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.