May 20, 2000
It's been a while since I last wrote, because for a while there was nothing new to write, really. In the last week or so, though, there has been good news and bad news.
The bad news is that it has become fairly clear that the pains that Timmi has been experiencing in her knees and shoulders are from tumors and not from GVH as we had hoped. The pains are getting worse, they feel like tumor pains (she knows what those feel like) and she has no other GVH symptoms. She is therefore reducing the doses of steroids and other anti-GVH medicine more quickly, which is good on the one hand because the steroids have very unpleasant side effects (she is all swollen with retained fluids, has trouble sleeping, is irritable etc) but hard in the short term on the other hand because she now feels quite weak from the sudden reduction in the dose. We hope, very hard, that the GVH will return but in the right amount this time (enough to fight the cancer but not enough to hospitalize her like last time).
The good news is that her steps to independence have greatly cheered her up. She really enjoys her driving lessons, and is fervently looking forward to being able to get around on her own. She is still studying for the matriculation exams she is taking, and has completed one with the second to be completed in the next few days.
I know many of you won't see this until Sunday, but Shabbat Shalom anyway.
May 22, 2005
I’m leaving Tuesday evening very late for New York, where I’ll begin my much-anticipated course of study for an MSW on June 1. I’m going a week before my classes are due to start because I want to be sure I’ll be sleeping normally by the time I start classes. I’m certainly not looking forward to jet lag. But after years of inability to sleep normally, I’m grateful to find myself confident that I will eventually get back to a reasonable sleep pattern – and even more so that I’ve established a reasonable sleep pattern to get back to.
Sleep is a place to which we should be able to escape when our daytime troubles feel overwhelming. It was therefore a cruel stroke of fate that Timmi’s illness and its treatment often made her unable to sleep. Whenever she was taking a course of steroids, for example, her brain would go into overdrive, and she’d be up for much of the night. During the harder times, she spent much of the day just waiting for night to come, only to find sleep impossible. Sometimes she would put calming music on and give herself a treatment of Reiki. The Reiki did help her relax some of the time, but ultimately it was no substitute for deep sleep.
I was and remain very much able to relate to Timmi’s sleep problems. I’ve always envied people who escape to sleep when life becomes too much for them. Since I was a child, one of the first signs that I’m in emotional trouble has been an inability to sleep. I remember telling my teacher, in third or fourth grade, that I was having a hard time getting to sleep at night; she suggested I take a bath rather than a shower in the evening. I tried, but it didn’t work, because my insomnia wasn't caused by my body’s inability to relax. I couldn't sleep due to my emotional reaction to the tensions between my parents, who separated two or three years later, and to my troubles at school, where my tendency to daydream and my general social cluelessness made me the target of physical and verbal abuse by my schoolmates.
I also remember how during the year before my father died, I slept through an entire unit of my geometry class – taught by Mr. Nadel, on whom I had a wild crush, and whose classes I wouldn't have purposely missed for anything – because sleep was eluding me at night.
After I had children, my problem was “solved” for a while. I'd fall into bed totally exhausted from a full day of work and child care, and fall asleep so quickly that I couldn’t remember my head hitting the pillow. Still, like most mothers, I'd wake up at a baby’s first cry or a child’s call of distress at night. (I’d then usually wake Don, who would uncomplainingly get up to bring the baby to nurse or see what the child needed; if I got out of bed I’d be awake for the rest of the night, whereas Don could drop back to sleep as soon as his task was finished.) In those days, I thought it was hard to have to wake up so often to tend to my children. Only now do I understand what a privilege it is to be able to respond to a child’s cry in the night and to soothe her distress with love and attention.
The worst awakening of my life was on January 5, 2001. I was taking a Friday afternoon nap after finishing preparations for Shabbat. For a full month, Timmi had been lying, very deeply sedated, in the hospital’s intensive care unit. The nurse on duty had insisted that we rest at home, and told us that the minute there was any change whatsoever, he would telephone us so we could rush to Timmi’s bedside. At about 3:00, I was awakened by the ring of the telephone. I heard Don say something like, “Ah,” or “Oh,” and I knew. I sat up, crying already, and Don came into the bedroom to tell me that Timmi had left this world.
For long months and years after that wake-up call, I continued to awaken at around 3:00 – but in the morning, not in the afternoon. Often I woke even earlier in the night. Neither sleeping pills nor natural sleeping remedies had any effect. My earlier experience as a parent was turned on its head – then, I would snatch sleep when I could, during my rare free hours of the day and when no children needed me at night. Now, I had far too many empty hours, but was unable to use them to sleep. I would lie awake for hours, praying for sleep to come and deliver me from my constant awareness that my daughter was gone. Even more, I wanted desperately to dream of Timmi – if only to see her face again, even at the inevitable price of waking up and once more facing the reality of her loss. But most of the time sleep stayed away. When it did visit, it denied me both the dreams I’d hoped for and the rest I so badly needed.
By waking up in the middle of the night, was I reenacting that horrible Friday afternoon? Was I trying to feel close to Timmi by experiencing the restlessness that had plagued her for such long periods? Or was I, as the experts say, simply exhibiting one symptom of the depression into which my daughter’s death had plunged me? Perhaps all of these are true. But I think there is another reason as well. I believe that my wakefulness at night was a kind of vigilance – a way of trying to avoid falling asleep “on my watch,” as I had that terrible Friday afternoon.
As I've moved forward in my journey toward healing, my ability to sleep has slowly returned. At first, I was able to sleep for four hours straight, then five. Now, although I still wake before my alarm rings, I’m usually able to sleep for six hours in a row, and wake up most of the time actually feeling rested. On rare occasions (most often on Shabbat), I can even drop back to sleep again and get as much rest as most people do when they have the time to stay in bed.
I believe the main reason I’ve regained, to some extent, my ability to sleep is that Timmi is now a presence in my day-to-day life. I see her, happily, in my other children; I see her, sadly, in those of her friends with whom I still have a relationship; I see her in the poems, the deeds, and the love she left behind.
Today, I thank God that I can relax my vigil, and sleep without the constant terror that someone precious to me will disappear while I’m dreaming.