“I am healthy!” I shouted.
“Missus Gillis,” Dr. Billington told me softly.
“What’s the worst-case scenario?” I asked.
“Let’s not get on that horse, Missus Gillis,” he said.
“No, what? I have a right.”
“The most malign form of MS is fast and steadily progressive and leads to total incapacitation and respiratory failure and death over a period of many years. We usually see that aggressive a disease with men, though women get MS more than two to one, probably because they have a different hormone structure. In other words, the best thing about women, their ability to create life and so on…”
“Ah, brood mares,” I said.
“You know what I mean,” said the doctor.
“Yeah, I do,” I admitted.
“Well, for some reason research hasn’t quite grasped, because gender research into this disease is only a few years along, what makes women get MS in greater numbers than men. But the forms they get usually are milder. The best-case scenario is that you never get any worse than this, that if you do have symptoms they’re few and far between.”
“Will I be wheelchair bound?”
“Not necessarily.”
“Will I die young? I mean, young for dying? I know I’m not young, now.”
“No. That would be unexpected. We just don’t know, see, Missus Gillis. You just can’t tell how this is going to go until it goes, so anything I said to you would be a…well, it could be a lie. It’s a very unpredictable thing. Many people who have multiple sclerosis walk normally; some have a little trouble; some walk with a cane. Only very rarely do you see someone who has to have help toileting—”
“Help toileting? You mean diapers? You mean bladder…problems? I would rather die. I would rather die.”
“No, you wouldn’t, Jules,” Cathy said seriously.
“Cathy, I’m the most modest, I’m the most sort of prissy—”
“I know all that. But you wouldn’t rather die. Don’t get over the top. What about the kids? What about me? Even Leo?”
“I’ve just learned I have a disease that is going to wreck my life.”
“Aren’t you listening, Julie? He just said that wasn’t necessarily true. You might never have another episode like you did. You might have ten little ones. No one said you aren’t going to be able to walk and work and dance…”
“I want to ask another thing,” I told the doctor urgently. “I have readers whose relatives have had MS, who use herbal remedies, even one who used bee stings. I remember now. I’m inclined to try diet and exercise and some of those things first, and move on to these heavy drugs if I have to….”
“You can, Missus Gillis,” Dr. Billington, who suddenly looked as old as Gabe, said, removing his glasses and rubbing his eyes. “But then, you’re not…at least my colleagues think you’re just going to feel better while the disease goes on getting worse inside you. In fact, there are those who think the serious kind of MS—not the fatal kind, but what we call secondary progressive, the kind that starts with relapses but gets worse dramatically each time—is really just the result of putting off the inevitable, the drugs that work. Some people think the way to go is hit the thing hard with the best drugs we have before it gets bad, because we can’t really see what’s going on inside your nervous system. Given that you’re…what, almost forty-five now, I’m hopeful that you can live out an ordinary life span…perhaps with some impairment of function as time goes by, but perhaps not that anyone except you would know about. But I do think that using the drugs that we know can work, not for everyone, but that do work, despite the discomfort, is the way to go. Right out of the gate. Fight back. See? There may be no need for mechanical support…on balance, given how shocking this must be on first hearing, we can hope you’ll someday be able to think of yourself as one of the lucky ones.”
My mind’s mouth was wide open, shouting, Lucky! Luckyluckylucky and LeoLeoLeoLeoLeo. I tried to smile. I tried to be polite. Cathy helped me to my feet.
FOURTEEN
Ruth
EXCESS BAGGAGE
By J. A. Gillis
The Sheboygan News-Clarion
Dear J.,
I know that Dr. Kevorkian is in prison, but there are those who need him. I have myasthenia gravis. Right now, I get around pretty well. But I know that, eventually, I’ll be so weak that one of my sons will have to take care of me, or I’ll be placed in a nursing home, using up all the savings I have in the world. I want to end my life while I’m still healthy and enjoying life. My sons have young families and live in the Northwest. They don’t even know I’m ill, thank goodness. They’re wonderful young men, with wives and dear little children. I’m the last thing they need. Don’t get me wrong. I’m not indulging in self-pity. I just want to find a civilized way to end this before I become a rock around the neck of my children. I also don’t want to spend all I’ve saved on nursing-home care. I’ve heard that there are books about how terminally ill people can end their lives with dignity.
Lost in Lancaster
Dear Lost,
While I completely sympathize with your fear of becoming disabled, don’t expect me to agree with your suicide plans. People in hospice care end their lives with dignity, when the time comes. If you can still read, laugh, have a good meal, and walk, your time hasn’t come. If your sons are so wonderful, how is it that you haven’t chosen to share with them that you have a serious illness? Would you want them to take their own lives rather than ask you for help? And what about your grandchildren? You’re a better asset to them than a laptop or a Vespa. Get down off the cross, lady. Your sons will step up to the plate, and either they’ll help; or they’ll find good people who will. Fess up to your family. That’s what Robert Frost meant about home. When you have to go there, they have to take you in.
J.
