May 5, 2000
During the past week Timmi's mood continued to be somewhat unstable but the fluctuations were in a reasonably defined "band". Her physical symptoms also changed form day to day (and even more often). She increased the dose of her pain medication, and so her "background" pain situation improved somewhat, although it still hurts her when she moves in certain ways. She is also extremely tired some of the time, possibly due to the fact that she sleeps quite badly at night, as a result of the steroids she is taking. She has been reducing the dose of steroids, though, so we hope to eliminate them completely as soon as possible.
She has also been working a couple of hours a day a few days a week, at jobs she got through my request on one of the recent updates. She is sorting and filing all kinds of documents that collected over the years at one family's home, and she is typing data into a database at the ADL's office. She has also been trying to study for the two Bagruiot that she wants to take this year, but her sleepiness interferes much of the time. But in Israel, luckily, the opportunities to make up tests that one didn't take (or even improve grades, for that matter) are almost limitless.
We have also been thinking of several ways by which she can become more independent. One of her problems (and ours) is that she is so dependent on us to take her everywhere by car. So we have decided to make an exception to a family policy which discourages our kids from driving before the age of 21, and have her take driving lessons as soon as she feels up to it physically. She will also open a bank account, and receive her disability allowance independently of us, and will thus budget her own clothes, entertainment, etc. This plan made her feel more optimistic than she has in quite a while, as is extremely understandable. Imagine being over 17 and almost totally dependent on your parents! (Also imagine having such a dependent 17-year-old.)
Don and I have become quite exhausted over the past week. Because of Timmi's present situation, I cannot work outside the home more than a minimal amount, and so the entire burden of supporting the family has fallen on his shoulders. As a result, he stays up quite late at night working at his consulting business, and I do almost all the errands, household stuff and ferrying around of Timmi. This takes a physical and emotional toll on both of us. Good we have Shabbat!
Shabbat Shalom to all.
May 9, 2005
Right now we’re between Passover, the Jewish Festival of Freedom, and Yom HaAtzma’ut, Israel’s Independence Day. On Passover, the Children of Israel started their painful but immensely meaningful transition from their lives as slaves of a certain ethnic and religious group to their new identity as a distinct, independent people responsible for their own destiny. And Israel Independence Day marks the beginning of the Jewish people’s transformation from an ethnic and religious minority in the Diaspora to a nation with its own homeland.
I’m also about to embark on a journey that will bring with it a certain freedom; this summer I will live away from my family for the first time in 28 years – in a dormitory suite, almost like a single student. So it seems fitting to find now that my update of five years ago focused on Timmi’s need for a more independent life. But while for Timmi any independence she achieved was a pure blessing, I have more mixed feelings about some of the kinds of freedom I enjoy today.
Timmi was first diagnosed with cancer when she was twelve years old. Just when she should have started the process of separating from her mother and father, and of forming new and stronger bonds with her peers, she was suddenly thrown back into a kind of virtual babyhood, as she lost control of her life. She would lie in her hospital bed for hours, subject to the nurses’ and doctors’ day-to-day routines. Things – sometimes painful things – were done to her whether she wanted them done or not. There were long periods during which she couldn’t walk by herself, and some during which she couldn’t even feed herself, but had to be “fed” through a “Hickman,” a catheter inserted into an artery through her chest.
We tried our best to give Timmi as much control, or sense of control, as we possibly could. From the beginning, we discussed with her all the details of her diagnosis and treatment, sharing with her all the literature we were given to read about cancer in general and about leukemia in particular. Although it was we who decided on the course of her treatment, we were always careful to take her feelings and opinions into consideration. Later, she learned to perform (under our supervision) some of the technical tasks of her treatment. For example, after her first bone marrow transplant, when she was receiving medication intravenously at home, she learned to change the bags of fluids by herself; she also learned how to change the bandages on her Hickman. Anything she could possibly do for herself, she did.
But ultimately there was no getting around it – when she got sick, Timmi’s power to decide for herself was reduced to a small fraction of what it should have been for a healthy girl her age. She was acutely aware of the difference between herself and her peers which, of course, went far deeper than the degree of her independence. When she was in ninth grade, she wrote a poem expressing her frustration and longing.
