One of the tools I used in the early years of creating The Burning Light of Two Stars was “writing practice.” Writing practice was developed by Natalie Goldberg in her seminal book, Writing Down the Bones, and it’s a method for getting past the editor and digging deep into whatever it is that needs to be said in the moment. It’s a way of finding the truth, the story under the story. I teach all my students writing practice. It’s one of the core practices we use in all my classes and retreats. It’s the best way I know to create the raw, unedited material that later gets shaped into stories on the page.
You can develop all the craft in the world, but if you can’t access raw material that touches people in a deep, soulful, emotional way, all you have is pretty language. What touches people when they read is the truth, the raw, hot, vibrating truth.
This piece is typical of hundreds of writing practice exercises I generated in my early years working on The Burning Light of Two Stars. I wrote it alongside my students, writing while they wrote. The initial assignment I gave them was, “Make a list of ten things you know the real truth about.” After fifteen minutes, I had them share their lists out loud.
My list included: “I know the real truth about being a famous author.” “I know how to surrender to serious illness.” “I know how to make peace with a mother you’re estranged from.” “I know how to heal from child sexual abuse.” And “I know the truth about having a mother with dementia.”
Then I asked my students to choose one of their ten topics and write about it in detail. Here’s the one I wrote about having a mother with dementia:
I know the real truth about having a mother with dementia.
In the early stages of her dementia, you will face her denial, resistance, rage, and a full throttle battle for independence by an 83-year-old woman, your mother, a full-on war that rivaled all three of your teenagers put together. There was the battle over the car keys and driving, over who gets to put the pills in the pill boxes, over whether Mom could live alone and for how long, and whether her damn caregiver and her fucking cat would stay in her house or be tossed out on the street to live in her car. But then, at one point, the fight went out of her. Whether it was the 20 mg of Zoloft or the inevitable progression of the disease, she gave up, and there was surrender, surrender that made your mother pliable and placid, agreeable and empty, easy for you to manage, yet not at all the woman she had always been. You are daughter now to a shell, and it’s not easy being the daughter of a shell.
When your mother has dementia, the phone rings a dozen times a day, the same questions, the same conversations, the same circles of words again and again and again. You hate those calls, but you love those calls. They keep you tethered to the one true heart that brought you into this world, the one true heart that has been beating next to yours whether you were speaking or not, estranged or reconciled, she has been there. And those phone calls remind you of your connection, and you miss them when they stop. Dialing the phone has become too confusing for her, and your voice mail no longer fills with the sound of her voice.
When your mother has dementia, things only move in one direction, and that is toward forgetting, fragility, disappearance, and death.
When your mother has dementia, you go to an early-stage memory loss group with her every Tuesday afternoon. Eight people with memory loss and their significant others—wives, husbands, children—all gather in a room and talk. Then the two groups separate. You will go into the group for caregivers, while your mother stays behind with the group for people with memory loss. After the meeting, every week, your mother says, “I’m not coming back here. I’m not like those other people. I don’t have a problem with my memory.” You say nothing. You know by next week, she will forget that she said she wouldn’t come back, and that when you call and tell her it’s group day, she will compliantly go along.
When your mother has dementia, you and her doctor take her off almost all her medications. She is 85 years and has said repeatedly “I want to quit while I’m ahead.” So, you take her off the Coumadin and the heart pills and you stop taking her to the eight specialists she was seeing when she first moved to town—the heart doctor, the kidney doctor, the lung doctor, the neurologist, the foot doctor and on and on. Now she no longer rants about it all being a big racket for Medicare. She doesn’t have to. You bring her to her gentle GP who is on board with not doing anything to prolong her life. She sees him once every three months and that is all. Ironically, she is healthier now than she was when her life was medically managed by a dozen 8-minute doctor appointments each month. Sometimes you think she will live forever.
On the morning of your oldest son’s 36th family birthday dinner, you have a conversation with your partner about whether or not to invite your mother to the party, an event that she would have attended a year ago, as she has attended every birthday dinner for your family since you moved her here, five years ago. When you realize that she eats dinner at 5 PM and is in bed by 7:30, and that your guests will not arrive until 6:45 at the earliest, you recognize that by the time you sit down to eat, your mother will be begging to go home, and that you will have to leave your son’s party to drive her across town. You decide that she no longer belongs at your dinner table. It doesn’t matter that you already told her about the party. She will never remember it was going to happen.
Whenever you are with your mother, you will feel a potent cocktail of boredom, love, and guilt. There will be times you want to avoid her because it is tedious, boring, and painful to be around her, to hear her repeat the same few stock sentences remaining to her again and again. You will grow to dread even the sweet ones like, “Your children! You and Karyn have done such a good job with those kids.”
When your mother has dementia, you will kick yourself for wanting to leave her room as soon as you get there, because today she recognizes you and tomorrow, she may not. You know things only get worse from here, and that you should appreciate the small things—like the way her face still lights up with joy every time you walk in the room—but still, when you arrive, your intolerance for the lifeless sameness starts propelling you out the door fifteen minutes after you arrive.
When your mother has dementia, you live in a constant state of grief as she dies a little bit more each day.
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