The Mercy of his Grip
Monday morning. My mother sits at her laptop in the kitchen, her tiny frame swimming in a shaggy pink bathrobe, staring at the screen while sipping on a cup of coffee.
“Helene, where’s my underwear?” yells my father from the bedroom.
A little louder: “Where’s my underwear?”
“Did you put your hearing aid in?”
“What did you do with it?” more loudly.
“God damn it. Why did I even buy those things if you’re not going to bother putting them in.”
Now full-fledged tears.
Staring at her: “Did you do the whites yet? The ones that have been sitting by the washing machine for two weeks?”
A teary shake of the head.
“Have you eaten yet?”
Another head shake. “I…N-no.”
He goes to make her a bowl of cereal, serves her, says “Oh boy, let’s go see what else the D.E. has fucked up downstairs,” then heads to the basement, presumably to check on the laundry, while my mother grabs a napkin and begins dabbing off her tears.
Later that morning, she’ll spend another couple of hours clicking around on the internet and sending a few emails, followed by a nap, followed by more puttering around on the internet, and maybe another nap, and might eventually make it down to the basement to start a load of laundry.
Meanwhile, my father heads to his computer to get to work (copyediting from home), goes out at 5 p.m. for a run and to shop for groceries, comes home, makes dinner, cleans the living room, pays some bills, then collapses in front of the T.V. to relax, next to my mother, who has been sitting on the couch for a couple of hours. And that’s a typical day in my parents’ household.
* * *
When asked by people he’s just getting to know why he shoulders such a large domestic burden, in addition to holding a full time job, my father typically turns to humor: “Well, my Domestic Engineer, a.k.a. the D.E., a.k.a. my wife, just hasn’t been handling business as well as she used to. I ask her to put the tea kettle on, she leaves it ‘til the smoke alarm starts going off. So I end up having to pick up a lot of slack…She has multiple sclerosis, you know.”
It’s true that these days, the D.E., a.k.a. my mother, has trouble getting around, due to the progression of M.S., a crippling neurodegenerative disease. To amuse himself, my father has started composing a comedy routine for her. The first lines go like this:
“How are you?” the interviewer asks.
“Well, I can’t walk, talk, see, hear, or think, but other than that I’m doing just fine.” (Badum-shhhhhhh.)
Which is only a little hyperbolic. At her moderate-to-advanced stage of secondary progressive M.S., my mother “walks” around the house like a debilitated Tarzan. Able to support herself for only a couple of seconds, and only on three legs (two of her own, plus a cane), she hobbles from perch to perch—here clutching a doorpost, there leaning on the edge of a table—to get around.
She also has trouble with hearing, balance, and fine motor control, and has constant double vision. The physical limitations alone would be tough for any couple to handle, but the cognitive effects of her condition are even more challenging. Her short term memory is compromised, and she struggles with retrieving and enunciating words, so while trying to articulate the simplest of thoughts (“Could you please pick up some more milk at the grocery store?” “I read a really fascinating article in the Times this morning”) she stalls, stumbles, and mispronounces. Even simple conversations are often thwarted.
But that’s not all. The more peculiar forms of torture M.S. inflicts upon its victims is one of the surest forms of proof that, if there’s a devil, he’s cleverer than God. One such example is the pseudobulbar affect, an erosion of the brain’s ability to modulate laughing and crying and to prevent laughter from turning into crying and vice versa. So my mother cries, and laughs, and cries at the drop of a hat. Tears, in general, function as a kind of emotional imposition: They demand an immediate response from others present (If you doubt this, just try sitting in a room with a person who’s crying and suppressing the urge to somehow react). But in my mother’s case, tears come readily whether or not she’d like to attract attention. Realizing this, my father tries his best to ignore most of her outbursts and to bottle up his feelings of resentment, but it’s a constant struggle, and he doesn’t always succeed.
Consider the following few snippets of interaction:
“Could you get me a seltzer from the fridge?” my father asks my mother after collapsing on the couch after a long day. “It should be in there if the D.E. did her job right.”
“I have to go check the fridge…but I don’t think I did.”
She hobbles over to the kitchen and when she appears in the living room again with only a cup of cold water in hand, he pulls off his belt and starts rattling the buckle, chanting “The D.E. is gonna get it, oh yes she is, just you wait.” He lightly whips the belt on the couch a couple of times, chuckling loudly to himself. This is a new routine he’s been very into recently. He wouldn’t dream of ever touching her, and my mother knows this so well that she starts laughing and only tears up a little bit, and tells him that she doesn’t find it very funny.
“It's crackers to slip a rozzer the dropsy in snide” is an old line of nonsense from the Mad Magazine of his youth that my father still enjoys saying aloud.
While serving my mother a plate of fruit and cheese and crackers for lunch one day recently, he decides to trot out the line again. “That’s so old,” says my mother.
“Tell me what the line is then.”
Hearing her fail, “If it’s so old, why can’t you say it back?”
She lets out a moan and her eyes well up with tears.
“There you go! There she goes again! You want to have a good weep right now? Yippee!” Then, deliberately ignoring the obvious reason for her tears, he continues, “Do you not like what I served you for lunch? I’m sorry, I know my luncheons are a little imperfect…Oh boy, let’s all sit here and watch mom cry. That’s always a kick in the head!”
