Radiation treatment resumed six days after Laura came home from the fly-by. She still had 14 more times to go. With all the turmoil of stopping radiation and recovering from surgery, Laura took permission to reduce her Decadron to mean that she could stop all together. Her gut couldn’t take the turmoil any more. A big mistake. For the last seven blasts of radiation, they increased the dosage substantially, causing Laura’s brain to swell even more. The radiologist presumed that Laura was taking Decadron as prescribed. I should have known better.
Laura returned each afternoon progressively more disabled with nausea and headache. The days of taking walks after getting back from the city were over. I started leaving work early to be with her. Friday was the worst day. Laura was in such bad shape that our friend Raju, who had driven Laura that day, would not leave her until I came home immediately. Laura was prostrate on the bed. She could not move from the bed to the bathroom without assistance. To top it all off, the furnace went out right after I got home.
Treatment ended the following Tuesday. On the evening of the next day, Laura collapsed as I was helping her get out of the bathtub. Because she was trembling, I thought she was having a seizure and told Anne Mei to call 9-1-1. We got Laura dressed and in bed just before the bedroom filled with EMTs, who told us that it had not really been a seizure. I stayed home from work the next two days, sitting by Laura’s bed.
Friday, the second day at home, was so bad that Laura did not remember the day at all, much less that the sheets and the rugs had to be washed twice. I started calling the number for the oncology nurses’ station in the morning. Things were getting worse, not better. About 2:00 p.m. I left another message. “I called a few hours ago about your patient Laura Rivkin. When you get a chance, would you please give me a call. She’s not doing well.” When the nurse finally called about an hour later and found out that Laura was not taking any Decadron, she said to give her some. After that, Laura slept profoundly through the night, and I knew she was starting to get better when she eagerly drank her coffee on Saturday morning.
These days of sitting with Laura were both outside of time and all about time.
O you who know
did you know that a day is longer than a year
a minute longer than a lifetime. Delbo (1995) 11
I stayed home from work and could not follow my daily work schedule. We were able, however, to maintain household time to some extent. In the morning Anne Mei still had to be awakened to catch the school bus. When she returned in the afternoon, there was still the cycle of homework, violin practice, and supper. Even though Laura had spent most of the day after her “seizure” in bed, she tried to eat supper with us. Anne Mei and I kept looking at each other in distress as Laura sat there in a daze, making feeble attempts to feed herself and maintain the ritual of a family supper. I finally had to take her back to bed.
This was also a juncture in treatment time, a scheduled stop while we waited until the swelling subsided enough for an MRI to show if the radiation had affected the tumor at all. Since Laura was getting her MRIs at a center near us rather than at the medical center in the city, I had already had to learn how to time calls to the right person and at the right direct line at the oncologist’s office to get a pre-authorization number from the insurance company for me to give to the MRI facility.
These calls involved the “bureaucratic time” of the medical systems with which we were dealing. During the days after Laura’s second hospitalization because of pseudomonas in the site of her craniotomy (the fly-by), I had begun to learn when my calls to the nurses’ line in the oncologist’s office were likely to be answered by a human voice, how long it might take to get a return call in response to a voicemail message, and how many times I needed to leave a voicemail before getting a return call. I also learned that after 4:00 p.m. I could not leave messages on the nurses’ line and could only go through the general switchboard, which proved to be useless. That’s why I started calling earlier on Friday morning. As the afternoon “deadline” for being able to reach a human approached and as Laura’s condition deteriorated more and more, I was anxiously juggling the timing of my calls with the number of calls that might be counter-productive.
Ironically, this whole period began with an unscheduled appointment, the “fly-by,” which represented the surgeon’s effort to game the bureaucratic scheduling system. It also seemed that he was trying to work around the slower rhythm of the hospital on a weekend by not telling Laura that she might have an infection on Friday. He had the power to play with the clock. Laura and I didn’t.
Now, during the two days after her “seizure” Laura and I seemed to be outside time. We were immobilized together in our bedroom. Laura was doing nothing except hurting, and hurting cannot really be measured by a clock, at least by the person doing the hurting. When she wasn’t convulsing, she was half conscious or sleeping in bed. I had moved a chair from the living room into the bedroom, as well as a lamp to read while sitting near her. Since I had often fallen asleep in that chair while “reading and scribbling,” it was easy to sleep there rather than disturb Laura by getting into our bed at night. She lay flat on her back with her eyes closed. When she could attend to something other than her body and her head, she did not dare move. Moving could set off more spasms. When Anne Mei wasn’t home, I sat in the chair where I could watch Laura. We both stayed—she as participant, me as observer— in each moment that her body and her head remained throbbing. We did not, could not, measure those moments. And that’s what we do when we do what we call “time”—measure and count other activities. Laura’s body would bring us back into time with a spasm, a marker for an illness time measured by the gaps between these eruptions, followed by the timing of the cycles of the washing machine and the dryer.
All these times—body, tumor, treatment, calendar, household, work, bureaucratic—are more or less sequential, measureable, and orderly (even if that order was sometimes defined by the disorder created by Laura’s body). Pain-time, I was learning, is not internally sequential or countable. Pain-time is modal. To hurt doesn’t have tenses (past, present, future) as much as it has moods. Actually, “my body hurts” has only one mood—now! “I am suffering” has three moods—now! whew! and when?
Soelle described the “duration” of pain in terms of attack/scream and wait. Now, whew! and when? emphasize the emotions involved as well as the moments of time. Attack, wait, and scream emphasize the changes experienced and initiated. Attack/now and wait/when? correspond easily. Whew! and scream offer different views of release from pain. That different view also changes what is going on with waiting and when? We’re talking about two ways pain and suffering proceed. Both begin with the experience of physical pain (now, attack). When the physical pain subsides for whatever reason, we feel whew! but then will ask when the physical pain will return. When physical pain does not subside soon enough, we scream to interrupt what’s going on.