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.