The Breakdown Lane by Jacquelyn Mitchard
“Hundreds of thousands of people have multiple sclerosis,” my mother said. “And a lot of them don’t even know it for years. And a lot of them, you can’t tell they do from looking at them. But some totally lose their vision, or their ability to speak….”
“If hundreds of thousands of people have it, why doesn’t anyone know anything about it?”
My mom sighed. It was just the most beaten-up sigh. I felt like a whiny moron. “I’m sorry, Mama,” I said. I could see her eyes fill up.
“I’m the one who’s sorry. This junk. And your father.” Then she breathed in and set her shoulders, Gillis-style. “Look, honey, we’ll figure it out. And then, we’ll call Dad….”
If rage can be an accelerant, that was when mine for Leo went from zero to sixty in five. I thought, You lousy scumbag. She was putting up this “We’ll call Dad” front for me. My mom had to know that, in all the months since Leo had left, we hadn’t been able to reach him, with all the letters we’d sent—even to the post-office box in New York State he’d promised would always be “a permanent address” during his sabbatical. Not me, not Caroline, not Cathy. She had to know he had called precisely three times in three months, but that was it—once the week after he left, once on Christmas, once on Aury’s birthday. Well, at least that I knew of. Maybe he called my mother at night, when we were asleep, but no, she would have said something. Even before this medical thing, you could tell, she was worried all the time. She did things like you do when you’re my age, pick up the phone to make sure it’s working if you expect someone to call.
We drove up Pine Street, down the highway past the ABS sign and the high school, left into the subdivision kind of thing where we lived that they called the Gray Harbor neighborhood, even though nothing there was gray except one house and there was no harbor. My father had told me Gray was a person, the farmer who used to own the land. I didn’t figure she would say anything, though normally you can’t shut my mother up. And she didn’t say anything, until we were practically in the driveway. She stopped the car then, and said, “Baby, I don’t want you to worry. When we get hold of Dad, he’ll come right home. And I’m strong and healthy, and I’ll…I’ll do what they tell me, even if it means drugs. Not right now, but…” She reached out and took my hand, and I let her. “I’m not going to be a vegetable, Gabe.”
“It’s okay, Mom,” I said. I knew it wasn’t.
Caro was at Mallory’s. I called her and told her not to ask questions, to get her butt home. Mom drove over and got Aury from the sitter, this friend of hers from work called Stella. She made some noodles with olive oil and a salad with cucumbers and arugula.
We all ate in total silence.
Then my mother said, “Aurora, remember when Mommy had to lie down all the time?”
“And didn’t wash the hair?” Aury asked.
“Yes.”
“Mama was smelly,” Aury said.
“That’s because I was sick,” Mom said. “But Aunt Cathy took me to the doctor, and the doctor is going to make me better.”
“Good job, Mommy,” Aury said. I kept feeling like I wanted to bawl, because that was what we said to Aury, when she learned one of her colors. “You can eat like a big girl, my mommy.”
“But if I get sick again, Auntie Cathy and Nana and Grandpa will help us, and Daddy will come home soon.” To tell the truth, after three months, Aury seemed to have about forgotten Leo. But she grinned and ran over and hugged my mother.
“Good mommy,” she said. “Good job.”
“Gay,” Aury said then. She couldn’t say “Gabe.” To Luke’s delight, she called me “Gay” back then. “Daddy coming home.”
“Yep, shortie. Daddy will come home and it will be all better.”
“Will, Gabe, please, will you put her to bed?” I had English homework, but the deadness in her voice scared me, so I decided to put it off. Mrs. Kimball, my so-called LD “support” teacher would expect no less of me, anyhow.