Dear J.,
I’m in love with a man who is 10 years younger than I am. While we both agree we can have children through adoption or surrogacy if necessary, he confessed the other night that he was worried about my looks, afraid that, in the future, as I age, the comments of others who see us together would distress me. He suggested I have plastic surgery now, while I am still in my 40s. While I can afford it, I don’t know whether I want to have surgery. I’m a pretty woman, in good shape. I wonder why he is more worried about this than I am. I am a widow, and he has never married.
Baffled in Beaver Dam
Dear Baffled,
Here’s a three-word prescription for you: Lose the loser. When your honey says he’s worried about others’ feelings about the disparity in your ages, he’s really talking about himself. While I’m certain he looks just like Mel Gibson, try asking him if he’ll have liposuction when he gets love handles a few years hence. There are plenty of nonsurgical alternatives for skin improvement. If you want one, do it. But for your comfort, not his. Or ditch Mr. Sensitivity and move to Italy, where mature women are considered a sensual prize. Tell him what he really wants is serving lunch now at Hooters.
Best luck,
J.
Though I wasn’t entirely confident of the new, edgy Julie—the one who emerged from melding Gabe’s and Cathy’s style with my own sensibilities—a few weeks later, I got a call.
It was the one I was dreading.
My editor, Steve Cathcart, sounded urgent. I was sure it meant that I was finished.
I avoided calling him back, for in relative terms, at least, things had been going so damned well! Some minor burning sensations in my thigh, a few wobbles, and some ominous twinges in the knees, but mostly, I was right as rain. Moreover, Caro and I were in the middle of a period of bizarre closeness, fragile as a sugar egg. We took ballet together, then went “out for coffee,” trying on shoes with matching leather purses we could never afford. She confided in me that she’d never gone to second base, though Justine had. I confided in her that I was grateful for that, and would pay her five hundred bucks if she held off “doing it” until she
was out of high school.
“Five hundred,” she murmured. “That’s not bad.”
“That’s almost a round-trip ticket to Paris, in the off season,” I said.
“For not doing everything, Mom?” she’d asked me. “Or anything?”
I thought back to my insatiable longing for my now quite-possibly long-lost husband. “Not doing it doesn’t mean not doing anything, Caro. French-kiss. Feel free to…feel. But nothing that could lead to a big disease or a baby.”
“I’ll think it over,” she said seriously. “But wouldn’t you feel kind of queer if you got out of high school and you were still a virgin?”
What a world, I thought. “It still happens all the time, Little,” I told her.
While lost in his love for Tian, Gabe, relieved no longer to be the paterfamilias, reveled in his restoration to kid-dom. I spent hours peeping over the bright little shelf of my computer screen, watching Gabe watch Tian watching television. Everything fascinated her, from the most bizarre and disturbing reality shows to reruns of Grease. Every so often, he would reach out and stroke her river of black hair, as if it were a relic; and she would absently pat his hand, too riveted to the takedown in progress on Cops to respond in kind. Tian had bought Gabe temporary chops within the school hierarchy, since she was an undeniable babe. Only rarely could Gabe tear himself away from her. But he did. When Grandpa Steiner came up from Florida, thankfully while I was still feeling well enough that he suspected nothing of the illness I couldn’t bear to confide in him, he took Gabe and Luke on a nutty winter golf outing, buying each of the boys a brandy. Luke had begun hanging around at our house even on weeknights. Braving what I suspected would be their pity and gossip about Leo, I went to play bunko with Luke’s mother, Peg. When she murmured something about Leo’s being gone so long, I told her that he was retracing the steps of Lewis and Clark.
The silence from Leo was a dirge that had played so long we no longer heard it, except in the silence of the night. I heard it in the solitary silence of my bed. But refunded health was such a gift I couldn’t afford to spend too much of it on grief. Leo would come back or he wouldn’t. I would see him and love him. Or I wouldn’t. My goal was to leave Leo out of my recovery, if you will, as much as possible. I had to do what men did routinely, stuff his rejection into an old coat pocket of the mind. If I did that, I thought I could handle the children and me. MS plus me plus one foot in the economic grave and the other balancing on a Ping-Pong ball minus Leo equaled me. It was better if I concentrated only on the children, the finances, and myself.
Later in the week, Steve left a second message.
I couldn’t avoid calling him back.
“Gillis!” he said heartily, and cut to the chase, “Gillis, I need a meeting with you. Does three work?”
I had a women’s club speech at one, so at least I’d be dressed in something other than what I was then wearing—an old pair of Leo’s boxers and a long-sleeved crew shirt leftover from college. As I held the phone, I noticed right away that my left hand was jerking like a fish on a line. I knew stress could not “bring on” a bad spell, only (maybe, because with MS, it’s all maybe) exacerbate one. Still, I carefully formed my answer, in my mind, like little word magnets on a fridge—I’d say fine and make sure it didn’t come out as fire—and bounced back, “Fine with me. Are you about to replace me with a comic strip, Steve?”
“Yep,” my boss answered, “can’t fool you. No, all joking aside, I have to see you in here. If not today, then…?”
“Today’ll work,” I told him.
