“Each time is true, but the truths are not the same.”I.
― Alan Lightman,
A few days ago, Rob told me he had to de/institutionalize himself. He explained that when he came home he had to remember that food need not arrive at 7:30 a.m., noon, and 6 p.m. and it need not be delivered by someone in hospital garb or arrive on a tray.
You can eat when you're hungry.
Time need not be measured by the arrival of morning and evening meds.
|Rob resting at home.|
I think of the absolute distortion of one's reality that longtime hospitalization causes. Our friend Michael, who is staying with us was helping me to reposition Rob in his bed this morning. The sunlight pouring through the window was in Rob's eyes and he began to gesture. Michael went to lower the window blind thinking the sun was bothering Rob. Rob stopped him saying how lovely the sunlight felt on his face.
It's the simple things--sunlight warming your face...the familiar landscape out the window--that hospitals fail to provide. There is nothing idiosyncratic in a hospital. Uniformity rules.
I try to recall the light in the many hospital rooms where Rob stayed these last 50 days and recall the harsh artificial lights that were more typical. More expected regardless if he was in a room in ICU, the oncology floor, or a step-down unit. Windows were absent in the ICU, small and oddly placed in the step-down unit, and a bit larger on the oncology floor. Nonetheless, the single window was far enough away from the bed that any warmth and light was greatly diffused, if felt at all.
Home helps us to recall what we like.
Home reinforces that we have interests, positions, purposes, preferences.
Home asserts our agency in pronounced and subtle ways.