In her bedroom, I pulled Aury’s little soccer shirt up over her head and zipped her into her foot pajamas with the one toe poking out. We had to cut her footie pajamas so one toe stuck out on each foot. She had fits if we didn’t. I made her brush her teeth with her Princess Jasmine toothbrush. We read one of those horrifying Richard Scarry books with fifty-two pigs and foxes and snakes all working dump trucks and directing traffic and talking in little talk bubbles. Just reading one of those books was enough to exhaust a person, but Aury wanted me to “jump her” on the bed. Caro and I both did this: We’d say, “Bouncie, bouncie, bouncie, boom!” and then lay her down. Aury would have gone on doing this for about six weeks straight if we let her. I stopped with the fifth bouncie. Then, with this huge fucking lump in my throat, I kissed her sweaty little head.
I went banging back downstairs. I didn’t want to surprise my mother.
My mother and Caroline were sitting at the kitchen table. I knew she’d just had the same talking-to from my mother about what multiple sclerosis was, how it affected different people different ways. Caroline looked bored. She finally asked, “Can I call Justine now?” And my mother nodded wearily.
“Use the cell phone,” she said. “I need the house phone.”
I got the wall phone and untaped the strip of paper with my father’s cell number on it from the corkboard beside it. “Do you want me to leave?” I asked her.
“No,” she told me. “Sit down.”
She dialed the number.
She listened.
Then, she handed the phone to me.
I dialed the number. “This is message MC thirty-two. You have reached a number that is no longer in service or has been disconnected,” said a recorded voice.
“Maybe he didn’t pay the bill,” I said to her.
“I paid the bill, Gabe,” she told me.
“Then, maybe he’s out of the area where he can get calls, like down in one of his canyons,” I suggested.
“You know he isn’t,” my mother said.
I sat there.
I so didn’t want to be hearing this.
“You know he doesn’t want us to reach him,” my mother said. “Okay. Okay. Maybe Cathy’s right, and he never wanted us to reach him at all. If that’s true, I can do this. But I’m going to wait, Gabe. I’m going to wait to hear because whatever else I know, I know Leo Steiner. I’ve known Leo all my adult life, and he would never, ever, ever break trust with me. No matter how confused or selfish or weak he is right now. He’s a good man. He’s a good man. Your father is…a…good…man.” Tears were pouring down her face, but she didn’t appear to be crying. Her breath was regular and slow. She sat completely motionless, her hands up and open.
I got up. “Will you be okay if I go to the Witts’ and see Luke?”
“It’s dark, Gabe,” she said. “I don’t want you riding your bike without a light.”
“I’ll walk.”
My mother sighed. “Gabe, take the car,” she said. “I know you do anyway. It’s only a few blocks.”
That slammed me a good one. I didn’t even have my temps yet. I had no idea how she knew. I looked at her to see if her hands were shaking. But they were not. She was simply looking at the wall, as if the wall were a mirror.
Edward Hopper is my favorite artist. That’s not true. He’s actually the only artist whose paintings I ever really looked at. My grandparents had one in their apartment in New York. I like them because they look real, like photographs, but actually, they look more than real. They look like Hopper could paint the way people felt, as if he saw them from inside instead of outside. Even when he painted houses, he made them look as though he could tell what the houses were thinking.
When I glanced back at my mother, her face so pale and still under the glare of the kitchen light, her arms laid side by side on the wooden table, her hair tucked behind one ear, she looked like one of those Edward Hopper paintings. She looked like she was not in our kitchen in Sheboygan but at some lonely diner where all she could afford was coffee, and
THIRTEEN
Psalm 55
EXCESS BAGGAGE
By J. A. Gillis
The Sheboygan News-Clarion
Dear J.,
I’ve had it. I’m sick of being told, “Sherry, you’re the strong one.” My father just had a heart attack, and thank goodness, he’s going to be fine. But he’s going to need someone to drive him to rehab for months, which my mother can’t do because, although she’s fine, too, she’s about to have cataract surgery. Meanwhile, my husband and I are helping our son look for colleges, and I have a demanding job. My brother and sister, one older and one younger, only live across the border. In Indiana. Not an hour away. But do you think they can do anything? No, all my brother can do is whine about his divorce and all my sister can do is whine about her arthritis, which isn’t even that bad. Why do people take advantage of you because you’ve managed to keep your health and make a normal life for yourself? If my husband wasn’t being so great about this, I’d be hitting the bottle!
