“No,” she said, “this is all good. Isn’t it, honey?” She burrowed in at me with her eyes.
“It’s good, Mama,” I said.
She gathered up her skirt around her legs so it wouldn’t hit the rubber wheels of the wheelchair, and Grandma Steiner pinned the lace thing on the back of her hair, cockeyed. Connie reached over and straightened it, discreetly, and took the flower-covered walker. I took Abby’s and Rory’s hands, and down we all went, to the wedding chapel. The funny thing was, the sight of a wedding party, much less a wedding party with two Asian girls, one sixteen and one a tot, an old Jewish lady in a blue hat with veil, and a bride in a wheelchair, drew fewer stares than it would have in Sheboygan. I mean, people didn’t look up from the craps table. We wheeled into the anteroom of the chapel, which was sort of under-the-sea decorated, and waited for whatever Matt had up his sleeve. There was an interval, where we all sort of stood there, while Stella’s husband and everybody else sat down. It looked like a regular church, except up there at the front, on a side table with drapes and bows all over it was this wedding cake the size of the fake Eiffel Tower across the street. “Is this how people get married in America?” Tian whispered.
“Not usually,” I said.
And then, he appeared.
It was, sweet Christ, Elvis.
On the whole, however, the serenade from the Elvis impersonator was not so bad. He was a guy in his twenties, with a dynamite voice, and he didn’t schmaltz it up too bad. He was the leather-jacket Elvis, not the fat gold jumpsuit and sunglasses Elvis. And the song he sang, about fools rushing in, but being unable to help falling in love, had my mom holding her head back so that she wouldn’t cry and make her makeup run down her face. I saw Matt’s daughter, Kelly, this tall blonde girl with the body of a beach volleyball player, giving the come-over eye to the Elvis, who saw it, too. He hung around, when he would normally, pardon me for this, have left the building.
Then a recording came on, of the song Rory called “Taco Bell’s Cannon.”
Grandma Steiner began to help my mother up.
But my mom put her hands on the arms of the wheelchair and gave me this look like Rory when she’s done something smart but kind of mischievous. “Head fake!” she whispered. And she said to Grandma and Connie, “I just let you guys wheel me down here for grins. Thanks for the ride.” She stood up, and, with raised eyebrows, she gently shoved the decorated walker behind a row of chairs. She reached out one hand for me. “Let’s do it, Gabe,” she said. And she took one step. She wobbled a little. “Don’t worry,” she said. “It’s not being sick. It’s just two-inch heels and nerves.”
Then she put on the Gillis game face, pulled herself up, and held my arm tighter. And she walked right down that aisle like a racehorse, into Matt’s arms.
That’s the end of the novel. But it’s not the end of the story.
THIRTY-SIX
Psalm 65
EXCESS BAGGAGE
By J. A. Gillis
Distributed by Panorama Media
Dear Reader,
It has been quite a few years now that we’ve spent together. That is why it’s so difficult to say that now it’s time for me to go. I have to say it quickly, or I’ll take it back. It’s so difficult for me to let go of this column, more so to give you up. You might think that the reason I’ve written this column was that I believed that I could help you. Well, certainly, I wanted to do that, and I was curious to see whether I could. But the truth is, the way it worked out, you helped me, immeasurably, to survive the worst passage of my life. When you wrote me, with problems that made my own seem small—my battles with multiple sclerosis, a deceitful and yet good-hearted ex-husband, and raising children alone as a disabled person—you helped me. You helped me go on, and to see that there was hope for me as long as I could breathe out and breathe in, love a song, listen to my child laugh. You were my lifeline. A version of this column is going to show up soon in a magazine once a month, and I hope you run across it. But if you don’t, know this; I gave you advice, and, if it helped, I’m grateful. But you gave me back my dignity.
Sincerely,
Julieanne Gillis
It was Gabe’s idea to combine our journals and massage them into a novel.
I had no idea about his journals, and how hard it must have been for him to concentrate on writing all that down. Of course, he’d read every word of mine.
