Looking down

He’s very weak. He’s stress-coughing—sometimes for hours: nonproductive dry coughs, even though his lungs are clear. He prefers not to take meds that reduce stress.

He hasn’t energy to converse. He spells out essential orders—in phrases, mostly, rather than complete sentences. He answers yes-or-no questions by beeping a button on his wheelchair like Captain Christopher Pike.

His head is almost always bent forward to rest on his chest so that saliva can drain out onto the kleenex in his mouth, and his eyes look down toward his lap. He’ll raise his head sometimes to look at his computer or have spray put in his nose, but mostly he’s looking down, listening to NPR or to music . . . or coughing.

That means he rarely makes eye contact with anyone. People can get down on their knees and peer up at him, but no matter where they kneel—to the side, or in front of his chair—his eyes still point toward his lap; it’s not comfortable for him to angle his eyes sideways or up, so kneeling doesn’t usually result in eye contact, and certainly not sustained contact. His wife will bend near his face to kiss him and say loving things to him, but other people doing that causes him stress.

Isolation isn’t just a matter of staying in the same room twenty-four hours a day. And it isn’t just a matter of not conversing. Eye contact is a real loss.

At least from my point of view.

21 miles

I biked twenty-one miles yesterday. Stopped twice going up Sycamore hill.

Bike shorts . . .

New bike

I bought a bike! It's a hybrid, a Giant FCR 1. Silver and black. Lightweight. MINE.

Ten days

In the past ten days, I've spent nine at my brother's house--sometimes around-the-clock for days at a stretch, and sometimes for four hours or so--helping care for him while his wife and kids are out of town. My sister helped too, staying round-the-clock on the days I couldn't.

In a normal week, when his wife is home and there's no crisis or doctor's appointments or other special need for our help, my sister and I each do just one shift alone with him (me on Monday, and my sister on Tuesday). The rest of the time, paid attendants care for him twenty-four hours a day. During the period his wife was away, my sister and I each did shifts alone, and we helped the attendants when necessary during their shifts.

Sometimes he was doing okay, so the attendants handled nearly everything without our help, except for showering him or getting him onto the toilet, and sometimes getting him into or out of bed. Other times he was in distress, so we helped the attendants for hours on end: suctioning him, changing the kleenex in his mouth every minute or so, repositioning his limbs, translating his communications on the word sheet, plugging, unplugging, cleaning, preparing . . .

One attendant didn't show up for her shift (car trouble), so I did that extra shift alone. Several attendants showed up late, so my sister or I filled those gaps.

In between we ran to the store to buy boxes and boxes of kleenex, vinegar, waterproof medical tape, wet wipes, and various meds, consulted with two visiting nurses, and wrangled with the pharmacist and the doctor about prescriptions. We wrestled with dilemmas, weighing positive therapies against their negative effects: the nasal steroid that prevents his racking cough also compromises his immune system and encourages the dangerous thrush that coats his throat and mouth; the papaya juice that thins the thick, choking saliva also encourages the thrush.

Twice we got away to ride bikes. And I spent hours doing jigsaw puzzles on the dining room table, sorting pieces in silence like Susan in Citizen Kane.

The only time my brother drove his wheelchair out of the master bedroom/bathroom area was to greet his wife and kids when they returned home.

Yesterday, I crawled off to my house to be with my husband and cats. Today I'm going back to my brother's house to do my regular Monday shift.

That will make ten days out of the past eleven.

Whip

People who feel threatened lash out. People who are vulnerable lash out. People whose lives are at risk lash out.

No value judgment here. Just truth. They're trying to protect themselves.

So duck. Back off. Disengage.

Another 16

Another sixteen miles on the bike yesterday. This time, my sister and I rode around the marina and along the bay. Oxygenated air, salt spray, dogs bumbling in the surf, ground squirrels zipping among the rocks, and seagulls calling overhead--as the sun reflects off the pavement, and the stiff-necked sea lavender bends in the wind.

Everything old is new again.

Photo future

Are all photos inherently of the past? Or is it possible to take a photo that doesn't look backward, at a moment that is gone once the shutter is snapped?