The conversation, such as it was, only degenerated from there.
Getting ready to go out for dinner with another couple, my mother starts having trouble moving her right leg. It’s always very weak but, at the moment, she says, she can’t move it at all.
She yells to my father from the bedroom, where she’d gone to change, and is suddenly trapped.
“You always do this when we’re about to go anywhere,” he says.
“No I don’t,” she replies. “I need help.”
“You’ve been getting around fine all day. You’re just doing this to try to get out of going.”
“No I’m not.”
He lets her struggle for a few minutes, she starts crying, he finally comes over to help and as soon as he gets to her, she collapses onto the floor.
“I guess you were just waiting for me to get here to fall, huh?”
“I…No, no I wasn’t. Please help me get up.”
“You never want to get out of the house anyway. Maybe I should just leave you here.”
With his help, she finally makes it out of the bedroom. But, as often happens, she insists she would rather stay home. He ends up going out alone.
* * *
When I’ve confronted my father about the verbal abuse, the conversation always goes the same way: “It’s humor, she knows it,” he tells me.
“Does she really, though?” I ask.
“Of course she does.”
“I really don’t know about that. And most of the time it’s not even funny.”
“I’m kidding with her, she should know that by now, and besides, I can’t just keep smiling all the time dealing with her every day, it’s unbearable; I’ve got to do something to cope.”
And suddenly I don’t know what to say anymore.
* * *
It wasn’t always this way. My mother was diagnosed when she was 28, after a series of minor seizures and visual disturbances led her into a neurologist’s office to get an MRI. It happened around the time my parents got engaged—I’m not sure whether it was before or after, but certainly after their relationship had gotten serious. Occasionally my father will muse aloud on the subject of their marriage.
“My God, did I not have a clue what I was getting myself into. I had my doubts. I even hesitated walking down the aisle. But we were young and hopeful then… And what was I going to do, abandon her?”
He didn’t then, and he never has. It would be difficult to identify the particular features of my father’s character that have allowed him to keep giving so much of himself for so long, but a crucial element must be that he has another love: his music. For years, he has dreamed of finding success as a composer and lyricist of musical theater, and so, for decades he’s worked steadily on devising and revising new songs. To keep up the work, he’s avoided ever taking on a very demanding day job and, instead, has kept work that pays the bills and gives him time to keep writing. Success is hard to come by in theater, and he hasn’t yet had a big break, but he still thinks it could happen so he keeps trying.
“Some People” is a piece from the musical Gypsy sung by the character Rose, the original stage mother, who can’t stand the idea of giving up on her dream of orchestrating her daughter’s theatrical success. “Anybody that stays home is dead. If I die it won't be from sitting; it’ll be from fighting to get up and get out!” Rose exclaims just before breaking out into song. She’s a tragic figure, but my father draws inspiration from her stubborn tenacity, and he never goes more than a few months without quoting from the lyric’s final verse: “Some people sit on their butts/ Got the dream, yeah but not the guts/ That's living for some people/ For some hum-drum people I suppose / Well, they can stay and rot—but not Rose!”
He once told me he’s lucky he has such simple desires: He doesn’t much yearn for vacations, a big house—or even a normal adult relationship—he just wants to take care of his family and to keep striving for musical fame, or die trying. His dreams, then, sustain him.
* * *
Illustration by John Loxterkamp
Now that my father has stayed with my mother for this long, I can’t imagine he’ll ever abandon her, but they both worry about the future.
My mother has never been one to voice her internal struggles, even when she could speak more easily, but her pain comes out in cries and expressions of exasperation (“This sucks!”) at her stumbles, fumbles, and falls.
My father confides in my brother and me when his anxieties build up. “Your mother is such a struggle,” he says to me one day when we’re together in his car. “I can barely handle her as it is but she slowly just gets worse. You can’t see it happening day to day, but six months, a year goes by, her leg gets weaker, she gets more tired—it’s another turn of the screw. Soon I’m afraid I’m gonna have to start helping her into the shower. What am I going to do with her.”
And, as on so many occasions, I lack an adequate response.
The truth is, nobody knows how he, she (and yes, my brother and I, too) will take on the future. For now, my parents continue to muddle through. Occasionally, they still even enjoy each other. There’s little that remains in their relationship that you’d call romantic in any traditional sense, but whatever romance once existed between them has given way to an array of queerer forms of intimacy.
Like the way he squeezes her hand tightly after administering each of her thrice-weekly injections of medication to distract her from the way it burns her skin.
And the hugs he surprises her with while she’s standing in the living room that cause her to lose her balance and leave her whole body at the mercy of his grip. She screams dramatically when he does it but often smiles at the same time.
And the way she listens to his new songs as many times as it takes her to fully understand them, and then tells him, slowly, what she thinks of the lyrics (she still believes in him, and he still values her feedback).
And a bizarre bedtime ritual: A couple of nights a week, after lying down to sleep, he yells out for her. She makes her way to the bedroom, and he orders her to “sit down and get to work on my feet.” He has bad calluses around his big toes—hardened lumps of skin he’s developed from years of daily jogging—and abrasion feels good and prevents them from becoming painful. Knowing the routine, my mother turns the lights down and sits down at the foot of the bed. They wish each other good night, and she begins slowly picking at his feet as he drifts off to sleep.