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.
Posted in Caregiving, Video, Writing
Tagged ALS, caregiving, gravity, Jupiter, muscles, rat in the walls, Sisyphus, writing
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.
Title: 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.
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.
Last night, I couldn’t sleep.
My brother died of ALS in February 2008, after blogging almost daily about his illness following his diagnosis in December 2003. I began blogging about caregiving in a companion blog during the final year before his death. I called my blog Rat in the Walls.
After he died, I stopped posting and let the rats fall silent.
In May 2014, I finally revisited the site for the first time since his death, and I posted this:
When I first started on Blogger, my handle was Ratty, maintaining anonymity so that in my Rat in the Walls blog I could write about my brother’s fatal illness without giving away his identity. Under that pseudonym, I could voice things I couldn’t elsewhere. Rats thrive in the dark. ::: Now, five years after his death in 2008, I’m coming out of the walls and reclaiming my humanity.
I didn’t reread any of my posts in 2014. Too soon.
Now, in May 2017, I’m ready to reread them.
So, here’s the project: as I open each post and look at it for the first time since my brother died, I’m going to make a video recording in which I read the post aloud and say something about it.
I don’t remember much about the posts, except the following:
Here’s a link to the video I made last night while looking at the first post.
The original blog post says:
Title: 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.
May 25, 2017 in Life, Video, Writing
Tagged ALS, blog, caregiving, dying, grief, rat in the walls, video, video project
I miss my little brother. He died seven years ago of ALS. All that bright light, gone.
In February 2008, my brother died of ALS. During his four-year-long struggle with the disease, he anonymously published a no-holds-barred blog on Blogger, to which I contributed as “Ratty”. Under that protective pseudonym, I published a much smaller companion blog called Rat in the Walls, which allowed me to voice things about his illness that I couldn’t voice otherwise. Today, I pulled down the wall and changed my Blogger profile to use my real name instead of the pseudonym.
I’m owning the ugly as well as the love.
I saw J.J. Abrams’s new Star Trek movie this morning.
It’s hard for me to explain what seeing this movie means to me. When I was a kid, the original TV series was in its first run, and I watched each episode religiously.
“Religiously” is not a metaphor here: I worshipped the show. All throughout each episode, I sat in one spot on the floor in a rigid position, double-jointed knees bent so that my legs were arranged in a V pressed flat on either side of me. Somehow that uncomfortable position made me worthy, made me part of the action.
I clipped the episode descriptions out of the guide in the daily newspaper and taped them into a log book. I arched my left eyebrow and murmured “fascinating” at every opportunity. I bought Leonard Nimoy’s records and played them over and over. I made up Mary Sue fanfic stories to tell myself as I fell asleep at night.
My younger brother called me Spock.
Brian thought of himself as Captain Kirk. Several times before he died of ALS last year, we watched Star Trek Generations together–the movie in which Captain Kirk dies. Brian made me promise to tell the readers of his blog that his last words to them were the same as Kirk’s last words in the movie: “It was fun.”
Anyone who knows anything about ALS knows that Brian wasn’t referring to the disease.
My dearest, deepest wish is that my brother could have seen the new movie. Seen fearless Kirk, fists flying in the face of death, more than forty years after his first incarnation.
Maybe (*spoiler alert*), in some alternative universe like the one in the movie, Brian lives and is watching Kirk and Spock and our beloved crew resurrected on screen.
Maybe when Brian’s young son, Joey, watches the young, fatherless Kirk drive hellbent for that yawning crevasse in the plains of Iowa, he’ll think of his dad. And know what Brian meant.
Posted in Cool stuff, Life, Reviews
Tagged ALS, Brian Hill, movie review, my brother, review, Star Trek, the future begins