When Father Andrew said the Last Rites over both of us, Nancy tried to stop him.
“My husband,” she pleaded, “only my husband Jake is dying. Leave Jonas alone.”
But he would not be stopped. We all know. Why pretend? God cannot be fooled. I joked: “I guess now I’m good to go, too.” Charlotte turned away. Nancy looked down. No-one laughed. The laughter has gone from this family, we who laughed so frequently together. We who did everything together.
Here beside him, my life swells, objecting to fate, protesting to God. I want Charlotte with a new awareness, a fierce and tender need for my wife I haven’t felt for a long time. Doctor has said, “Now, Jonas, we must not disturb Jake.” What does he mean “we”? I prefer to be the one who decides not to disturb him. That I alone can make that choice. That I still have choices.
Nancy strokes Jake’s burning forehead with a cold cloth. When I am chilled, she warms a throw and carefully lays it across me, tucking it in, to ensure that only my body is covered. It has been good that she has been a nurse. “Home care,” Doctor said, “will be best. There are few comparable beds. Certainly not in hospital.” Nancy knows how to comfort, adjust things, check things, clean things. But curing is not in her bag of tricks.
Until this week I took him to the bathroom, sharing my strength. Now he just lies there in his adult-size diapers, looking at the ceiling from inside his yellow skin. The gray shadows under his eyes are changing to green hollows, dark and bruised. He wheezes so that I can hardly sleep. We’ve always slept in harmony, but no more. It’s hard enough knowing with a surety that he’s going to die, but when he wheezes like that I want to run away. And now, I wear adult size diapers, “in case.”
I want to bury my face in Charlotte’s breasts and hide from the stink and sound and sight of Jake dying. Sometimes she just stands and looks at us and quietly cries. Nancy stands to the side and touches her arm, trying to help, with the knowing in her eyes. I think the knowing should be worse for her, but she grieves for Charlotte as if Charlotte couldn’t do it for herself. . . wasn’t permitted to do. As if it would be unseemly.
We don’t talk much, Charlotte and I. We seem to rehearse for when it happens, the time when I have nothing to say in return. They don’t know that I hear everything in the sitting room down the hall where they’ve made a little altar. I hear them praying for Jake. I hear the scratch of every match lighting another candle in his name. I hear the rustle of my wife’s clothes when she rises to come down the hall. I hear the clunk of her shoes and know she’ll soon be in her special chair, by our special bed, quiet tears running, running down. Kissing my hand, the one closest to her.
Sometimes when Nancy can’t help herself she looks at me with barefaced hate. Then she leaves the room, goes to pray God forgive her. She tries not to look at me, as if in the catching of each other’s eyes the death sentence would be confirmed.
It’s hard, when the only privacy we ever had was inside our skulls, to accept that there now is none at all. None. We are on display in ways we’ve never been. And yet, we who could always read each other’s thoughts are now truly alone. I have no access to Jake’s mind. I don’t know what he thinks, or if he even does.
When we were small children, and people backed away from us, I thought it was because we were different, frightening. But I came to understand it might be me. My push, my drive, my “if you don’t like the way I am, you don’t have to be around me” attitude. The attitude I couldn’t enforce without embarrassing Jake, causing him to stammer.
It’s hell to be too much. Mamma said I was always “bursting at the seams.” Sometimes when I was excited in the telling of a tale, Papa would hold my hands, and say “Go ahead Jonas, talk.” It was a family joke that Jonas couldn’t talk without using his hands. To hold them still rendered me helplessly dumb, the family laughing. I slowly learned to hold back. Control. Control. Control. Discipline. What else could I do?
For as long as I can remember, Jake has called me “Captain,” with his wry smile yielding to my stronger personality. I believed he was comfortable with the way he was. I believed he was fine because of the sacrifices I’d made. I believed. I thought. What an ego. A few years ago he confessed that he had envied my boldness, my lack of concern for what others thought of me. That when I slept he’d sometimes imitate me, make speeches, practice hand gestures.
He said when I was “on” he felt a rush, a surge of second-hand energy that sometimes exhausted, sometimes elated him. At those times, he resented the difference, felt I was mentally dragging him around, even though we stepped as one, no matter the gait we chose in the moment. What a twist. I was jealous of Jake’s calm. So intent in my effort to hold back that I didn’t guess he sometimes admired what he thought of as my freedom. Always going along, calling me “Captain,” with rueful, resigned, amused, love. And I was absorbed with suppressing what he envied and admired.
When he sleeps (He can’t fool me, I know when he sleeps.) I relieve myself, which brings me no shame (We’ve both done that often enough, sometimes in unison, as boys will do). But if I call for Doctor and plead that he cut the bridge through, then I feel shame. Doctor says, “No, Jonas, then you will both die. Wait.” I don’t know for what I am asked to wait. Either they know how, or they don’t. We are so bound as one that they are afraid to try. So, as one we stay.