Overburdened in Oleander
Dear Overburdened,
Okay, poof! You’re not the strong one anymore. You’re weak. You’re depressed. You have arthritis and your marriage is failing. Your parents don’t have physical problems they need help with. They’re already dead. Your son isn’t searching for the right college. He’s in rehab. He killed another kid in a drunk-driving incident. He drinks because you do.
Do you feel better now? The reason people depend on you, while it might be a drag, may be because you HAVE managed to stay healthy and have a normal life. That’s rare. Sure, you have more on your plate than you want. Join the club. For starters, try being grateful for it.
J.
Telling the kids about my diagnosis might have been the hardest thing I ever had to do.
But getting it was a close second.
This is how it went.
Cathy and I sat across from each other in the doctor’s office. We took turns spinning in the physician’s chair. We looked into the cabinets. I got up and went out to the washroom. Cathy got up and looked at my chart in its plastic holder bin outside the door. “I’m so jealous,” she said. “How much weight have you lost?”
Neither of us spoke of what was so obvious it was like another person in the room. This was taking too long. Reading an MRI may take days for a doctor to get around to doing, but once finished, it does not take…now, forty-seven minutes to report to the patient summoned to hear the results. “What the hell did he do, go golf a few holes?” Cathy asked irritably, glancing at her watch for what I estimated to be the fifteenth time. And as if at that cue, Dr. Billington breezed into the room, whipped off his glasses, and sat down at his desk, slapping the films of my neck and head down between us.
“Well, basically, Missus Gillis, I’m here to confirm what you probably already know. I rarely have a patient come through the door these days who hasn’t already been on the Internet to find out what’s going on when she’s symptomatic, and by the time she gets to me, she has a list of questions as long as her arm. All of which I’m ready to answer as best I can. The most important question, the one people usually ask first, is, what is going to be the course of my disease? And that’s the one question I’m not able—”
“Wait,” Cathy said, “it’s not that we don’t know how to use the Internet. But we don’t know what disease process you’re talking about. We don’t know if Julie has had a stroke, or if there’s a benign tumor—”
“I’m sorry. I assumed you were referred here because the suspicion of multiple sclerosis was strong, and given the eruption of symptoms you’ve described over the past weeks, combined with the lesions that are so plain in these photos—”
“I have multiple sclerosis?” I asked him. “I have multiple sclerosis? I’m going to be a cripple? I’ll be in a wheelchair? I have a two-year-old. Don’t only…isn’t this a disease that older people get? I…wait a moment. The first doctor, my own physician, said that there was a good likelihood that this was attacks…”
“Ataxia, due to a virus or bacteriological infection in the inner ear, or some other site. Well, while it’s rare, it is possible for a viral infection, depending on the location, to cause problems with balance and coordination, even auditory hallucinations…and, no, Missus Gillis, you’re actually on the high end of the age for receiving a diagnosis.”
“Depression! Or chronic fatigue syndrome. My doctor said it was possible, that it was visually…virtually undetectable! Or food poisoning. Mercury poisoning. Lead poisoning…”
“Missus Gillis, all those things could potentially be worse for you! There was a time when MS was an exclusionary diagnosis, but now there are ways to be certain, and I am virtually certain you’ve probably had the disease for years. Wait! Yes. You’ve had some restoration. What’s great about the brain is its powers of rerouting, calling on other areas to perform functions when a given area is attacked. It’s like a detour, like police rerouting the cars after an accident. Usually a person is between twenty and forty at the onset. But you do not have an infection. You have a condition that gradually destroys the myelin coating of the nerves that branch—”
“I know what MS is!” I said angrily. “And that’s another reason why…I think I need a second opinion. Given that I’m…fine now. I’m simply fine. I went to dance class last week, and I was a little stiff, but…if I had this, I’d still be hobbling and weaving around like a drunk.”
