Here I am again, reading and commenting on the sixth post from Rat in the Walls, the blog I wrote during the final year of my brother’s battle with ALS. The post is titled “Empathic Alchemy,” and you can read it below the video.
Title: Empathic Alchemy
Blood is sometimes thicker than gold.
Posted in Caregiving, Video, Writing
Tagged ALS, caregiving, changing yourself, empathy, enduring, fatal illness, rat in the walls, sibling relationship, understanding, writing
Here’s the fifth Rat in the Walls post that I wrote about my brother’s battle with ALS. The post is titled “Gravity on Jupiter.” You can read the text of the post below the video.
Title: 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.
Long time, no posts, because June disappeared in a fog of caregiving for my Mom and Dad. Now that it’s July, it’s time for another reading from Rat in the Walls, where I blogged about my brother’s battle with ALS during the last year of his life. The actual post (from April 1, 2007), is printed below the video.
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.
I haven’t posted anything this past week because my mother ended up in the hospital again, only six days after we’d gotten her home from the last medical crisis.
Can’t post about writing. Haven’t done any.
Can’t post about exercise, or cool stuff, or random pebbly thoughts. Haven’t done, seen, or thought any.
Can’t post about caregiving. Done too much.
The grandfather clock in my parents’ entryway hasn’t worked for over forty years, pendulum unswung, deliberately silenced long ago because it was “too noisy.” 12:04, its hands read. Time is an illusion; time stands still.
Sitting here, at the kitchen table, across from my aged father, out of sight of the silent clock, I am aware that time is all too real, passing even when unmeasured.
I sit and listen to stream-of-conciousness, demented rambling that lasts for hours and mingles past and present in a word salad that includes frequent, unhappy, and often fierce repetitions of “I don’t know,” “I know but I don’t tell them I know,” “Everyone is stupid; they don’t know,” “I’m not stupid; I know,” “What, do you think I’m stupid?” and “I don’t care.”
“Oh, but you do care,” I don’t say. Nor do I say, “And I care, too.”
The only acceptable responses are “I agree”, “OK,” or “I don’t know either.” Beware engaging with the convoluted substance of the rambling; instead, focus on the emotion and acknowledge it, and maybe there will be a little less anger and frustration at all the loss and the unknowing.
And the caring that is so hard to take.
At my final panel yesterday, we talked about love in dystopian society (including failed romances like the one in 1984) and the importance of relationships and community in wartime.
For myself, the discussion suddenly went meta: being at BayCon, in this IDIC atmosphere, an enclave of loving and diverse relationships that contrasts so sharply with the current state of U.S. politics–right there, in the middle of the panel, I found I had made a decision. I need to work on Red Hand.
Red Hand tells the story of an older woman with the rare ability to heal individuals dying of a galactic-wide plague that’s been decimating populations for decades, causing wars, disrupting civilizations, and encouraging isolationism. The woman and others who possess the healing ability are themselves oppressed by those who see them as a source of power and wealth, or as means to stabilize chaos, or as a threat that must be properly regulated and controlled.
At the beginning of the novel, we see the woman in crisis. She has little of herself left to give, drained by decades spent healing others while on the run from the Red Hand, an apparently benign paternalistic organization sanctioned by the remnants of the galactic government to regulate healers. She longs for a permanent home, to live in a community without fear of discovery. But she can’t have that if she continues to heal.
People will die if she stops healing.
If she doesn’t stop, she will die without having lived a life of her own.
In this moment of personal crisis, forced to flee yet another impending capture on yet another planet, she takes passage on a small spaceship captained by a man with secrets of his own on a mission that poses a direct threat to her dreams.
He’s a good guy. He has reasons.
But he’s out to capture a healer.
Here is the second video from Rat in the Walls.
For the original post (the second on the Rat in the Walls blog), look below the video.
Title: 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.