You must think that we all lived happily ever after. No one does, though. Eventually, a version of that flower-bedecked walker sat in my closet, and there were times when I used it. There were times when I took ballet. There were times when I stayed in bed. There were times when I didn’t dare drive Rory to school, and times when I felt I could have driven in the Indy. So far, I’ve never had a full-out relapse. But I’ve lost a tiny little bit of ground every year. And yet, my bones are strong, and I will fight this thing until it wrestles me to the ground. If it’s up to me, that’s going to take a long time.
Matt drank a little more than a little.
He wasn’t a drunk.
His parents drank.
We had that in common, and there are two ways that can go. I didn’t drink much. He drank whenever it was safe. He never drank anywhere close to his work, and he was a damned good surgeon.
But finally, I told him off about it. And instead of getting defensive, he got quiet for a while. Then he agreed that he was married now and a dad to Rory, so he toned down the big-football-road-trip stuff. These days, he has a full glass of Merlot when I have my half glass. He found out mighty quickly that I wasn’t one of his nurses or interns and that he couldn’t set up a plan for our life, or even our weekend, and outline my place in it. That led to some long and not-very-romantic nights, in which both of us got our Irish way too far up. It was natural. We didn’t really know each other when we walked down that long aisle in Las Vegas. I didn’t know that he hand-washed his wineglasses. He didn’t know I flooded the floor of the bathroom when I washed my face.
And probably, we weren’t in love when we got married.
I think Matt believed he was marrying the girl he’d always wanted, Little Miss Prep, Julieanne Gillis. I knew that I had stumbled on what was potentially a wonderful and safe thing. But for me, it was probably more a sense that we were well suited to each other than a grand passion. I thought we would be good companions. I would be safe. He would be, in public at least, proud.
Is that a terrible thing to say?
I’m way too far past wanting to gloss things over. It’s the truth.
He became my mate. He came through. He came through when I tripped over something and took it out on him, and told him he was a sicko for wanting to be married to a woman who was a wax figure about three days of the month. His jaw set, but the next morning, he brought me a mug of coffee. And we clinked cups. We went on. If he got impatient on the days when I couldn’t remember whether I wanted my laptop or my blow-dryer, he didn’t show it. He used to throw all kinds of fancy-dress things. Now, we just do one, at Christmas, because they take too much out of me.
He thinks there are compensations for the hostess I might have been, in the confidante that I am. And you know what? He’s right.
I’ve never spoken with Leo again, except through letters and e-mails.
When she was old enough, Rory went out there for a couple of weeks in the summer. She came back furious, saying Joy was bossy and mean to Caroline. This lacerated my heart, and I wrote Cat, begging her to come to us in Boston. But she had decided to go to New York, to try to take ballet seriously, to live with Joy’s sister. She writes, and I have plans to visit her there next summer. I don’t know how it will go. I know Caro never stopped loving me, but she’s as bullheaded as I was at her age. It will be hard for her to admit that living with Leo, dearly as he loves her, was a bad idea.
I’m hopeful, because we can reach each other around dance.
We always could. I’m hopeful she’ll let us help her along, and gradually, she’ll slip in thr
ough the back door of this new family. So I’m going to praise my daughter the dancer and try to put my daughter, the defector, behind us. Caroline never grew taller than five feet two and I’d be surprised if she tops a hundred pounds. Her turnout was amazing from the time she was a little tiny kid, and her grand jeté startled Leah when she was small.
She could do it. She could make it.
It would be an ugly life. But it would be punctuated with great bursts of exaltation.
Which, as Gabe would say, is mostly like life, for anyone.
With a little bit of hurt pride, Gabe said after the wedding that I finally had my new life, so he wasn’t going to be around that much. I knew Gabe well enough to know he protested too much. He started coming out the first summer, and now he and Matt are basically thick as thieves.
Matt wanted a child with me.
I told him that it was out of the question. We were both on the nether end of our forties by then, and adoption agencies weren’t going begging for wobbly old mothers when there were legions of the young and strong variety available. One summer night, though, he brought home a picture of a two-year-old girl, who’d been born in Vietnam, the daughter of a prostitute, with a cleft palate that extended up into her nasal cavity. I put the picture facedown on my lap. But later that night, I picked it up. On the telephone with Cathy, we reached the mutual conclusion that the very thought of this was madness. I was ready to tell Matthew that the next morning, when, instead, I signed the papers.
