A Post About Making Stuff
Before it gets lost in a storage bin
As my Mom descends further into the unknown landscape of Alzheimer's, I find myself pondering about what I don’t know about her life, about my Dad’s life (he died of complications from Alzheimer's in ‘21). And what does this pondering reveal about how I want to live now. I certainly know a lot about my parents and what they brought to the world, a lot about what they have left behind (and partly I’m referencing their stuff, the two full storage bins - one contains a sword my Dad got in Egypt, in case anyone is interested - but that’s for another post!). Because their minds betrayed them in the end, there is so much I’m sure I don’t know. And sadly, when I discover it, Mom will be gone. Any question I have now, she is no longer able to answer. A part of me breaks when even the simplest question, about whether she should attend a holiday gathering, brings stress and uncertainty to her eyes.
As a creative human, writer, performer, photographer, how I share my stories has always been through that creative lens. And so now that I’ve lived most of my life (I’m 60 now! What?!! No?! YES!!) and having experienced the gradual drip of loss of both my parents, what do I still want to tell, to share, to propel out into the atmosphere? And how do I do that?
I don’t wait. I think that’s what I love about having this vehicle to drop into when ideas, feelings, stories occupy space in my brain and heart. What good are they stuck in that wasteland when I can elaborate here and then move on to being present for what moves me next.
I’m not waiting. Today, I’m going to drop some of what I’m working on, in this space. As a means of sharing, connecting and as a means of documenting where I am in this moment. What creative gobbly gook is pulsing through my little noggin.
This Monday, I leap into a small rehearsal room, buoyed by dear friends, artists and theater makers joining me, to give life to a solo theater piece that for now has mostly lived on the page. I’m so freaking grateful and gleeful, and a hella nervous, to finally arrive at this place where we can breathe movement into these words and moments that I truly hope will impact people in a way that engages their spirit and uplifts their energy toward action and change. And that it will allow them feel the feels, giggle a lot, and feel seen. If it doesn’t then I surely don’t want to waste anyone’s time.
Here is a snippet from the show (which has yet to find a title - help is appreciated!) and is about my adventures as a nonbinary queer human navigating a biologically female cancer (I’m still here btw) and the heteronormative patriarchal broken healthcare system. Ok. You have been warned.
MAL
My name is Mal. My pronouns are Mal or they/them. And I fucking hate pink gowns!
V/O
Actually, they’re blush rose.
Lights shift/sound - time has paused. MAL crosses stage.
MAL
The story of my body is messy. I have deep out loud moments of self awareness, interwoven with distance and disconnection, sometimes an aching insecurity. But always a cellular level of vigilance. The world has daily demands of me that I can’t meet. That I don’t want to meet. How do I dare to fully show up as me? To be so alive as me? Will this fucked up world ever catch up? I want to awaken with ease to all of me. To be seen and believed as my full self, as how I see me. Standing grounded and completely fabulous in my queer nonbinary body, mind, and heart.
(Beat) Ooh, I should get a tattoo. I may ask for suggestions later.
Light shift
But ovarian cancer arrived in my 43 year old body. Barging into my bits like a flashing red STOP sign.
(Sound/Light effect?)
V/O
Actually, it’s dark blood red.
Sound cue: Horror music stab - from Psycho or something similar
Volume of medical sounds speeds up/warps
And scene!
Okay, so are you intrigued or no? At the end of the week, after running around in our small rehearsal room, I’m hoping that I’ll have a decently clearer direction as to what still needs to be worked out. And, that we’ll have destroyed many pink gowns in the process.
I’m also working on three novels, two are middle grade fiction and one is young adult fiction. All while still trying to find an agent/publisher for my debut novel that I’ve been working on for over ten years and really really want it to be in the world. And like now. I’m growing fatigued by the traditional Children’s publishing world that has thick high walls that are frustrating to leap over. But as I repeat to myself over and over, never give up. I know I will get there, I’m still seeking the way forward. (BTW, if you are interested in reading a middle grade novel about a non-binary 11 year old who faces cancer treatment while their newly adopted pittie mix dog goes missing, and never gives up looking for him, no matter how shitty they feel, let me know. I’ve had many readers over the years, including agents who have read the entire novel only to say, sorry, not a great fit for at this time. Waaaah. But as Elizabeth Warren says, I will persist!
