Telling

December 16, 2000
Timmi's condition has not really changed for the past week. She is still under general anesthesia, and still attached to a respirator on breathing support. My understanding is that her X-rays, as well as an ultrasound, have showed no further improvement after the improvement of the first few days, but no deterioration either. She is still attached to a tube that drains the fluids that keep building up in her lungs (or would, were it not for the tube).

Several times the doctors have tried to wake Timmi in order to get her off the oxygen tube. In order to take the tube out ("extubate" her), it is important that she be fully awake and lucid, so that she can cooperate when told to breathe a certain way, cough etc. However, when she is disconnected from the anesthesia and starts to wake up (this can take several hours, by the way), she starts to hyperventilate, either from the panic at awakening to find herself full of tubes, some of which feel like they are choking her, or for some other reason I don't understand. When she hyperventilates, her oxygen level drops sharply, and because she doesn't respond when told (including by me) to try and take slow, deep breaths, she needs to be re-anesthetized in order to stabilize her breathing. So there it is - Catch 22. It would be good if there were a way to calm her without putting her to sleep, but even without narcotics or anesthesia, Timmi has recently been very sleepy, to the point where it has sometimes been impossible to wake her at least for several hours. So any tranquilizer or similar drug she gets puts her to sleep.

I have been there a few hours every day this week, talking to her, singing to her, putting earphones on her head with music, and talking to the medical staff in order to try and get a handle on what's happening. This whole business is, of course, extremely exhausting, although we do have the comfort of knowing that she is not suffering, at least for the moment. On the other hand, we are very worried about what things will be like when she does wake up - it may take a while to extubate even after she is awake, and Timmi's ability to suffer that kind of thing is by now extremely limited. Not to speak of the general condition to which she will "return", and the question, given her extremely damaged immune system, whether and when this will simply happen again.

As for what caused this to happen, all of the tests have so far still come back negative, so the working assumption is still that she has pneumonia from some kind of weird virus. It is now known, from tests, that the respiratory failure was not caused by the leukemia. Cold comfort; most likely the GVH, which apparently is keeping the cancer at bay, also damaged her immune system, leaving her vulnerable to this kind of infection.

Don was home this Shabbat (the plan was for him to sleep at the hospital only if she is truly awake by Shabbat). We requested that the staff call us if they manage to wake her during Shabbat, so that Don would be able to go there then, but they didn't call.

Shavua Tov to all.

Love,
Sara

December 22, 2005
I’ve always been relatively open; some would say too open. The updates I sent to my community and this blog itself are, I suppose, evidence of this. This is especially so in my relationships with people I care about. If some people are compulsive liars, I guess you could call me a compulsive truth-teller. Doing otherwise makes me feel somehow fake, as if I’m engaging the other person in a relationship under false pretenses. I know this isn’t rational, but it’s me.

When Timmi became ill, many of my beliefs and life-choices were challenged, not least among these my need to be open with those I love.

One day, I was having lunch with Timmi in the garden of a café in our neighborhood. It was the summer before Timmi’s relapse was diagnosed, and she was enjoying the last weeks of her official remission. Suddenly, she asked me, “If you knew I were going to die, would you tell me?”

I immediately went into mother’s alert mode; this was going to be a very crucial conversation. “What would you want me to do?” I asked her. “No, I wouldn’t want you to tell me,” she replied. “It would be too scary.”

Now, if I were going to die anytime soon, I would certainly want to know. I’d want to finish what I could, do my best to secure my children’s future, heal any of my relationships that need mending, and take my leave of those I love in a way that will prepare them, as far as possible, to deal with my death. But I’ve been permitted to live the most important part of my life – I’ve lived in partnership with the man I love, raised children, and had the opportunity to contribute at least part of my share to the world around me. Timmi, on the other hand, had not yet had the chance to do any of these things, and so it was natural that the thought of knowing that her turn would never come was overwhelming.

I later learned just how frightening Timmi found the idea of dying, when we found “Principally Poems,” the collection of her poems (in Hebrew) that she’d edited during the last year of her life and organized according to date. Shortly before her second transplant, she wrote the next-to-last poem in this collection:

You’ve imprisoned me in a cold dark room
And I can neither stand nor sit
And my lying is uneasy
Hard and restless
And I cry –
Let me out
Or let me stand,
Or rest at least, or take away the cold
And if you can’t,
Please,
Open up a little crack
So I’ll know –
The world still contains a bit of light.

That day in the Garden Café, I spoke with Timmi about how it would be to hear that she had only a short time left in this world, and how it would be not to be told. I promised to do whatever she decided, although I couldn't promise that she wouldn't be able to know from my face that there was something terribly wrong. As we spoke, Timmi realized very quickly that my promising not to bring her the bad news would be as problematic as my promising to tell her. If I promised to keep from her my own knowledge that she was going to die, she would never be able to feel secure – perhaps the doctors had told Don and me that there was no more hope, and we were keeping it from her? But again, the thought of us coming to her with such news was so very scary.

As we went back and forth on the subject, I was suddenly able to see it in a new light. I pointed out that if I were to “know” that Timmi was going to die, I would be aware of this only because it had become clear that all her medical options had been exhausted, and that she still had cancer. But from the very beginning we had always involved Timmi and kept her informed of all the details of her medical care, and so in such a case she would also be aware that there was nothing left to try – and the question whether I should tell her would be irrelevant. Timmi accepted this, understanding my point, and didn’t need to go any further into the issue.

I never did have to decide whether or not to bring Timmi the news she dreaded more than any other. This was not because she knew it anyway, as we had discussed over lunch in the garden, but because when she was sedated just before being rushed to intensive care, no one knew that she would never awaken from her sleep.

During the last months of Timmi’s life, I sometimes imagined how she might leave us. In my mind, I saw us all at home. I saw myself lying in bed together with Timmi as she drew her last breath in my arms, surrounded by her family’s love. I wanted so much to give her that last blessing. In the end, the scene was quite the opposite; Timmi spent her last days and minutes in a deep coma, attached to a million tubes in a hospital room in which her parents were not allowed to sleep with her. This was the scene I'd always feared the most. But as it turned out, it was a blessing after all.

Timmi never had to know that she was going to die – whether from our bringing her the news, from the faces of the people who loved her, or from her own understanding that there was nothing left to try that might keep her alive at least a bit longer. She never needed to face the “cold dark room” that had haunted her poem. Until the very end of her conscious life she was able, like any other girl her age, to laugh together with the people around her, to think about boys, and to dream about the life she wanted for herself when she grew up.

Timmi died blessed by the belief that she would live.