A Mama Levy update… because it’s been a while.
March 7, 2022
She’s fine — I say that first because I don’t want anyone to think this is bad news. It’s just the latest on our journey with dementia and her care and all the emotions that go with that.
I wrote most of this sitting in an airport crying because I was leaving her to come back to California and this weekend was just a rough one — she was wonderful and so glad I was there, but man, did my heart hurt by the time it was over.
Quick update for anyone who doesn’t know — we moved Mama Levy to a new facility last year, closer to where my brother lives. Since we moved her last September, getting out to see her has been much easier (still a plane flight, but no longer a long drive on top of that).
It’s been so great to spend more time with her, and this place has been wonderful for her. She’s more vibrant, encouraged more to get out of bed and be with the other residents. My brother and sister-in-law get to see her more… the great grand kids even visit. She has a better life.
But of course, Lewy Body Dementia remains an unbeatable monster slowly but surely stealing her away. It’s stunning to see her read things perfectly but have no comprehension of the meaning behind the words she still recognizes, to see her no longer connect with anything while the TV plays in front of her.
At Christmas, I spent a week with her. The first day, she was happy to see me… she knew I was there for her… but she didn’t know who I was. I’ve gotten used to needing to remind her when I arrive, but that day it never kicked in for her. I was just some nice lady there visiting her.
The next day when I walked in, she lit up and said, “My baby is here!” And the rest of the visit she was clear on who I was.
But it was a reminder that her memory and the tenuous links that keep us real to her get weaker every day.
Yesterday I spent the better part of the day with her. She knew I was her daughter, but she no longer can tell you my name, even if she’s looking right at me. But she loves it when I’m there. She holds my hand, rubbing the palm like she’s trying to make some hurt go away.
And she tells her stories. There’s nothing concrete to them on my end anymore. Her brain links 500 confused details together that only make sense to her. But the telling of the tales is all her… big personality, threats to beat people up, deep emotion when something makes her sad.
I’ve talked before about how much I miss my mom even though my mother is still alive. But yesterday… yesterday it gutted me to realize that even when I’m looking right at her, listening to her talk, I miss her desperately. The ache for one more moment with mom… the thing my mother can’t give me anymore… is heartbreaking.
But then she reaches over and hugs me, kissing my cheek around my mask, and says, “I love you, baby.”
I don’t know how much of that is my mom reaching out or my mother’s muscle memory… the thing she knows to do and say even if she doesn’t understand why anymore.
But it makes my heart swell every time I get to hear it.
Prior posts about mom:
What’s in a Name?
August 3, 2011
Naming characters is part of what we do as writers, and while I have a few names that I have to constantly remind myself to not use again (I have a thing about Gabriel and Emma… I constantly have to steer myself away from those for some reason), I mostly enjoy the process of figuring out what moniker goes with the latest characters I’m crafting.
I do try hard, though, not to spell names too oddly, which is a byproduct of my own name, no doubt. I used to joke that my parents spelled it the way they did so I’d have to spell it for the rest of my life. And in fact, I have to spell it and explain it constantly. So for the record it’s pronounced Nicole but spelled Nice*Ole. That’s how I teach people to spell it… “It’s Nice and then Ole.” I still get all manner of spellings, though, and mispronunciations… most commonly, I get something that sounds like Neecee-ole, or Nichelle, and for some reason, people will look right at my name and call me Michelle. That one’s just weird.
I found out a few years after I moved to Pasadena from my French chiropractor that mine is the antique French spelling of Nicole, before they dropped the extra “e.” That makes sense… my mom’s people in New Orleans are the ones who came up with the spelling. I love them, so I try not to be too mad, and really, everyone notices it, so I guess for a girl who got involved in entertainment, it worked out okay.
For some reason, Niceole was never hard for me to spell. But my middle name? There were many hours spent trying to comprehend how Rachel could sound like RayChul and not be spelled Raychel. I used to get red check marks on my papers because I was sure everyone else was wrong and kept spelling it with the “y” until finally my favorite teacher managed to convince me to let it go.
Of course, Niceole and Rachel both pale in comparison to the spelling and nickname nightmare my life would’ve been had my mother gotten her way about naming me. The woman gave birth to me, and did so at great risk to her own life… I realize this. (My parents were Rh incompatible, and thus, my siblings and I should not exist, and yet, we do). But had my father not shown up at the hospital in time to thwart her, my name would’ve been, I kid you not, Sacagawea. It’s a lovely name if you are a historical figure who helped blaze a trail in the new world. But consider it… my name would have been Sacagawea Levy. You can see how, by comparison, being tortured with spelling Niceole over and over again is nothing. Especially since I’d probably have massive therapy bills from growing up being called by every permutation of “Sac” imaginable, everywhere I went through childhood and adolescence.
By coincidence, at least, so says my mother, I discovered while I was in grade school that her two favorite soap opera characters were Nicole Drake on “The Edge of Night” and Rachel Cory on “Another World.” But she swears that has nothing to do with the name I ended up with. I’ll let you all draw your own conclusion, but I think you can guess what I think of that denial.