I might have been now
A tranquil girl, with a smile on her face,
And not perpetually cross.
A serene and confident girl,
Who doesn’t fear every shadow.
I might have been now
A regular schoolgirl,
And a girl who returns home from school
With quick, light steps,
Without arriving panting and in pain.
I might have
Joined all the trips and camps
That I missed and will go on missing.
Slept at night, with pleasant dreams,
Made peace with myself – no one’s perfect.
I might have
Who come to my home and host me at theirs,
And all might have been self-evident,
And clear, that I truly deserve this.
I might have had something to do with my life,
Accepted love from my sisters
And finally stopped weeping
And have been fourteen and five months.
Timmi was delighted when a time finally came when she was able to participate in normal activities together with her peers. Just a month after writing her poem, she went to that year’s pre-Passover Scouts trip. As a junior counselor, she accompanied the eighth-graders on a four-night “Sea to Sea” hike from the Mediterranean to the Kinneret (the Sea of Galilee), at the end of which they pledged loyalty to the Scouts movement and its ideals. She was thrilled to discover that she could once again move and use her body like the athletic girl she was before she became ill. She even took on extra tasks, like carrying the jerry-can around and making sure that everyone drank enough. She came back from that trip positively glowing, feeling that perhaps she really was about to to rejoin the stream of normal life.
A year later, Timmi started to feel the the pain that (we know now) signaled the return of her cancer. After that, although there were short periods during which she enjoyed a semblance of independence – such as those few months five years ago, when she was taking driving lessons and working a few hours a week – she was to need us to take care of her for the rest of her life.
Parallel to Timmi’s loss of independence, Don and I lost much of our own liberty. All our plans were subject to Timmi’s treatment schedule. There were long periods when neither of us could get to work every day, let alone go out to have fun. All those hours spent by Timmi’s bedside at the hospital and with her at home when she couldn’t attend school meant that we had less time, or no time, to spend on many of our normal, routine activities – even to spend with the other children. At the time, I missed having control of my own schedule, and the freedom of occasionally deciding to do something fun on the spur of the moment, much the same as I had felt when I'd had many small children to care for. But when our freedom was returned to us, it came at a horrific cost.
I remember a conversation I had many years ago with Veronica, a close friend, just after her mother had died only a few months after her father passed away. For years, her parents had been living with her and her family, and she had been spending more and more of her non-working hours caring for them. In my naiveté I remarked that, now that she had no one she needed to take care of, she was free to do all the things she hadn’t been able to do for so long. She replied sadly, “That’s exactly the problem – I have no one to take care of any more.”
I’m also reminded of the Polish-French writer-director Krzysztof Kieslowski’s extraordiary movie “Three Colors: Blue.” It’s the first in a trilogy of films named after the French flag – Blue, White and Red – with each color corresponding to one of the ideals of Liberty, Equality, and Fraternity. In his rendition of Liberty, Kieslowski did not choose to deal with the grand themes of political or national freedom. Instead, the film tells of Anna, who suddenly finds herself “free” of all bonds when her husband and child are killed in a car accident. This tragic independence ultimately turns into a deeper freedom, when she finally allows herself to love again.
Since Timmi left us, I feel a profound bond with the real-life Veronica and the fictional Anna. The emptiness of my days, after all the hours that I'd spent caring for Timmi all but overwhelmed me in the first months and years of my bereavement. I literally felt like a ship whose anchor had been cut away, leaving it adrift in uncharted waters. Even today, when I’m again able to enjoy my leisure hours, there is no doubt whatsoever that I’d give them up in a second if I could only have Timmi back.
At the same time, like Anna, and like Veronica (who has since found comfort in caring for the grandchildren with whom she has been blessed in the past few years), I’ve begun to find my way back from the despair of the sudden liberty that was thrust upon me when I no longer had my daughter to take care of. And my true liberation, much like Anna’s, has been internal. I no longer see freedom as the ability to do whatever I want to do, as the spirit takes me at a particular moment. I’m now extraordinarily grateful for the demands on my time and energy that inevitably attend my involvement in relationships – with my sister, with my friends, and above all with Don and my children.
True freedom, for me, is the privilege of submitting myself to the bonds of love.