You crossed the line, my friend Ann tells me. I’m visiting her in California. We’ve borrowed a trailer perched on a small mountain so that we can have a quiet place to write. Now I’m trying to explain why I can’t focus, why my nerves are so jangly. Why I can only take short, shallow breaths.
I try to explain to her what happened: Everything around you is chaos, he was shouting, his voice sharp as a claw. Can’t you understand how hard this is for me? Can’t you cooperate just a little?
Sam is my lover. He is handsome in a blue-collar, ex-altar-boy sort of way. Nose slightly crooked from a childhood break. Teasing green eyes. A dimple when he’s thinking. In his early-thirties his hair turned prematurely gray, but that only made him more attractive. There was something unexpected—sexy—about it. I have loved him half my life, give or take. He has been sick for a third of that half, give or take.
It happened so gradually I didn’t notice it at first. I suppose that in small ways he was becoming different, less agile, less sure of himself, but I didn’t see it. What I did notice was his temper, the sudden flashes of clear cold rage.
We were in Chattanooga the first time I registered his unsteadiness. It was hard to miss, even for someone as airy and distracted as me. Sam was standing in the middle of an arched stone bridge, not moving. This was at Rock City, the tourist attraction. See the seven states! Fairyland Caverns! Mother Goose Village! Come on, I said. There’re gnomes to see. I can’t move, he said. I’m afraid I’m going to fall. His arms were extended, as if he was walking a balance beam. There was an unmistakable look of panic on his face. Still, I thought he might be faking, acting like a baby because I’d dragged him to a kitschy overpriced tourist trap.
It was three years before the doctors gave him a non-diagnosis: You have symptoms like multiple sclerosis they told him.
The course of MS is unpredictable, but the kind Sam might have, primary progressive, is characterized by a gradual but steady progression of disability without any obvious remissions. Symptoms include: balance issues, foot drop, bowel/bladder issues, sexual dysfunction, memory loss, fatigue, spastic gait, slurred speech, blurred vision.
We stare at the ceiling. After a while he says, I miss our sex.
Some time ago, I saw, on a suburban lawn, a whole bunch of snakes that had just hatched. They wriggled and writhed through the grass. Then, out of nowhere, dozens of crows swooped down to prey on the snakes. Memories can be like that sometimes: dark things dropping from the sky.
That night, before he began to shout about chaos, everything around me being chaos, Sam had told me that it was going to rain. That I shouldn’t take my walk. He’d even switched to the weather channel to show me the approaching storm on radar. I didn’t listen. Instead, I’d gotten soaked to the skin. Shook the rain off, inside our front door, like a wet dog. Tracked water up the stairs. Left dripping clothes draped over the dryer.
One of the things that makes him crazy is the way I leave things lying around, especially books. Some I’m reading, some I want to read, some I’ve already read. Christ, he says, everywhere I go I’m tripping over books. Can’t you put anything away?
Andre Dubus is an author whose books I leave lying around. I’m not Catholic, but I’m drawn to the way he writes about faith and forks in the road. What if your daughter was involved in a hit-and-run? Would you help her cover it up? What if your son’s killer was about to get off scot free? Would you take matters into your own hands? What what what, he asks over and over in his work, are we humans capable of?
People afflicted with MS are angry. Well, who wouldn’t be? But it turns out they might have more reason than we have, until now, thought. According to a study published in the European Journal of Neurology, people with MS feel more than twice as much withheld anger as the general population. These elevated anger levels are unrelated to the severity of the patients’ MS, suggesting that the cause is neurological. The researchers concluded that the process that causes the root symptoms of MS also disrupts the pathways that control how people deal with withheld anger.
When did he grow old, lose his athlete’s body, develop a gait that matches his hair?
A year before our trip to Chattanooga, he felt an electric twitch in his left leg. This may have been the first symptom. Or, his doctors say, not.
In California, I told Ann what I’d done. My words were like tarnished coins; I pushed them through the slot. The clatter as they landed startled me. It was hard to think straight. And so hard not to lie.
One night, while helping two strangers whose car had broken down, Andre Dubus was hit by a car. He lost one leg above the knee and the use of the other. He became confined to a wheelchair. A little more than a year after the accident, his wife left him. I remember my reaction when I read this. What a bitch, I thought. Leaving a man like that under such circumstances.
Each year, during the first days of golf season, when lawnmowers rev up and the smell of burning charcoal wafts through suburban streets, Sam lies on the couch and refuses to speak. Andre Dubus, who was also an active man, a man’s man, called this the “agony of spring.”
Sam used to walk like he was springloaded. His heels rarely touched the ground. Once, in bed, I read him “Harrison Bergeron,” the Vonnegut story about the boy who defied the laws of gravity, who leaped like a deer on the moon, who was shot down with a double-barreled ten-gauge shotgun.
