If I could speak again...
No context, just read. Also, 7 other things worth knowing today.
From Bill
This is such a good article on so many levels. Cai Emmons is a great writer, and it’s a poignant story. It made me think so much.
I kind of want you to come into it the same way I did: Cold, knowing nothing, zero context—even though that might mean you'll have to read it twice. (I did.)
Thank you to Cai for letting me run it here. (Reprinted from Medium.)
If I could speak again
by Cai Emmons
I’ve been dreaming recently that I can talk.
In these dreams I always know that my ability to speak will not last; it will come and go, so while it’s available I have to speak quickly and efficiently to say everything I need to say.
It’s a positive dream, a real pleasure to be able to express myself again, if only for a limited period of time.
Something else has drawn my attention recently too. Hande Ozdliner and Richard Silverman at Northwestern University, have been doing groundbreaking ALS research with the compound AKV9 (formerly known as NU9).
Their research is unique because it targets the source of the disease, the motor neurons. Not only does AKV9 arrest the breakdown of the cells and the mitochondria involved in ALS, but it may also repair them, restoring muscle function. They hope to bring the compound/drug to clinical trials in early 2023, first administering it to healthy people then, by 2024, continuing clinical trials with ALS patients.
RESTORED FUNCTION! Does that mean I might talk again? I understand that none of this is certain, but what is the harm in imagining I might someday have a voice again? It has lit my brain on fire! I have a whole list of things I would do.
First, I would have to sing. Songs of gratitude and praise and pure joy. I might start with “Amazing Grace” — Once mute but now I sing!
I’d summon my sisters and nieces and sing with them all the songs we were weaned on. “This Land is Your Land,” “The Fox Went Out on a Starry Night,” “Little Boxes,” “Froggie Went a Courtin’,” “Peace I Ask of Thee Oh River.”
I would stick with the melodies, but some of my nieces would do the harmony. And we would certainly sing the song we have always sung at holidays and family occasions, “Simple Gifts.” How I would savor the primal experience of singing again!
Next, I would call my son, surprising him.
Hey, Ben, it’s Mom. Remember me, the me that speaks? The chatterbox mom that likes to go on about everything?
I can hear him laughing. You’re kidding, he’d say. That’s amazing!
We would get together on the patio and speak of all the things we’ve been longing to say to each other, without the mediation of text-to-voice devices. Most of them would boil down to: You have no idea how much I love you.
I would visit all my friends, breezing in on the restored muscles of my limbs. Here I am, ready to sit on your porch and catch up on gossip. I’m ready to quip again, tell my lame jokes. I’m keen on sharing all the thoughts I’ve been keeping to myself. I want to schmooze: talk, interrupt each other, laugh. I’ll happily go ’til the rooster crows. I’ve been deprived!
At home I’ll be calling to my husband from room to room. Hey, Paul, I forgot to tell you… Come here and see… Let’s howl with the neighbors tonight! (A practice that began with the pandemic and hasn’t let up.)
With my restored voice I’ll resume my volunteer stint reading with kids. A boy and a girl were assigned to me, second and third graders who became my friends. They were observant little critters who liked not only to read with me, but to play.
What fun we had! We didn’t really need to speak to have fun. The girl loved surprising me from behind and making me laugh; the boy loved showing me his martial arts moves. But speaking and reading were the conduits to our connection. Hey, kids! I’m back with a voice again — let’s read and play!
Next, I’ll call my senators and representatives to register dismay about the state of the country. I’ll rant about the inhumanity (and insanity) of recent events, trying not to sound like too much of a crackpot. Then I’ll realize that sounding crazy is a completely appropriate reaction to a democracy teetering on the brink of autocracy. At that point I won’t care about delivering a tirade that sounds unhinged. We should be unhinged, and now I can express that fully! Let’s change things fast, I will plead with my new voice capable of nuanced inflection.
With my voice restored it might be time to return to acting. I’ll enroll in a class, something I haven’t done for years. Mah, may, me, mo, moo, I’ll recite along with the group as we learn to breathe correctly to enhance our resonance.
At some point it will occur to me: I’m talking too much; I’m making too much noise.