While we’re on the topic of names, a tip to my fellow writers… did you know that until your character is referred to by name on screen so the hearing audience has heard it, your closed captioners cannot use their name to identify them? Yeah… I once had to identify a main character in a show as (woman) for three episodes because no one would say her name. Just a little fact to file away for when you watch cuts of your pilots before they finish post.
So what are some of my favorites from the character names I’ve come up with? Tops is from a short story I wrote called “How to Be a Man” about a young boy learning how to pick his battles thanks to a story his grandfather tells him about a legendary moonshine runner named Shamus Amos Jamison. And you always had to call him by all three names… never just Shamus. I’m also pretty fond of the lead in my pilot “Thin Air” because Emerson Carter’s name somehow conveys the weight she carries on her shoulders.
And what about my favorite character names from that long list of TV shows I’ve watched? Here’s a few I really loved:
Frank Pembleton… Tim Riggins… Addison Montgomery… Sonny Crockett… David McNorris… Denny Crane… Jonas Blane… Miss Parker… Liz Lemon… Wilhelmina Slater…
I could go on and on. But of course, no name will ever top one I have loved unconditionally since hearing it… a gem from my love of cheesetastic movies which may be one of the most unforgettable monikers ever:
Sho’Nuff, The Shogun of Harlem (God love you, Julius J. Carry III).
And OMG I just discovered you can watch “The Last Dragon” at Crackle — get the to the cheesetasticness!
http://www.crackle.com/c/The_Last_Dragon/The_Last_Dragon/2460332
As far as I can tell, everyone I know has been victimized by what I like to call “mom’s favorite phrase.” Of course, most of us have a different one to relate… a mom’s response to how you dress (You’re really wearing that?) or how you do your hair (Did you see that on some TV show and think it looked good?) or that thing she says that makes it seem like she lives to embarrass you (Oh, I know she doesn’t like it, but I’m her mama, so I get to call her “baby doll” no matter how old she is.)
My mother’s favorite phrase is guaranteed to lift my shoulders to my ears, tense up my neck, and make me clench my teeth. “I could be dead by… (insert necessary time frame here).”
–We try to plan a visit to my brother’s family in the fall. “But I could be dead by October.”
–I invite her to spend Mother’s Day with me in the city. “But I could be dead by that weekend.”
–A friend invites her on a road trip to Nevada. “Well, she wants to go in April, but I could be dead by April.”
Why is that the phrase I wish I could get some higher power to permanently ban from usage where my mother is concerned? Well, because frankly, I don’t like to be reminded that there will be a day when she will be dead by… I know it’s inevitable, I know it’s the way things are supposed to work, but really, who wants to think about that?
She gets mad at me every time I remind her she’s not allowed to say that to me, and tells me that I take everything she says too seriously. I’m sure that’s true to some extent. She is, after all, the person who could pronounce a death sentence over my social life for days, week, and months at a time for an 18-year period of my life… I learned to take what my mother said very seriously during those 18 years. And I know that what she really means is, “yes, let’s make plans, but just know that things can change and don’t get mad at me if they do.”
Recently, though, I’ve had a new thought about the dreaded “dead by” phrase. And I think it’s bothered me my whole life not just because every time she says it, an image conjures of a world without my mother in it, but because those words have always sounded like a reason not to do things… not to make plans or chase a dream. Instead of hearing it the way she meant it, I heard, “why bother?”
As I worked on my pilot “Thin Air” and as I struggle through the outline for my latest, I’ve realized that’s the question that interests me most about all my characters. Why bother? Why would I bother to write them? Why would you bother to watch them? What is it that makes them say “to hell with that, buy the plane tickets and let’s make the plans”? And what makes them shake their heads and say “why bother”? Exploring those issues with my detectives in “Thin Air” and with the driven and yet incredibly vulnerable McKellar family in the “in progress” script has led to whole blocks of writing time spent self-debating why a son comes home to a father he no longer believes in and why a daughter can’t begin her future until she confronts the worst moment of her past. It’s finding those answers that reminds me, I’d do this every day for the rest of my life, even if no one ever paid me (but really, someone should pay me!)
As it turns out, for all my moaning and groaning about it, even when my mom says IT, she usually gives in and makes the plans. Oh, there’s a lot of bitching and me having to plead and sometimes get a little snippy, but we usually end up on the plane to my brother’s, or she comes to the big city for a week of shopping and running around crazy with yours truly, or she accepts her friend’s invitation and goes on the road trip, which leads to her annoyance when I tell her to remember to call when she gets where she’s going (Since when do I have to call you? I am the mama here).
Because sure… things can change, plans can blow up, and the risks… oh, torturous! Technically, she’s right. She could… we all could be dead by… but making the plans… making the plans means we hope we’ll still be here… which is why I like to think she always ends up making them.
And you know what she never says it about? She never says it about the day she gets to see “written by Niceole Levy” on her TV screen. She has definite plans to be here for that. And I’m plotting away at this laptop, doing my best to deliver.
Let’s make the plans!
niceolelevy 