But privately, I thought that Steve Cathcart’s desire to see me—in person—could mean many things, but they were all bad. I tried to collate them in my mind, which was an undertaking now, not something I could do at the same time as I assembled the ingredients for, say, soup. Okay, I told myself. They’ve decided once and for all to cut costs and run a syndicated columnist. They’ve got an up-and-comer who can reel in the twenty-somethings. They were thinking of a His and Hers kind of thing—the ways in which a guy and a woman might answer the same question. However, I could come out of this still with my 22K a year if I could craft a niche, maybe, with all my recent speeches, a society sort of thing, perhaps reviews, or theater benefits and flower shows…. “But I can’t always count on being able to walk around the orchid shows,” I said, not quite realizing I was still having a phone conversation.
“What?” Steve bleated.
“Oh, one of the kids just came in.” It’s nine in the morning, dear God, he thinks I’m insane, I reminded myself. Even Aury was in school. “I’m sorry. Sure. I’ll come by right after I do a speech thing I have….”
“That works.”
We hung up.
I lowered myself slowly to the cool tile of the bathroom floor and coached myself in the isometrics of denial.
The therapist Cathy had taken me to see—twice so far—had spoken about the merits of enforced denial “in situations such as this.” (I hadn’t known there were situations such as my own, so I thought I had a good jump on denial.) Still, one of the first things Jennet said was, “Never assume things can’t get worse.” A novel opener, I thought. At least, I wouldn’t have to put up with happy horseshit about new awakenings and the universe closing the door on your foot while opening the window. Jennet was actually urging me to accept my lot, and then try to live as though I didn’t, betting that the window wouldn’t fall on my head. “Denial is really essential, Julie. People with MS, well nobody really, can live in a protracted state of crisis,” said Jennet, a large, comfortable woman, the only person over the age of thirty I could think of who still wore Earth shoes. She was given to scarves she evidently wore over her coat to work and then forgot to drape around her collar on the way home, so that her office had come to resemble a sort of desert tent, a salon of many colors. She also had textural objects, such as a phallic brass tulip, a flat-sided carved granite head, palm-sized, that represented a man and a woman eye to eye, a glass egg fitted together along its deceptively shattered center, the edges of the crack smooth though they looked sharp enough to cut. Beguiling things that begged the hand. I recognized them from those in Cathy’s office. Even adults needed toys to fondle when faced with mortal memories, terrible revelations, an anguishing dilemma. There was a moment of relief that Gabe or Caro was not hunched in an opposite corner of the sofa, dismissing my plea to give up the ecstasy of Ecstasy.
For someone in a jam who doesn’t know whether her ultimate destination will be, in metaphor, a tropical island or federal prison—Jennet’s words—the alternatives to denial were a steady drip of self-pity or the constant unease of a guard dog on a short chain. Either would lead to emotional paralysis, for the victim. And her family. Neither was acceptable, particularly now that I was in what I supposed was “remission.” (I’ve since learned that a “remission” may be many things, not only a time of feeling normal but a time when nothing overtly horrid is happening.) At that time, before Christmas, I had near-combustible energy and an almost supernatural appreciation of the world’s elements. It was as if everything was sharply outlined in thin permanent marker. I dawdled over the darling perfection of tasks I’d once tried to rush through—to get back to my books and my music. They had become a sensual pleasure. I was being here now, as Leo would have said. Folding towels in threes. Matching all sixty of Aury’s socks. Enraptured, seeing my steady hands, competent and safe, as they cut and cubed potatoes, and tossed in parsley and milk. Opening yeast. Yeast smelling like home. Dropping it into my twenty-year-old (and still wonderful) bread machine and smelling the bread beginning to brown. Each of these things was like finding a favorite earring you’d thought had been lost. I remembered recovering from measles as a child—that tremulous sense of tentative renewal. I had always appreciated my life; I had never seen it as miraculous. Now I did. Pay no attention to those brain plaque patterns behind the curtain! Nor to all those navy blue and gray blazers reproaching me from the other closet.
We’d
even had a good Christmas. Dinner with Connie and Cath, blowout presents for the kids—a motorized Harley for Aury, a real stereo for Gabe, and a used but still terrific laptop for Caro. Connie had knit a sweater for every member of my family, including Leo.
I know now that those periods were a waking dream. I know now that inevitably, one day, I would open my eyes and find someone had sneaked kryptonite under my pillow. The draining away of the precious days of strength drained away hope and relief at first. But as function returned, so did hope. I didn’t know this then, and even if I had, I would still have been determined to relish those good days that followed my big relapse, if only to spite Leo and MS. Jennet was right. Cath said she was, and so she was.
The only thing wrong with Jennet was her stubborn insistence on facing facts. I liked the truth but, as the poet said, liked it slant, a spoonful at a time.
“You don’t have a terminal diagnosis,” she said, during our first visit, “so you may never have another bad day, or you may have ten bad days during one summer and then no more for ten years, and then a big incident….”
“My concern is that I need to keep functioning evenly, now more than ever,” I told her, rolling the cool, smooth marble egg between my palms.
“Now, more than ever? Would there have been a better time?” Jennet asked. She leaned forward.
“Well, yes, when my marriage…when my husband…before he left…”
The Breakdown Lane Page 15