Routine

Offsetting the larger uncertainties that stir the nerves on any given day are those situations that occur with a kind of certainty that would put dollar signs in the eyes of gambling pro's and neophytes alike. Without fail, starting as early as 2 in the morning, we'll faintly hear Craig stir in his bed and say, "I need some help sitting on the side of the bed." So begins the nightly ritual as certain to occur as Britney Spears is to regret her twenties.

With squinted eyes and tasseled hair, two of his 4 slumber party buddies dutifully respond to help first pivot his legs and torso into an upright position, then begin his "UWPRS" (pronounced "uppers") routine - urinal, water, paper towel, rag, sit. As sure as the sun rises, his requests begin with using the urinal; then a drink of water; followed by using a paper towel to blow his nose; a rag to wipe his eyes and forehead: and time to simply sit and dangle his legs. Averaging 3-4 times a night, his needs have become so consistent it's a wonder whether some level of OCD hasn't crept in -- a similar OCD to my need to make an acronym. ;) His routine is even on a timer, no less. When the sun creeps in around 6am, he asks one of us to close his drapes. By default, Jill is the drape closer, since she is closest to the window from her position in the sardine can that is his thrice occupied queen size bed (guess who gets the middle! To my horror, I woke up one morning with my face literally sandwiched in Diane's armpit. These are the sacrifices, I suppose. ;) ). Jill will pull the blinds closed until Craig says, "That's fine there", inevitably leaving a foot or two to let in the sun. Each morning, I watch the sun creep across Diane's face to my right, then blind me, then fall on Jill to my left. But, to hear his tender voice make the request and politely mark the same spot, using the same phrase, makes the sunburn worth it.

Typically, we will have at least 2 "UWPRS" moments before "drape time", and for each occasion we sit, still half-asleep, ready to hand him the appropriate item for his 5-step process. As if on cue, one of us will ask how he's sleeping and feeling. He'll respond with a brief, but honest response. Lately, he'll even ask questions of his own: "When will the work end?" Unsure whether he wanted a literal response or a metaphorical answer, I did what all psych folks do, reform the question and volley to him. He clarified by adding, "...I mean with all these pipelines and things..." Tired and confused, I whispered, "mining?" thinking to myself "how the hell am I going to BS this one?" Then, ever perceptive, I realized he was referring to the oxygen, antiemetic, and morphine pipelines criss-crossing and channeling towards his body. Another morning, he mumbled something to the effect of it "being overwhelming...things are really happening to me, and quickly" but augmented the statement with "leader of the freestyle kick".

Most mornings, however, we keep to our acronym with few verbal exchanges since, quite frankly, it's the wee hours of the morning and we're too tired to keep up conversation -- Craig included. Despite already knowing the answer, there comes a time when it seems reasonable to ask, "Are you ready to swing your legs back?" With another sip of his water, he slowly replies, "Not quite yet." For a man who spends 95% of his time in some variation of lying on his back, he relishes the opportunity to let his legs and feet dangle from the side of the bed as if it was the ledge of a pool. To see the happiness and freedom he seems to feel by sitting upright is reason enough to shake the tired from my state of being, and linger with him a while longer. But, as with all good things, his bedside dangle comes to an end by order of swelling, slowed circulation and increased mottling in his legs. Like it or not, we have to pivot him back to bed and to a sleepy slumber until the next time he shifts and says, "I need some help sitting on the side of the bed". And, so the routine begins again.... ~E