We were both using canes when we spent a week in Port Townsend. I’d torn the meniscus in my left knee while doing a little amateur roofing. Sam had finally accepted the need for a three-pronged cane. Look at us, I said to him. What a pair we are. Not really a pair, he said. You can be fixed.
No matter how bad my day is, his is worse.
Sometimes I don’t mind when he sulks. His speech problems—caused by dysfunction in the nervous pathways affecting the muscles of the tongue and mouth, voicebox and respiratory system—are especially pronounced when he is tired or upset. We’ll talk about it in the morning, I tell him, and escape to another room to watch television.
Well, I guess that’s gone now, Sam will say about tying his shoes, changing a light bulb, getting a dish out of the cupboard.
Ever-changing symptoms cause MS patients to feel a crippling loss of control. The question is, how to handle such feelings? On the Internet I stumble across an essay, written by a nurse, acknowledging that the old healthcare metaphor of “fighting,” of “waging war” and “doing battle with an invisible invader,” is not appropriate for chronic diseases. Because of course, the patient loses eventually. She suggests that a chronic patient find his or her own metaphor. For example, Jackson Pollack’s “Shimmering Substance.” At first, she says, the painting’s splatters and smudges seem like chaos, but then, if one surrenders to it, one begins to discern beauty.
The last thing Sam played competitively was pool. He threw himself into it with the usual gusto. Subscribed to magazines, studied the pros, analyzed shots and strategy. Practiced, practiced, practiced. The team he organized was called DUWACHUCANDU.
For the first year or more he refused to use a walker. Instead, he clutched people’s elbows, used their bodies for balance. Some people were good at matching his pace, making him feel stable. I wasn’t. You would make a terrible nurse, he said. Some people have a knack for helping. You don’t.
This is so surreal, his sister says to me. We are watching Sam get out of the car. He places his hands under his thigh and lifts his leg up and out. Turns his body. Lifts the other leg out. His foot scrapes over the metal threshold, gets stuck. I tense, wanting to reach over and give his foot a yank. He groans, pushing. Nothing. Shit, his sister says. She looks over at me sympathetically. You must feel like this all the time.
On bad days we call it a disease. On good days it is his condition.
He was standing in the bathroom and shouting. Everything around you is chaos! Total chaos! I can’t stand it! The unfairness of his outburst was stunning. I had draped my dripping clothes over the dryer, then closed the louvered doors that separated the bathroom from the laundry area. Why had he even looked behind the doors? I’m trying, I shouted back at him. I’m trying so hard.
The word chaos is generally used to mean great unpredictability and confusion.
In truth, I didn’t go to California to visit or to write. I fled.
In ancient Greece, the word chaos originally referred to the state of the universe before the cosmos was formed. Something more than nothing, it was a restless condition of nonbeing. Ovid, in Metamorphoses, describes chaos as a “lifeless lump” filled with “jarring seeds.”
Sometimes Sam says he is broken. Or, wistfully: If only I was whole. Why are you still here? he’ll ask suddenly, as if he’s just noticed I’m beside him. You know you have to go. You didn’t sign up for life with a cripple. With a non-human.
When he falls, it takes strength and focus to get him upright. Only he knows which limb to place where, how to turn furniture into simple tools. I’m not good at this. Tell me what to do, I’ll say. Get a gun and shoot me, he’ll reply.
Do you believe in God? I ask him. Sure, he says. That bastard.
He falls getting up in the middle of the night to pee. We struggle, for over an hour, to get him off the floor. We fail. He wets himself, then starts to laugh. You know what they say about accidents, he says. The worst ones happen closest to home. Don’t, I say. Don’t act like this is a buddy-cop movie.
Once, shortly after receiving communion, Andre Dubus encountered a man outside his church. The man, probably homeless, raised his right arm and middle finger and yelled, Fuck God. “On that morning under a blue November sky,” Dubus wrote, “it was beautiful to see and hear such belief: Fuck God.”
For a while, Sam attends a support group for men with MS. This makes him even angrier. It turns out everyone in the group but him has the relapsing-remitting form of MS. They can still have good days, he says. How is talking with them any different than talking with you?
Even I grow tired of hearing stories about people who have risen, gracefully, to the occasion. I begin to distrust their veracity. Something about the narrative is off. (Memory? Proximity?) For example, many of the people Sam interacts with throughout the day believe that he is rising, gracefully, to the occasion.
He’s not. I wish you would take this out on someone who’s better equipped to handle it, I tell him. Like who? he asks. Like God, I suggest. I don’t know what to tell you, he says. We hurt the ones we love. Uh huh, I say. Well, stop it. A few days later he tells me he made his physical therapist cry. Good, I say.
Oddly, the divorce rate for people with MS is about the same as the general population. Apparently the stress of staying is counterbalanced by the potential guilt of leaving.
