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.

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?

16 miles

Yesterday my sister and her husband introduced me to their favorite exercise, bike riding. We rode sixteen miles around a reservoir near their house. Over gently rolling hills, beneath oak trees, and past vineyards, I huffed and puffed--and squealed when we zoomed down a slope. All in all, I enjoyed it.

Sore but happy

I've started exercising regularly again. For the past seven months, I've done nothing for my body. Last week, I returned to the gym.

Endorphins! EndorFun!

(Gack. I just read BH's post for today. Strange and unsettling synchronicity. Now I have to resist feeling like a cad for taking delight in exercise.)

Fruit-harvesting etiquette

Strawberries, plums, peaches: the ones that won't respond to a polite tug aren't ready yet.

Apples, oranges, lemons: no need to be polite.

Plum time

Sweet and juicy. Just reach up, tug gently, and they come fat and ripe into your hand.

Lesson 8

Perspective requires distance.

Samorost

A friend told me about Samorost, a browser-based computer game that's available online. Samorost 1 is free, and so is the first part of Samorost 2. The second part of Samorost 2 costs $10. After playing the first game, I bought and played both parts of the second. The games are simple, gentle, and fun; the graphics are attractive, and the music is low-key. Together, they take only a few hours to complete.

The main character is a little guy who lives on an asteroid and wears what look like white pajamas and a sleeping cap. In Samorost 1, he climbs inside a funky old rocket and travels to an approaching asteroid, where you help him figure out how to divert that asteroid so that it doesn’t collide with his home. In Samorost 2, space aliens steal his dog and fly away to their asteroid, he follows them and crashes his rocket, and you help him figure out how to get his dog back and then find and fuel a space taxi to fly back home. There’s no combat, no mad adrenaline rush, and almost no need for hand-eye coordination. You don't have to travel hundreds of lands to solve the puzzles, and the solutions often have a quirky humor. To solve one puzzle in Samorost 2, you have to make the guy’s dog pee on a plant.

My kind of game.

Chomp

Once bitten, twice bitten, thrice bitten . . . back into the pit.

Taking Inventory

To use jargon I learned from my husband, who is a recovered alcoholic (sober now for over five years), one of the things I've been grappling with lately is learning how not to "take other people's inventory." I often have to remind myself not to mentally criticize people's reaction to BH's illness, not expect them to be stronger, braver, more compassionate, more self-aware. Not expect them to do more, spend quality time with him, enjoy him, slow down, listen. Not expect them to stop stressing out.

I have to remember that everyone has different ways of coping--or not coping. That there is no right way to get through these days. That everyone travels their own path.

I should take my own inventory, not theirs.

Oops!

New mantra: clamp, THEN remove.

Hot Weather

The seedlings in the garden have wilted, and the cats are lying around like bad toupees.

Heavy Brains

My arms hurt from holding up BH's head!

Lesson 7

It's not about me.

Addiction

There's a solitaire game on my computer. The name of the game is Josephine. It's winnable 25% of the time, which means that 75% of the time I end up losing. But I play it again and again and again, sometimes for hours. I play it even when I know I'm not enjoying it: just one more, and one more, and one more, and maybe I'll win. I play it even when I feel naseous about the fact that I'm playing it.

Delaying tactic.

Meditation in Motion

Lightly, lightly
Dump velocity

Mist on air

Meditation

Lightly, lightly
Breathe in, breathe out

Moonrise

Lesson 6

Logical responses to emotional craziness do more harm than good.

Good Day III

Shall we go for three in a row? Today I will plant peppers and lemon cucumbers and look forward, not back. Green growth. Summer salsa. The blessing of bees.

Sun Up

The sun is just up. The air is crisp and fresh. No wind. I hear a train in the distance, its wheels grinding and groaning and squealing as it rounds the enormous bend in the pass just over the hill. Heavy load, but keeping on.

Another good day coming, I think.

Today Is Not a Bad Day

Which seems deserving of note. Huzzah!