The sliver of sky between the shade and window frame, tells me it’s morning. (Another accommodation: light hurts Jake’s eyes.) I stretch and tense my once powerful thighs, feel them growing weak and useless. I’ve created a daily routine, but still atrophy creeps in, where a lifetime of prideful strutting sags and retreats helplessly before it.
The blood beats between us uninterrupted, but several parts of us are now failing, worn from the task of defending us both. The sickness lives in Jake, and kills us. I dare not give voice to the new fury threatening to overwhelm me . . . having shared every known thing, I do not know how to accept this bitter unknown thing with any sort of grace. I feel guilt for the anger, and I am angry that I feel guilt.
But I have the right to my rage! Jake has a port in his side for liquid food while I am reduced to drinking a substitute purported to taste of chocolate, strawberry, mocha, or vanilla. The sweet chemicals cling after the drink is gone, tasting like the smell of the science tutor’s caravan when we were young: the frog dissected. My mouth cries for the salt, tart, bitter; the rough, smooth, spongy or crisp resistance of food against my tongue and teeth. I long to savor, chew, swallow: but the balance of that process upsets the parts we share. Acceptance is hard to come by.
Sometimes he rouses, agitated, and Doctor feels compelled to calm him. The injection sneaks over to my side. My spirit and body rebel. “I am not sick! I don’t want to sleep!” But it’s necessary for Jake, and against my will, I dream. The Fat Lady leers at us with her hooded little eyes, asking again and again how we “do it.” She is a mound of melting, greasy flesh, ballooning, smothering us. The main tent is alive with flame. The center pole weaves, collapsing. People scream. Samson takes hold of the stakes and wrenches them free, holding the heavy canvas high on his great arms while we stagger out, with bits of burning fat lady clinging, where she dripped on us during her melting. I support Jake with my strength. “Captain’s got you, Buddy, it’s okay. It’s okay.” Even in my dreams.
I dream of Charlotte, who weeps and prays at a makeshift altar down the hall. I dream myself erect, like a boy, and Doctor is concerned that my “physical manifestation” is disturbing Jake. The anger returns, again. Then I am drowning in shame. And sorrow. Sorrow for Nancy. Sorrow for Charlotte. Self-pity. Sorrow for Jake. I’m glad Mamma and Papa are gone, do not have to endure this. For the first time I am startled to realize that they always knew this time would come. But they died hoping something would still be learned that could let us escape.
Here then, comes Doctor for his daily check. Stimulant? Or sedative? Keep up the pulse? Lower the tension? Watch the blood pressure. I swing like a flyer between the up and the down, with no net below. Will I jump and jerk like Margo’s marionettes, or do I dream today, Doctor?
Stimulant. Thoughts swarm my mind and dash out again with such speed, there is no holding them. My eyes hold open and how frantically my heart thumps! I want to leap up and stride, just once alone, by the orange-striped trains, inhale the lion’s heavy musk, watch the children laughing at Little Will, tease him until his angry face belches clouds of vile cigar smoke. Run away from him backwards, daring him to catch up on his muted little limbs. Dance! I want to dance. OH, GOD!
There is so much I want to do! How does it feel to walk alone? How would it feel if Charlotte lay to the left of me, the soft skin of her lips against my back? Just once? Instead of …the way she always, always has, always the same. Charlotte. My love.The other half of my half-life. Jake-Nancy. Jonas-Charlotte. Jake-Jonas. My loves, my only life. My whole life.
I never wanted anything more than we had. I never wanted anything more than was possible. Now I wonder how those things might feel. Now I suffer remorse, and shame, and rage, and fear and . . . Jake stirs. He turns slowly, smiles at me with his eyes of all one color. His cracked lips move and he says, “Hello, Jonas.” He licks his lips with his swollen tongue.
“Wh. .wh. . .where are we, Captain?” stammering, like when we were children. Quick, I must find the bell, the nurse-caller thing. Pull it to me, press it, quick. Someone come! He’s better, he said, “Hello, Jonas.” He smiled!
The liquid that drips with every pulse beat has stopped. It hangs there, mid-way to the bend of his arm. Jake shudders, and sighs deeply. He smiles again as his eyes close, seeming more content than he has ever been. His tight parchment skin does not distort the almost joyful glow of his smile. But why does the liquid hang motionless in the tube? I smell his feces, a violent explosion of scent. He does not move. He smiles and stinks. His body is still. I touch the bridge of flesh that is us. The heavy thumping of my heart keeps time with the slowing pulse.
I can hear them scurrying, rushing because they heard the bell. Somewhere in an unfamiliar part of me an alien pain begins, and bounces from side to side, echoing, multiplying.
It doesn’t hurt as much as I expected, but breathing now comes very hard.
They’re through the door, and must be at the bed, but my eyes have gone shut, and I cannot will them to open. I’m sure I’m saying: “We’re good to go. It’s okay, Buddy. Go ahead. You lead. But wait. . . Captain’s coming!” Wait. There was something important to tell them. Yes. Jake spoke. He smiled. I don’t think I said it. But it does feel, and for their sake, I pray it’s true, that I am also smiling.