If I’ve learned anything from being deprived of my voice, it is that shutting up and listening has some advantages. I’ve sat on the edge of many conversations over the past year or more, incapable of jumping in, so I’ve had to resign myself to listening. I have taken on this new role with both sadness — it’s hard to be sidelined — but also interest. My silence has enabled me to watch people and listen more closely to what is being said.
I’ve been listening more keenly to the natural world as well. Right now it is the sounds of summer: the early morning birds, the lawnmowers, the neighbors’ bleating goats. The comforting domestic sounds: the brewing coffee, my husband puttering in the kitchen as he concocts a breakfast soft enough for me to swallow, the scritching of my own pen.
Listening opens me up to sights too: wind huffing through the leaves of the grapevine just outside the window, the panoply of different shades of green, the shortening and lengthening shadows creeping across the lawn.
Listening takes me inside my own body too: the growling of my belly as the recently injected meds go to work, the slight cracking in my neck as I move my head. I feel the twitches — fasciculations — throughout my body that are indications of weakening muscles, most recently in my eyelids.
Listening without speaking has made me feel like a human antenna, maybe a satellite dish, receiving information from so many quarters I ignored when I was talking. Near and far, happy and sad.
AKV9 will not be administered to ALS patients until, at the earliest, 2024. It is impossible to say now how far the disease will have progressed in me by then, if I will even be alive, not to mention how effective the treatment will really be. But if my voice were to be restored — miracle that that would be — I would certainly respond by talking up a storm, experimenting with volume, tone, inflection. I would shout and whisper and sing.
But I hope I would remember what I’ve learned from my long term of silence. I hope I would continue to observe the world without impatience, receiving its wide array of messages. I hope I would listen to my friends attentively, deeply, without trying to interrupt. Being mute has humbled me, and humble is a way I would like to remain.
You can find out more about Cai Emmons, and her upcoming new, Unleashed (Sept. 6) here.
7 other things worth knowing today
The Justice Department is under pressure to release an FBI affidavit showing the justification for the seizure of documents at former President Donald Trump's Mar-a-Lago home. Meanwhile, there are reports of heightened threats against federal law enforcement, after a right-wing news organization doxxed two FBI agents involved in the search. A search warrant released last week suggested the Justice Department had probable cause to conduct the search based on possible Espionage Act violations. (Note: despite its name, the Espionage Act covers a multitude of crimes, not just spying). (Reuters)
Author Salman Rushdie 75, was left severely injured after being stabbed on stage at an event in New York state. He's still in a critical condition but "his usual feisty and defiant sense of humor remains intact," his son says, and he was able to speak to his family. (BBC)
Huge mystery! Big deal! Then people forget, but it's solved, sort of. The partially pieced-together story of how an Air Force captain disappeared for 35 years and then mysteriously reappeared in the Bay Area. (SF Gate)
A new study raises concerns about climate change-fueled floods dropping massive amounts of water on drought-plagued California — an unlikely sounding scenario that has actually happened before. “Every major population center in California would get hit at once — probably parts of Nevada and other adjacent states, too,” says study coauthor Daniel Swain of UCLA. (USA Today)
Oh well. The Federal Elections Commission has rubber stamped a proposal from Google that could make it easier for political campaigns to skirt email spam filters. Commissioners voted 4-1 to approve a Gmail pilot, agreeing with Google that the program wouldn't run afoul of election rules. (Engadget)
How did I miss this? Better late than never: the winner of the 2022 Hemingway Lookalike Contest in Key West. (WSOC)
Video to make people feel good. This one is actually kind of old, but it started making the rounds on social media again recently. (Funny how that happens. ) Enjoy!
Thanks for reading. Photo credit: Pixabay. Want to see all my mistakes? Click here. See you in the comments!
What a great article. It left me speechless. ;-)
Nothing like starting your Monday with a big dose of gratitude. I will practice listening more today.
Thanks Bill.
I will save this forever and use your experience Cal as a reminder of how precious our lives are. Thank you for sharing a glimpse of what it is to be living your best with ALS. I pray along side you for this new medication. I will be waiting to hear you sing.