But now I'm sitting here, worried that I've jinxed it.

The Physics of Pain

We're all trying hard not to hurt one another, but the situation is inherently painful. We're like bowling pins, banging into each other--getting set up, knocked down, set up again, as outside momentum smashes us to the floor and tosses us into the walls.

Pins and people react to forces beyond their control. The reaction is opposite and equal, painful properties are conserved, and friction sets our nerves aflame.

Lesson 5

Email jabs knives into sucking wounds.

I Don't Like

I don't like secrets. I don't like being thrust into other people's issues. I don't like situations in which I am emphatically instructed to do something and then am admonished for doing that thing.

I don't like living in a Russian novel.

Me

Just thought I'd better clarify something: I'm BH's older sister (older by seven years)--not his wife, not his sister-in-law, not his other sister (who is older than him by four years).

Tired

Rough night last night. But we all got through it. I'm glad that Ronolulu is visiting BH; that makes things better.

In an hour I'll be on the road, traveling to my sister's house to attend a family farewell dinner for her son, my grownup nephew, who has joined the Navy and leaves for basic training on Tuesday.

(Arm)Pitted Memory

I've been rereading John Christopher's The White Mountain series, which I last read over forty years ago, so that I can talk about the novels with BH's son, who got the books as a present from BH. For decades, I've recalled vividly that the narrator, Will, had a transmitter implanted in his armpit that had to be dug out, but somewhere over those same decades, I conflated the transmitter with the mind-control caps that the Tripod-enslaved humans wear.

Misremembering as I was--thinking that the Tripods enslave humans by implanting devices in the humans' armpits rather than in the humans' brains--I was flummoxed when someone told me that the humans were controlled by caps and that nothing at all was implanted in any armpits, ever. I decided that I had not only a really bad memory but also a sick imagination: I'd apparently invented an entire, bloody, flesh-rending scene about a semi-impolite body part.

Fastforward to present day. I am sitting comfortably in my chair, reading the first book in the series, seeing that yes, the humans are capped, how stupid I was to forget, of course they are capped, and here Will and his friends are fleeing, yes, this is tantalizingly familiar, my word I am enjoying this book, run Will, run, the Tripod is coming, it is ever so close and menacing, tracking you no matter which way you turn . . . Um, how is it doing that? I turn the page. Will has a nasty metal transmitter implanted in his armpit! And Beanpole has to dig it out with a knife: excruciating pain, bloody scraps of flesh, post-surgery vomiting.

Alone in my room, with great satisfaction I raise the book over my head and say, "Yessssss."

Updates Upchuck

A friend of the family sends updates to the wonderful support group that helps BH. The latest update made my gut churn. It gives the impression that I, my sister, and my mom and dad are doing nothing except attend family meetings--and that "now," as a result of those meetings, BH is being cared for. As if we had to be talked into taking action. As if the care referred to as "now" taking place didn't predate the meetings. As if we hadn't been instrumental in anticipating the need for care; as if we hadn't set up care, paid for care, cared enough to care. As if we haven't been spending days every week helping out--and been doing so for months. Years.

Bah.

I doubt the writer intended to give that impression. Just bad writing. But there: I've vomited my ugly self-pity out on the screen. Good riddance.

Creature Comfort

Sometimes when I have trouble falling asleep or wake to worry in the middle of the night, the only thing that puts me to sleep is having my cat lie on my head. He purrs. He puts his paw under my nose. And I feel comforted by his weight and warmth and musty smell.

Generations

I watched the 1994 movie Star Trek: Generations yesterday with BH and cried hard when Kirk dies (for the second time) helping Picard thwart their evil foe. I wish Kirk could have stayed in the Nexus, experiencing eternal joy. But he had to save the universe--again.

Away Time

My nephew spent yesterday afternoon at my house. We ate lunch, my husband helped him make a model rocket while I baked chocolate chip cookies, and then we three played Settlers of Catan. I think it was good for both my nephew and I to have time and space to interact away from his house, letting him be the center of attention. For those six hours he was calm--no grabbiness, no baby talk, no hyper-frantic and loudly forced cheer, no doing things he knows he shouldn't do, no tackling me or clinging for physical reassurance.