Matt wouldn’t work on his own daughter’s face. But he scrubbed in, for eleven surgeries.
It was when I saw Matt come out of the operating room after her first surgery, his eyes red above the mask he quickly peeled off, the smile he valiantly tried to fake, the nod that signaled things had gone well, that I fell hard for him. Or I realized how much I’d cared, and prudently stored away, from the beginning. I let it rip after that.
And I remember thinking, with an inner gasp of panic, how horrible it would be if he were married to someone else. Just in time, I went nuts over my own husband. I began to invest, as he had, in the gestures of our marriage. It became more than Matt’s being “a good man.” Matt’s being “a solid man.”
He became my heart.
Our daughter is four now. We called her Pamela Lang, because Matt insisted we call her after me. The nuns at the orphanage hospital called her “Lang” as an endearment. In Vietnamese, it literally means “sweet potato.” They used it to describe our daughter’s nature, which was sunny despite the titanic challenges she faced. Now, she sings all day, and speaks English as if she’d grown up in Marin County. Rory would carry her around on a platter, and Lang would go for that. I’m certainly the oldest mother at the preschool—well, that’s not entirely true, and I don’t look as old as I really am. Oh, yeah, yeah, all is vanity, but it’s true! Still, I’m definitely the only one with a cane.
Pamela is my real name.
Of course, you never like your real name.
Julieanne is just the prettiest name I could think of. For the book. This book.
We never lived in Sheboygan, Wisconsin. I’ve never even been in Sheboygan, Wisconsin. But we lived somewhere in the Midwest, where there was a smallish city with pine trees. Gabe’s real name is Daniel. It suits him. He has the soul of a Daniel. We had to change all the names and places to protect the innocent, and as my Gabe (I’ll call him Gabe here, for the sake of avoiding confusion) would say, not to flatter the guilty. I won’t tell Caroline’s real name. Someday, you might see her on a stage, and the pain between us, which may have healed by then, is too private.
None of the changes to names and places is to suggest that any of this isn’t true. My father was a writer; my ex was a lawyer. There was that harrowing trip they took, which to this day I suspect I know of only in the edited version. It isn’t fact. But it’s true. All of it’s true. It’s possible, sometimes, and even necessary, to avoid the facts to tell the truth.
Cath is still my best friend. When Klaus died, and Liesel went to live in Europe, Cathy bought the old place. She’s still on her own, but her practice is thriving. She had another psychologist working for her. I tell her that her success is all thanks to me, having lent her an in-house puzzle of family dysfunction to play with. Abby Sun has a little sister. I go to see them at least once a year, and within my limits, we have a big-girl party: Stella and Rory and Abby and the baby, Lang, and I. Cath and I go to class, which Leah still teaches, and more often than not, I can still get my leg up on that barre and my head down on that leg. And though I can’t leap, or do an open pirouette anymore, I can still do a double that’s good enough for government work.
The poetry book was sort of just what the agent said it would be, a greeting card for women who were pissed off, and bought to give to each other. The novel, because of its odd juxtaposition of authors and origins, had a modest success. When it was published, Gabe and I were on TV, on a morning show you would recognize, with a nice man whose name is a household word. We had a ball, waving at the people from our home-town outside the glass windows. That night, we went to see Brian Stokes Mitchell in Man of La Mancha. I took my shot, and spent the next two days in bed.
That’s life.
I still have MS.
And Gabe still has learning disabilities.
He dropped out of college after the first semester in the achievement program. He was through. Kaput. Done. He felt as though they’d gone from treating him like pond scum to treating him as though he needed a seeing-eye dog. I got mad, and asked him what disgrace there would be in someone needing a seeing-eye dog. Or a walker, for example. He was contrite then. It was only that he was ashamed. After a year back home painting houses with Luke, living with my in-laws, he applied to journalism school at Columbia. That lasted one semester. Then he found this program in Boston for writers who have learning disabilities, a college within a college. It was pricey, but Matt encouraged him. Money doth have its privileges, and we hired a discreet full-time tutor, to supplement what the college provided. Gabe got along, and, with the help of a program that they normally use for little kids to organize the thought-hand process, he was soon flying along, putting down his ideas without burying the lead.
