|At the Point (M.A. Reilly, England, 2012)|
I. A Few Days Ago...
From across the drawn curtain comes Marlene's disembodied voice, "More water, Daddy? More water?" There's such tenderness in the question of a daughter to her ailing father. I sit next to Rob's bed, a few feet from the bed where Marlene's dad rests and notice a discarded cap and gauze pad, resting on top of Rob's chest, caught in a fold in the sheet. Bits of medicinal detritus, I think, left behind by a too-busy nurse who gave him an injection earlier.
There's a certain carelessness to institutions. I've seen this at any number of schools I've visited, especially when school personnel engage with parents, and now I know it to be true of hospitals too after months of being the patient's wife. I arrived this morning while rounds were being conducted just in time to learn that the pneumonia Rob now has is not responding to the antibiotics. I had not know that. I learned this alongside the residents and the others in the room. For Rob, with stage 4 lung cancer, pneumonia is no small matter. The attending explained to the residents that a lung biopsy which in cases like this is often done, would not be done given Rob's cancer. Rather, some type of steroid may be given after tomorrow. And then what? I think watching my husband's eyes close.
Sometimes it feels as if patients existed for little more than the convenience of practice by the attending and residents. Marlene will later say to me, "Sometimes I just want to yell at the doctors, 'Notice me. Here I am. I'm not invisible.'"
But aren't we?
Since the morning of December 30, Rob has been mostly in the hospital with just 9 days at a rehabilitation center until the third staph infection (infected picc line) landed him back in the hospital. He has not been home and each day edges him further away from the kind of necessary care one finds mostly at home. For the last two weeks I've watched him slip further away from the man I know, rally a bit, only to lose more of himself. At first I thought this was due to the narcotics he has been receiving, but now I don't think such simple causality is in play.
Healing is a complex matter of mind, body, and spirit.
Later, Rob will tell me, "I'm losing myself." I tell him how some days I feel like I've misplaced myself too. I tell him he's the best man I know and that I think to go through cancer diagnosis and the myriad of serious problems that have accompanied the diagnosis and to not think we are all fundamentally and profoundly changed is to rest in deep denial.
Sometimes words help. Sometimes they are little more than vibrations across our vocal chords.
Today, my brave husband is wearing despair like a too big cloak that he needs help to get out from under and a hospital may well be the last place to find such direction regardless of intentions.
We need to go home.