sing any song at all, after a loss so crushing and so incomprehensible as the loss of my daughter?

In the immediate aftermath of Timmi’s death, I went numb. I could feel neither joy nor sorrow; I could not even weep like Zion’s exiles. As the truth set in that I had lost her forever, I sank into a depression deeper than any I’ve ever experienced – deeper than any I might have thought possible. I lost the desire to do just about everything, and the ability to do anything other than what was strictly necessary to keep my family going. Many times I felt that I did not even want to go on living. I would never have deserted my children by ending my own life, but the thought of having been left behind in such a cruel world was unbearable. Had God, whom I had thought merciful, deserted me?

But God's command to choose life is too strong, and too central to Jewish consciousness, to allow despair to triumph forever. Through His prophet Jeremiah, God told the exiles in Babylon to rebuild their lives: “Build houses and live in them; plant gardens and eat of their fruits. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease” (Jeremiah 29:5-6). God did not wish His people to enter a state of perpetual mourning, which would have caused the Jews to wither away and, ultimately, to disappear from the face of the Earth.

Almost six hundred years later, when the second Temple was destroyed, the Jews who lived in the land of Israel faced a similar choice. They could go the way of the Zealots of Masada, who killed first their children and then themselves rather than accept the reality of loss. However, Rabbi Yoḥanan Ben Zakai, one of the greatest of the Mishnaic Sages, chose a different way. He gathered around him the other surviving religious scholars and set off to found Yavneh, a new community about 30 miles from Jerusalem. Together, these Sages began the process of creating new religious forms that would sustain the Jewish people throughout almost 2,000 years of diaspora – a Judaism not dependent on the existence of a Temple; a song to God which could indeed be sung in a foreign land.

Five years ago, Don and I began to watch helplessly as the end of our own private Temple – the home we had created by bringing seven beautiful children into this world – approached, as Timmi began to slip away from us. When the end came, our family was devastated. But as Jews have been doing for more than 25 centuries, we are now in the process of rebuilding our lives, and of trying to make them as meaningful as we can in the face of our trauma and tragedy. And I, like my ancestors before me, am doing my best to preserve my faith in God, and to continue to sing His song in a world that has become incomprehensible.

Where am I to find the strength to do this? Together with Harold Kushner, I believe that when bad things happen to good people, God provides us with a well of strength upon which we can draw to survive our losses and forge new lives for ourselves. This conception is reflected in the Babylonian Talmud: “Come and see how much the Holy One, Blessed Be He, loves Israel. For in every place to which they were dispersed, [His] Presence [remained] with them. They were dispersed to Egypt – the Presence was with them… They were dispersed to Babylon – the Presence was with them… And even when they will be redeemed in the future, the Presence… will return with them from the Diaspora” (Megillah 29A).

God did not desert the Children of Israel after we were exiled from our land, even though at first we felt to the core of our being that He had done so. To the contrary; God has provided us with the strength to survive despite vicious persecution, and with the inspiration to create vibrant communities, a vast body of scholarly literature, and a dynamic tradition that has enabled us to adapt to each new situation in which we’ve found ourselves.

And I, for myself, choose to believe that God has not deserted me, even though I cannot understand His world and even though I can seldom feel His presence directly. As Jews have done throughout the ages, I continue to believe that He will provide me with the strength and inspiration that I need to create a new and meaningful life for myself even in a cruel and staggeringly unjust world. And I believe that He will give me the love that I need to sustain me, as I continue to choose life.


Kay aka Kirsten said...

Sara, thank you for this amazing post and for sharing yours and Timmi's story. I haven't read the whole of it yet, but just this one post has given me much to think on.

Alan aka Avrum ben Avrum said...

Dear Sara,

Once again I know that the time between your posts has been well worth the wait!! I thank you because yours is a model for all bereaved parents. Too often we see-and research in parental bereavement demonstrates this-that there are some parents whose walk through the valley of the shadow of death becomes so interminable-that their new and involuntary identities as bereaved parents preclude them from ever again being able to choose and live life b'simcha! In addition to Harold Kushner's When Bad Thimgs Happen to Good People, see his The Lord is My Shepherd. I further recommend two clinical studies of parental bereavement which demonstrate that many, if not most bereaved parents, find some degree of balance between permanent despair and the ability to live life again with joy-taking pleasure without guilt! The titles are The Worst Loss by Barbara D. Rosof and When the Bough Breaks by Judith Bernstein. I think when all is said and done that we, the community of bereaved parents, have little or no choice: either we adapt healthily or our spirit begins to die, our strength, our "koach" wanes; we end up wasting our own lives (what an enormous sin!) what few real opportunities to do Good, perform mitzvos and acts of "gemilus hasadim" (loving kindness)... are lost to us! May each of us ... on the "zchus"-merit-of our beautiful children's abbreviated lives be able to live life fully, b'simcha! What better way to honor their memories! I remain ...

Sincerely yours,

Alan D. Busch

c said...

I grieve with you and know that you probably still do. My little Angel Paige is nearing her end. We have struggled for almost 3 years and would trade what's coming for a lifetime of agony if only it meant more time. My heart goes out to you. You can read about Paige ->

warmest regards,

Needsabetterjob said...

I am still amazed at your continued adherence to all the religious minutae. After what you have been through how are you able to love Hashem? I understand that you do, it is just that I know someone else who had a similar ordeal, that he lost his son around age 6-8. He had a very successful business and still does, but he divorced his wife w/in a year of the tragedy and then shortly after is living w/ a non Jewish woman. He will not have anything to do w/ religion, even to the point if he is needed for a minyan he will not agree, he will not be part of a Mizuman, etc...
That is, he abandoned his closeness to Hashem.
I am interested how you have taken an opposite approach to this man.
I am asking bec. while I have not gone through anything remotely like your tragedy, I am having many difficulties in life, and feel often that Hashem is not w/ me.