My flight to California was delayed, and I was in the airport bathroom. I hadn’t slept in several nights. When I rose from the toilet seat, the whoosh of the automatic flush gave me a start. I opened the stall door and nodded to a man at the urinals. The sinks didn’t have handles and it took me a moment to remember that they were automatic too. What are you doing? the man asked. I shot him a look that said, What do you think I’m doing? Lady, he said, this is the men’s room. Are you blind?
Bladder and bowel issues are common symptoms of MS. Sam doesn’t want any help with this. We have agreed, without talking about it, that I do not see the soiled shorts that he has rinsed and draped over the bathtub to dry.
Elevated anger levels in the MS household can lead to abuse. Often it is verbal, sometimes physical. Dr. Deborah Miller of the Cleveland Clinic’s Mellen Center for MS has studied the problem, although she doesn’t have data concerning whether the amount of abuse in families living with MS is greater, less or the same as in the general population. “No one knows,” she says. But it happens. It happens often enough that, on the Multiple Sclerosis Society’s website, preventing abuse is one of five menu choices under the topic Relationships. (The others are disclosure, care partners, intimacy, and parenting.)
My friends are worried. Judy says call. Anytime. I call. What’re you doing? I ask in code. Come on over, she says.
After Andre Dubus’s accident he wrote a number of essays about his ordeal. They are brutally honest, filled with the kind of disclosures that make me want to look away from the page. At the same time, I am filled with gratitude, so thankful for a man of faith who does not easily toss around the word overcome, for a man with the courage to write of weakness, depression, heartbreak and humiliation. His description of the impact of a multi-week bout of diarrhea on his failing marriage is the kind of thing I’m talking about. “It remains suspended in memory,” he writes, “as the ordeal that broke us, or broke part of us anyway and made laughter more difficult.”
That night, after Sam found my wet clothes, I followed him into the bedroom. And I hit him. He fell backwards onto the bed and I hit him again.
I left the bedroom and pulled my suitcase out of the closet. Then I sat on the stairs, too tired to pack. If you leave again, Sam said, it will be the last time.
I fled to California, but I didn’t leave. There’s a difference.
Judy and I are shopping. We come across a table of tee-shirts, the kind with cute animal pictures and clever sayings. One of them has toads jumping in all directions and a caption that reads “Toadal Chaos.” I buy it in an XXL. I guess I think someday it might be funny.
“The Colonel’s Wife” is a lovely, delicate story, one of Andre Dubus’s last. In it, a retired Marine colonel breaks both of his legs when a horse falls on him. He is confined to a wheelchair and a bed on the first floor of his house. His doctors tell him he will never be able to manage stairs or walk without pain again. Throughout all of this, his wife Lydia lovingly takes care of him. “He knew Lydia did not mind wiping him, she was cheerful and told him to stop feeling humiliated because his legs were broken and he had to shit. But his stench and filth, and the intimacy of her hands and voice, slapped his soul with a wet cloth.” The colonel encourages Lydia to resume her old routine of spending the mornings outside, walking. But while she is gone he is afraid, wondering how he can save himself in the event of a fire. He notices, too, that the house is becoming more hers than his, now that he is confined. Then one day, the expression on her face when she comes home tells him she is having an affair. He confronts her and she says that it’s true, but it just ended. They talk. Over the years, neither of them has been entirely faithful. He had, after all, been gone for long stretches of time. They both admit to lapses and have the first honest conversation of their marriage … “and laughter came to them as suddenly as weeping had. It took their breath, it drew tears from them, it shook his body and hurt his bones, and he held Lydia and laughed.”
I understand the impulse to rewrite history. Once, Sam and I went to hear my cousin play sax. He’s very good. World class even, but hasn’t yet had a lucky break. It’s still bars and college campuses. Three-hundred-plus nights on the road. The time I’m talking about, we were at a local bar. My cousin was playing well. We hooted and whistled and pumped our fists in the air. It felt good to support, with our whole hearts, someone who was plugging away at something so difficult. We drank a few beers, then shared a few more, and laughed. And then we danced, both of us between the bars of his walker. This happened some time before our night of chaos, but I keep having to stop myself from making it the last paragraph of this story.
I am in California with Ann. We are sitting in a trailer, perched on the side of a small mountain, and I confess. I tell her about hitting Sam. I tell her that I hit him more than once. I tell her that I bit the skin over his cheekbone and it peeled back to reveal a small bloody triangle, then I ran to the bathroom for a cloth to staunch the wound. After that, I got out my suitcase but I couldn’t fill it. I tell her I don’t know what to do anymore or how long I can do it. I tell her all of this while, outside, a pack of coyotes yip and howl. I could leave them out, but they were there.
©Stephanie Harrison, first published in Gulf Coast Review