Respite isn't just for caregivers.

Metaphoria

Sunshine today

Giddifying
Intickleating
Amusemantic

Lesson 4

Illness exacerbates preexisting problems.

Disneyland

Every three or four years, I go to Disneyland. I've been doing this for decades, ever since I was a young girl, when my father took me on a father-daughter road trip to Anaheim. In fact, when I finally got a license to drive, the very first thing I did was rent a car, drive to my parents' house, and on a whim, keep driving all the way to Disneyland--hundreds and hundreds of miles, no suitcase, no plans, just up and go.

In college and after, my trips to Disneyland were often like that: all of a sudden, on a Friday morning, I'd wake up feeling antsy, and I'd know it was time. I'd convince a friend or two to come along, buy a plane ticket, and head for the Magic Kingdom.

It's Friday morning.


But I am staying put.

Lesson 3

I must not be the scapegoat for family members who have difficulties communicating with one another.

Refreshmented

Yesterday, as I listened to a group of college freshmen talk about their experiences with illness, I felt strangely comforted. Many of them have dealt with loss, grief, and anger caused by illnesses that strike the body, mind, or spirit. Many have intimate acquaintance with the illnesses that riddle our society: racism, poverty, greed. Yet most of the students have upbeat attitudes.

To that group of freshmen, the cliches are still fresh: what doesn't kill you makes you stronger, life is precious, live every day as if it were your last, value your family and friends.

Mr. Spock

I've been a fan of Star Trek ever since the original series first aired in the 1960s, and like so many other girls, I had a crush on Mr. Spock. Yesterday, BH and I were fooling around on YouTube and discovered a video montage set to Nerf Herder's song "Mr. Spock." Fascinating!

Lesson 2

I must help and comfort without usurping anyone's role.

Communication

We've had two serious extended-family meetings in the last two days, facilitated by a clinical psychologist. The process was painful in some ways, but overall, remarkably freeing. Open and direct communication helps.

One of the good things was that the kids got a chance to participate in part of the second meeting. They asked questions, received answers, and--I think--were reassured to hear the adults talk about illness and dying. The dark curtain of secrecy has been drawn aside, and yes, there is a scary monster behind that curtain, but it's less scary because we all sat in that room facing it together, rather than huddled in separate groups whispering secrets.

Lesson 1

I must get out of the middle.

Lost Boy

It's not pretty. It's not Hollywood. There is no Wendy--Heywood or Darling--to care for the lost boy.

Castle Walls

Send out a warrior, and I will fight.
Send out a preacher, and I will pray.
Send out a mesmer, and I will dance.

Send out death, and I will know.

Empathic Alchemy

Blood is sometimes thicker than gold.

Gravity on Jupiter

Sisyphus had it easy.

He had control of his muscles. And he only had to push his rock uphill on Earth.

People with ALS don't have that. It's like Jupiterean gravity is squashing them flat.

Their rocks aren't moving anywhere, up or down the gravity well.

Paranoia

Paranoia runs deep. But it doesn't run well.

It gimps along, lurching from side to side, like Frankenstein's monster. Jaundiced skin. Beautiful eyes.

Angrr

Angrr:

Tiger in the chest
Claws out.

Body Blocking

His illness is written on my body.

Eating excessively for the past six months, I've gained forty pounds, accumulating layers of fat. I tie my intestines in square knots, turn my emotions into sausages, blocking, holding on.

As if I become heavy enough, weighty enough, I might anchor him in place.

Knock Knock

Scurrying, nibbling, hiding. That's the Rat in the Walls. Knocking about at night, avoiding the light, coveting the cheese.

You only see the leavings: the dry little kernels that trace Rat's passage through your cupboards; the holes gnawed behind your stove. The fruits of your labor, tooth-marked, scattered.

The Rat lurks in your back brain.