The other novels are all in various draft modes, so it’ll be a while before they’re ready for the cozy lamp on your night stand. But stay tuned, please. Thank you. But I will share nuggets of what they’re about. One middle grade novel is about a queer youth summer camping program that spends weeks hiking in a forest, and the protagonist may or may not be finding Bigfoot. But definitely does find out things about themselves. The other middle grade novel is about a nonbinary middle schooler and their basketball team who fight the school committee because their mascot and logo are racist and harmful. And the young adult novel is based loosely on my experiences in high school, in the early 1980’s, knowing I was queer but having to navigate keeping all my feelings towards a classmate and friend a secret. And a deadly accident that changes everything.
Here’s the first page-ish of my completed debut middle grade novel:
Welcome To Chemoville
Chapter 1 The Plan. With extra drool.
How do you tell your best friend that you have cancer?
I should tell her while we’re in a bouncy house. We’ll be bouncing and laughing our butts off so much, I can say it mid-bounce and Dev probably won’t hear it. Or one of us will have puked. I could tell Dev using a kazoo? No one understands anything when you talk into a kazoo.
Aaaah! I need more time to come up with an actual good plan. I could tell her after shoving a whole bag of marshmellows in my mouth? Or while I’m in one of those giant inflatable dinosaur costumes?
The porch stairs feel warm under my butt as I rub Zeke’s soft as mittens triangle ears. A warm breeze blows through my thick short hair. I don’t even know how I feel about this stupid cancer thing let alone how to explain it to Dev. Words are tumbling around in my brain like Zeke’s tennis balls in the dryer. Dev’s going to be here any minute. I need more time. How am I going to say it? I could act it out like a bad scifi movie using only sound effects and my Yoda puppet? But Zeke chewed off one of Yoda’s eyes, so that would be a bit weird. Or would it? I hate this! Words get in the way of everything.
Dev’s Aunt died a year ago, from drum roll…cancer. Maybe I can ask Zeke to tell her and she’ll get totally knocked out by his breath.
“Zeke, can you learn English in like the next two minutes?” I drop my chin on his warm head. His tail thumps on the wooden stairs.
The cancer I have is called Hodgkin Lymphoma. Who came up with that name? I need practice saying it out loud. Even though when I do, it’ll make it more real. What if I don’t say it at all? Maybe it will go away.
“Should I just practice saying it to you, Zeke?” His tail thumps some more. “You always listen. You don’t get mad or impatient. Unless you have to poop.”
He replies by licking my face to death. Ooh. Wrong word. I definitely need practice:
“Hi Dev, how’s your day going? I have Hodgkin Lymphoma. It’s a cancer that has large weird shaped cells. Want some Chex mix?”
Maybe Dev and I can make up a better name. Something less cancery-hard to pronounce-sounding. It might help me feel less numb and underneath that, something else? Like, we could call it Gummy Worm Cancer Party Mix, because they’re weirdly shaped and squishy but are super tasty. But then no, because I could no longer eat them. I’m freaking myself out! Thoughts are flying around in my head so fast it’s like there’s a hurricane in there. My brain needs to duck or it’ll be hit by a lawn chair.
Mom turned 91 on December 2nd. She didn’t know it was her birthday. She didn’t know how old she was. She did know she didn’t like the idea of being 91. She did love that we were there with her. I wish I could just say to her, with all the love in my eyes flowing into hers -you don’t need to hold on anymore. Your life is not yours as you would want it. It’s controlled by a cruel impenetrable disease that is only going to make you less you. It’s time to go, Mom. You are not living. Not even close to how you would want to live. And it’s so hard to witness and experience this slow continuous loss of you. My hope is that she falls asleep one night and doesn’t wake up. But this is only a wistful wish without an anchor. And so we continue with what is. She knows who we are and that she loves us. And that is so much more than many have. Maybe this year for Christmas, I’ll put something in the eggnog just to assist in getting more in the spirit of things.
For now, the promise, the commitment, the necessity to keep going, to show up for what moves me, has to maintain being a priority. I know I will slip, the ol’ self-sabotaging habits may jump in the way from time to time, but I know those are temporary blocks. And I’ll do my best to blast the F of them out of the way and keep showing up. This is now. And I’m grateful and radically amazed to be here.
Thanks for being here with me. Love to all. And a spiked egg nog if you so wish.
I really like the way you keep going. It's important to makie the stuff that exists in our heads. Get it out there. I'll be waiting to read all of your books.
🫧✨🫧