The following summer, Gabe got an internship at a newspaper in Connecticut. The second weekend he was there, after having moved into one room in the house of an old lady who had, Gabe said, either five or six golden retrievers, he drove up to Yale. He didn’t know what he’d encounter. Except for a few notes, he hadn’t heard from Tian since our wedding. My heart squeezed when I thought of what I was pretty sure he’d get for a greeting: Tian’s joyous hail-fellow-well-met-American-boy-I-once-liked. I didn’t hear from him the first day. I didn’t hear from him the second day.
The mother hen in me finally won out, and I called and left a message on his cell phone.
When he called back, that night, my first words were, “What happened, Gabe?”
And he said, “Everything.”
They’re still together. Tian will finish college in a year, and so will Gabe. She has eight hard years of med school before her, and I’ll be surprised if they make it. The intense purity of their love is dizzying to see. I think of a couple of kids whom I knew once, kids who couldn’t wait. Perhaps they can.
Stranger things have happened. Against longer odds. I know that from experience. I got lucky. Maybe they’ll get lucky. Gabe is the kind of guy I knew would fall utterly if he ever found the one. He found her when he was fourteen.
Myriad disconnections. A version of that phrase is what I called my book of so-called poetry for the pissed off. But it’s a mirror of my life, or a metaphor for it. I had a life as neatly trimmed out as one of my Katharine Hepburn shirts tucked into my ever-so-nattily pressed trousers. Then, bit by bit, the way the sheath that protects the nerves ruptures and flakes in the body of a person who has multiple sclerosis, that life began to detach, parts from the whole, daughter and husband spinning off and away, function and form giving
me chase, beyond my ability to catch up, until the whole was a collection, with parts in different places, no longer a tidy sum. And I thought, That’s it, my life, my children’s lives, would never add up again to more than a fraction of what had been.
But, slowly, bit by bit, more to the credit of Cathy and Gabe than to me, the parts again began to add up to something, then to something more. I’m not sure that the first life was in any sense a false life. It was not a failure, but it had a limited warranty. This is the one I have now, though, and I have to think it’s better. It has the bouquet of longevity.
Not every woman who has this bastard disease will hold on to as much as I’ve been able to hold on to. I’m surrounded by medicine—with Kelly, Matt’s daughter, in med school, with Tian, with my husband. There are many more than I who get dealt a harsher hand, and never draw a face card. That’s what I speak about now, when I do speeches, the need for services and research and the need for grit—and also in favor of doing what Jennet told me, so long ago, getting up and getting a life. I’m only a person, but I have a big mouth. Maybe, as Leo said, I once was the duchess of smug, and I deserved a comeuppance. But no one deserves this kind of comeuppance. And no one deserves this good turn of fortune. It’s all like Papa Steiner, bless his soul—he’s still doing great—told Matt that weekend at the blackjack table. You win, and someone else goes bust. Next time, it might be you.
Some nights, when I’ve had a frustrating day, a day of garbled words and knocked-over chairs, and a creamer that overflows the coffee cup while I watch my disembodied hand go right on pouring it, when I’ve sent Lang to her room because I deserved it, or had to miss Rory’s soccer game, I dream that I’m dancing. I dream the lights have come on, and I’m Odette, the swan princess. I fly onto that stage, and raise my arms, my ankle level with my forehead in grand battement. My fluttering leaps are effortlessness, in a way that they never really were in my waking life. My crossed hands, in the swan position, are poignancy in human form. I look out into the audience, and there is Leo, shaking his head in disgust when I can’t unfurl myself from my bowed pose, shrugging on his jacket, leaving the hall without looking back. I wake, and my hands are fluttering, but it’s because I tremor in the night, sometimes so much that I can’t sleep.
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