February 2, 2008, 8:40 p.m.

Rain was lashing the windows. Joni Mitchell songs were playing on the computer.

And my little brother took his last breath.

Nexus

Approaching.

Foggy today

Weathering.

"Dedicated here to the unfinished work"

Yesterday, BH wanted my help with a video project, so we watched old footage he'd stored on one of his video cameras. In one video, his then-perhaps-five-year-old son reads a book out loud, staring occasionally into the camera lens to deliver key lines with grave and dramatic emphasis. In another, BH's then-maybe-three-year-old daughter props a storybook open on the piano and studiously turns the pages as she presses the piano keys, as if the book contains musical notes for her to play. In a third video, BH wears a crumpled aluminum-foil mask and delivers an incomprehensible alienesque monologue ala Renetto on YouTube.

In a fourth video, BH moves jerkily into the frame from offcamera, settles himself, and recites The Gettsyburg Address. His words are slurred, labored, raspy. At one point he is interrupted by his wife's voice as she enters the room to fetch something; when she has left (without, it seems, knowing that she was recorded), he repositions himself, nods, laughs nervously, and gives the camera a goofy grin that seems to say "wow, uh, yep." Then he struggles his way through to the end of the Address.

But it's not the struggle I focused on when I watched that video. I saw BH moving his body by himself. I heard him speaking. I saw life sparkling in his eyes. In the video, he is engaged and engaging.

The contrast with today is sharp, extreme. As the video played yesterday on BH's computer, his now-nearing-five-year-old daughter stood by the side of his wheelchair, looking from the screen to her dad, her dad to the screen.

Later that day, watering the plants in my garden, I cried.

The wrong direction

My fifth day in a row at BH's house, the fourth full day since his wife and kids left for much-needed R&R, I get a call from my husband.

My husband is having trouble breathing. He's throwing up. His inhaler isn't quelling the asthma attack. "I need you."

Check with BH, check with the attendant on duty, call the attendant who is scheduled to arrive: everyone on track, everything under control, can I leave to help my man? Husband hangs on the line.

Out the door. Driving home. Cell phone, every few minutes: "Where are you?"

Hold on. Hold.

Home. Husband into the car. Head for the emergency room.

Fire on the hillside, traffic clotted on the bridge, looky-loos and weekend-escapees. Slow, slow.

Emergency room. Hand husband over to doctors. Wait. Wait some more.

Two hours later, he's stable, but they can't predict whether he'll need to stay only a few more hours or remain overnight.

My cell phone has lost its charge. If BH's attendants try to call me, I won't know.

Back to BH's house I go.

Mismatch

A doctor calls to prescribe meds. The doctor wants to know if BH is taking X (a general antihistamine) or Y (a drying agent). I read the master list of medicines that he’s taking and see neither X nor Y on the list, and I tell the doctor what is listed. She says that none of the meds on the master list are general antihistamines or drying agents, and that I should go buy X and fill her prescription for Y. I go buy X and fill the prescription for Y. The attendants and I give X and Y to BH.

The next day, I am looking at the list of daily instructions to the attendants in order to add X and Y to the list, when I see that a general antihistamine and a drying agent are already being given to BH—even though that general antihistamine and that drying agent aren’t listed on the master list of meds. That means that, in giving him X and Y the day before, we may have overmedicated him—giving him two general antihistamines and two drying agents. Overmedication can lead to rebound effects. Not good.

I compare the master list to the daily instructions and find that four medicines he takes every day aren’t on the master list.

I place three calls to the doctor. She never calls back.

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.