Just Ma.
So I went back to the original sentence, which was an exact quote from the shaven-head doctor in his white doctor coat and in whose office I sat, surrounded by diplomas and plastic plants. This was the day after Tamar and I had sat there together. I had made a solo appointment, so as to get more information. All the information I could, on my own, straight from the horse’s mouth, as the saying went, although did horses talk? They did not. Not in words, anyway.
“Your mother’s never coming back, Clara. Early-onset is particularly cruel because it strikes so much younger than the typical patient. It seems to go faster sometimes too, probably because early onset is often not diagnosed until the later stages. We hope that won’t be the case with your mother, of course. That’s rare. That would be the worst-case scenario.”
He pushed a box of tissues across the table and my head filled with images of other people, dozens of them, who must have come before me and sat in the same chair that I was sitting in. Your mother’s never coming back, Clara began a slow scrawl across the bottom of my brain. A wandering-minstrel-without-an-instrument of a sentence.
“Isn’t there some kind of medication that can help?”
“To slow the progress, possibly, but stop it, no.”
“Aren’t there any studies she might be eligible for, clinical trials where she could get new medicine that’s not FDA-approved yet?”
“Not at this time.”
My mind kept coming up with reasonable questions and I listened to myself say them, one after another. Part of me admired the reasonableness of the young woman sitting across from the doctor. Look at her, her hiking boots laced with red laces, her vintage Future Farmers of America jacket, the lavender streak in her brown hair. She was so rational! Logical! Articulate! Concise! Self-restrained! Exclamation marks scrolled themselves along the bottom of my brain. Little Hitler youths out for a march. Hitlerjugend.
“The brain affects everything about the body, so there are physical symptoms as well. Large and small motor skills. Stumbling, falling. Et cetera.”
“How long will it take?”
Until what, Clara? Until she couldn’t drive any longer? Until she couldn’t live alone? Until she needed a personal-care attendant? Until she was in diapers? Until she forgot how to feed herself? Until she refused food and drink? The words “care facility” exploded into huge boldface letters in my head. CARE FACILITY CARE FACILITY CARE FACILITY CARE FACILITY.
Clara.
Shhh.
I came out of that meeting and I spoke about it with no one, not even Sunshine and Brown. Not Burl Evans, the postman, who must have wondered when suddenly the name Winter was painted over with Beiler on the mailbox at the end of the driveway. Annabelle Lee, the choir director, who was my mother’s only real friend, and William T. Jones and Crystal already knew, but I did not talk about it with them either.
My mother made me promise to be silent, and silent I would be.
The only ones I talked about it with were the doctor and the nurses and the aides and the therapists, because I had to. Her next of kin was me, her only kin was me, and what that meant was that it was all up to me: power of attorney, legal guardianship, health proxy. All those terms that no one wanted to hear or think about because were they ever to become necessary it would be many decades hence and only to other people. People who were not you. People who were not your mother.
“Things that you want to say to her, say now. Even if it seems like she’s not there, like she’s not listening. Say what you need to say anyway.”
Sylvia, the kind nurse with the encouraging smile. She took me aside in the hall after the first of our monthly Life Care Committee meetings, in which we—the doctor and nurses and aides and I—went over details of my mother’s care. Clara, can I talk to you for a minute? Words that lead nowhere good, ever, but everyone stops for them anyway. I leaned against the cool tile wall and listened as she told me that the one rule was that While there will be good days and less-good days, over time the condition only worsens and If you have issues or conflicts that you need to resolve, do it now and The same thing applies to happiness, to joy. Share them with her, but do it now.
How, though? Too many of the words between my mother and me were hard words, words with tall boots, stalking across the bottom of my brain in ugly uppercase.
“You mean like secrets? Secrets I never told her?”
“Maybe,” Sylvia said. “But when it comes to secrets, particularly long-held secrets, consider carefully whether her knowledge of them would ease her mind or yours. You don’t want to unburden yourself only to shift that burden to the listener.”
Ma. Ma. Ma. Ma, look at me. Ma, remember me. Could we do it? Was it too late?
“Okay,” I said to Sylvia, that dumb word okay, but Sylvia smiled and I smiled back at her, squashing the questions that I wanted to ask, that I needed to ask in order to get the answers that I would need in the future. The future was steamrolling down upon us—second by second we were living in a future that didn’t exist a minute ago—and my mother was disappearing. Was this the way being on Jeopardy! felt when no matter how fast and hard you pressed and shook and clicked the buzzer, it didn’t make a sound?
* * *
It happened too fast and it was too big—way too big—and too much was unsaid and wrong between my mother and me before she started to disappear. Too much had been left untold and now there was too much to tell, the words locked tightly within us both, tangled up with the don’t-tell-anyone and the your-mother’s-never-coming-back. A game of Twister gone awry. Bruises and torn ligaments and broken bones.
A year went by of this new life. Visits with Tamar, Life Care meetings, the drive back and forth from Old Forge to Utica that the Subaru and I knew by heart, evenings on the porch with me and Jack Daniel’s and the solar fairy lights glimmering from the white pines I looped them around, evenings when I thought about my mother, what I had and had not done.
I had moved back in early September and now it was early September again and the light was fading. The sun came up later and went down earlier and the bitter winds of winter were nigh upon us. Oh, don’t be so filled with dread, Clara. Don’t be such a monger of doom, a predictor of pain and suffering. Winter is not a time of death; it’s a time of rebirth. Of hibernation. Of fallowness, that fertility may spring forth again come the thaw. The Greek chorus behind me, full of scorn at my fear and loathing of winter.