“Not necessarily. What we hope we have here is a remission that can last a long time. People sometimes come all the way back after a first manifestation, and sometimes, not always, but sometimes, they stay that way. For years. But I’ve seen it happen. Now, what you said right there. That’s a very good thing,” Dr. Billington said. “You’re not having problems with your gait anymore. That means we can hope that this is a milder form of MS—”
“If that’s what I have!”
“It’s probably what we call RR, or relapsing-remitting,” the doctor went on. “That means, it’s possible after the kind of month you’ve had, to go for weeks or even months or…or more without another bout of symptoms. And then, those could be mild, or the same as you’ve already experienced, or they could be more troubling. However, we can’t be sure of any of that. You’ve said there are some lingering effects?”
Numbness, I thought. “A very little numbness,” I said. “My hand and leg are still numb, on the outer edge, I mean. And I have a little trouble with my balance…and somehow with making my thoughts, this is silly, but, making my thoughts do the things I want them to do. Commanding my words or my body.”
“And how long has this cognitive impairment been present?” He seemed interested, unsurprised.
“The numbness?” I thought of my leg, in ballet class, creeping across the floor, slowly unfurling. “The control problem? It, well, I’ve had trouble with controlling…my movements….”
“I mean thinking. Talking. For some time? For weeks?”
Cathy said, “For almost two years. That I’ve seen. At least. The physical and mental stuff. ”
Dr. Billington said, “I…see.”
“I don’t have cognitive impairment!” I shouted, beginning to cry and furious that I was. “I have a little trouble remembering. Premenopause stuff. I have a little learning disability. I always have had, and so does—”
“It’s possible. But what you described to me sounds like an artifact of the disease….”
“It isn’t! I am fine!”
“Well. You might say that, if this condition has been present for some time with so little real manifestation, that’s all to the good,” Dr. Billing-ton conceded with a sigh. “What we’re going to need to do is watch this very closely. Clearly, you had a serious episode very recently. Had there beena…death in the family? A shock? I ask you not to be specific or to pry, but because stress tends to exacerbate—
“Yes,” Cathy said.
“But I think I need another physician, another test, not that I question…” I began.
“I encourage that, Missus Gillis. However, these pictures don’t tell lies,” said Dr. Billington. “These are images of the spinal cord of a patient with classic lesions that are present in MS.”
Cathy would later explain to me the rest of what Dr. Billington told us. She took detailed notes on the course of treatment he would recommend “for his own wife.” He suggested a schedule of appointments. I would need to learn to give myself injections. The injections represented hope. Some drugs you gave yourself in shot form—the only one I recognized was Interferon, which I knew to be a chemo drug for cancer—were shown to slow the progress of the disease, despite some side effects that Dr. Billing-ton said were “not negligible.” These were pills, too. It was Cathy who discussed the possibility of antidepressant medication, asked about support groups in the area, told the doctor that she heard that muscle relaxants sometimes helped both with sleep and spastic muscle behavior. It was Cathy who’d asked all those questions about dance and yoga, about the ability to use a keyboard, about the effects on me of Sheboygan’s brutally hot and humid summers.
I asked about nothing.
My mind was shouting, but no sound came from my lips.
Dr. Billington handed me a sheaf of pamphlets and a two-pocket folder stuffed with green, gold, and pink sheets of phone numbers and frequently asked questions, all of which I dropped. “I just dropped those because I’m flustered,” I said, “not because I’m spastic. I dropped them because it’s hard to take news like this in a matter-of-fact way.”
The doctor, genuinely kindly, said, “It’s hard to give it. It takes a long time to grieve what really feels like a betrayal, particularly when you’re as healthy—”