Monday, January 31, 2005

Pain and Poetry

January 20, 2000
This past week has been seriously difficult. Last Shabbat Timmi woke up in the middle of the night, in severe pain. We gave her painkillers that had worked in the past but were unable to control the pain through Motzei Shabbat, when we called Dr. Cherney, the pain specialist who helped us so much last summer and fall when Timmi was both in serious pain and very depressed. Since then we have been trying to eliminate the pain with progressively higher doses of narcotic painkillers, under Dr. Cherney's advice and supervision, of course. The pain is now almost under control, but since Sunday Timmi has been experiencing long periods of extreme drowsiness, hallucinations and confusion.

We were (and still are) very worried that the price of controlling the pain will be damage to Timmi's ability to function. There is a difference of opinion concerning the cause of the pain - Dr. Cherney believes that it is a side effect of a drug that Timmi received as part of the preparation for her transplant, in which case we may expect the pain to be relatively short-term. Professor Cividalli believes it to be a sign of GVH, in which case it could last quite a long time. Both doctors agree that the source of the pain is damage to the nerves of her feet and hands as a result of the transplant. Either way, we can't go on having Timmi unable to open her eyes for the better part of every day, so we feel as if we are between a rock and a hard place.

Today Timmi was hospitalized; it turned out that already as of Tuesday morning she was seriously dehydrated. The dehydration probably started last week, when she was nauseated and generally found it difficult to eat and drink. Her sleepiness then aggravated the problem, as (wonder of wonders) a sleeping person does not drink. Dehydration can be quite dangerous post-transplant, as the anti-rejection drug Cyclosporin that she is taking can damage the kidneys in the absence of sufficient hydration, and so she was supposed to be drinking more than usual. But it also turns out that dehydration can cause hallucinations and confusion! So it may turn out, once she has enough fluids in her, that it will be possible to find the combination and doses of painkillers that will enable us to control the pain without impairing her alertness. We certainly fervently hope so.

We hope that Timmi will be released from the hospital before Shabbat, but there is no guarantee. If she stays, Daniel will as usual stay with her in the hospital and I'll hold the fort here with the other kids.

Shabbat Shalom to all.

January 31, 2005
There is no life without pain. But there is pain, and there is pain. I truly do not have the words to express what it was like to see my daughter in prolonged agony. The waiting I wrote about in my last post turned into torture when what we were waiting for was relief from Timmi's intense suffering. All I can really say, right at this moment, is that when I signed up to be a mother, no one told me about that part of the job.

But Timmi did have words; she created poetry. After Timmi died, we found a neatly hand-written collection entitled “Mostly Poems.” We also found in her desk previous drafts of some of the poems, and so it was clear to us that in her last months she had decided on a final version, and then edited the collection, arranging the poems according to the date she’d written them. I think she did this, either deliberately or subconsciously, in order to leave them for us, much as she did the photo album that she arranged, and on the cover of which she wrote:

(First Album)

It’s excruciating for me to read the poems that speak of the physical, emotional and spiritual pain that Timmi suffered. Nonetheless, I read them from time to time, as do Don and my other children. Just as pain became part of Timmi's life, the poems are part of who she was. There are times I can’t bear to look back at what she went through in her young life – six months of increasing pain before she was diagnosed; intense pain caused by chemotherapy and by bone marrow transplants; a return to intense pain with each relapse of the cancer; and throughout, bouts of depression and anxiety. It would be wonderful to forget Timmi’s suffering, and remember only the good times we had together. But I don’t want to forget any piece of Timmi. And so I read all of her poems and, together with my own sadness and pain in entering into the darker parts of her world, am amazed by her ability to put into words fears and experiences that are truly unspeakable.

I’ve loosely translated some of Timmi’s poems into English. I’ve tried to preserve the poems’ meter, but haven’t attempted to reproduce their rhyme schemes. (Another poem appears in “Yahrzeit,” December 2004.)

April 20, 1999
A black cloud of razor-sharp claws.
They scratch deeply into my flesh
If I ask who sent them, and why to me,
They continue to pierce in silence.

A black cloud of claws that wound.
They’ve pulled me toward pain’s abyss
I cannot scream out how evil they are –
After all, does a claw have a heart?

A black cloud of claws that rip.
A claw has reached my core
And there it tears off strips of my soul
And, giggling, discards them in slime.

A black cloud of murderous claws.
They’ve pulled me toward the great Pit.
But I’ve stood up to them and continue to stand -
I’ve yet to give in to despair.

This was the next update that I sent out to our community, two days after the one I've reproduced above:

January 22, 2000
Because my last update contained some very upsetting developments, I am writing this to let all of you know that things improved greatly over Shabbat. The most important news is that the hydration she has received until now has apparently cured the hallucination and confusion problem, so it seems that it wasn't caused by her pain medicines after all – just coincidentally she was increasing her dose of the medicines as she was getting progressively dehydrated. She is now either asleep or awake - no more strange in-between state. This is, of course, a great relief, although there was some comic relief in listening to her when she was hallucinating (at one point she asked me if I had eaten the four frogs I was supposed to eat). Also, her pain is now pretty much under control.

The less good news is that she will have to stay in the hospital for another couple of days at least. While the hydration has caused her biochemistry to improve, she still does not have normal function in her kidneys, which were seriously damaged (probably not permanently) by the dehydration and by the high level of Cyclosporin in her blood. Therefore, she will need to remain in the hospital for at least 24 hours after her biochemistry returns to normal.

Thank you all for your concern and hopefully by next Shabbat she will be out of the hospital and feeling much better.

No, there is no life without pain. What we can hope for is to be able to transform that unavoidable suffering into our own private poetry. And if, unlike Timmi, we lack the words to pour ourselves onto the written page, we can try to make our lives into poems of lovingkindness and empathy, by doing our best to ease even a small bit of the pain that afflicts so much of this world.

1 comment:

torontopearl said...


Your daughter's poetry is certainly illuminating, giving us insight (with your translation)to her thoughts, to her her pain and despair.

And you are equally a poet as you write your heartfelt blog and shape your words and images so that you can convey to your readers what life was like for your family, and what life continues to be like for your family.

You certainly do not "lack the words to pour [yourself] onto the written page." It is in fact sad that there are too many words....