Today is full of unusual clouds—looping strokes of sky-cursive, grey wisps of cirrus near the horizon, and the low-level, ropelike billows whose underbellies cast back the evening sun. To a brain dry roasting in Palm Desert’s triple-digit, never-ending heat wave, it’s unbearable that the white streaks and whorls above are composed of water droplets and ice crystals.
My mind says, smoke.
My body says, every beautiful thing is on fire.
I’ve spent the last couple of hours reading One Flew Over the Cuckoo’s Nest, fidgeting, changing positions on the couch, on the floor, seeking out any and all possible openings of relief I might find. I couldn’t find any, not lying on my stomach under the air conditioner with a cold pack on my lower back, not with my back on the floor and my legs up the wall, or propped up in bed with a package of frozen corn on each of my knees.
But now it’s seven in the evening and Jonathan is carrying me on his warm back across the hissing blacktop of the road to one of the three pools in this gated community we now live in, an act that has become ritual without us really noticing.
He knows not to ask me to grip harder with my legs and ease up with my arms, and I try my best not to choke him as I cling.
He can feel my lean lower extremities shaking with the effort of trying just to stay in place around his middle. My left flip-flop falls to the grass, and his muscular body squats down in perfect form; I stay in place like a weighted vest. He slips the shoe onto my foot, but it takes a few tries before I can will my big toe to allow the piece of rubber on the sandal into its grasp.
We’ve been laughing about some thing or another, whole-body laughs that flood me with endorphins, make me believe for seconds at a time that I could live this way forever if I had to. As long as we can laugh like this.
What does it make him feel, this laughter? That he could live with me forever, just as I am, even if I never got better? That this, it turns out, is what love does—allows people to bend like saplings into mystical shapes.
Or maybe he’s just thinking about the right now. Men, I’ve read, can do this better than women can. Right now he loves the woman on his back, the water is waiting for us, the water is good. The tequila is a warm embrace from inside. Amen.
I keep looking over my shoulder, waiting for a camera crew to jump out of the manicured hedges and announce that the past three months have been an elaborate prank. I’ve been waiting for someone to tell me I’ve been punked by karma, or Jesus, or the devil, or the god of limbs.
The pain in my legs came suddenly in late March, not long after my 28th birthday. The pain brought weakness. In less than a few weeks, I went from hiking the knobby, moss-grown trails of the Redwood Preserve and doing whatever people do in hot-yoga classes to now barely having the strength to buy groceries on my own.
After a month went by and I still couldn’t walk more than a few steps at a time without exhaustion, someone close to me casually told Jonathan that he didn’t have to marry me. As in, he didn’t have to feel obligated just because we were engaged. He could wait and see. It was maybe a joke. It was said more than once. I wanted to laugh it off, I really did, especially since it was said right in front me. The difficult part is that I know it’s true—he has options. The able-bodied always do. And as of right now, I’m not in that club. I try to envision a future in which I will be able to laugh at the off-putting stuff people say when they don’t know what to say about invisible disabilities.
What I want most right now (besides for this shit-show to end) is to be like Randle McMurphy from Cuckoo’s Nest—I want to laugh at the things that hurt me. And luckily, all these little opportunities keep arising.
A few feet from the pool my right flip-flop drops to the grass. This is funny. The extreme heat, my quick decline into disability, the way gravity presses down on the things we pretend to own. Our bodies. The absurdity of limbs. How we ever thought we were in control of anything at all. How we ever believed all the things we thought.
What helps with all this absurdity is that we’ve taken to blending up sugary, icy, liquery drinks every evening at five ever since we got here. It feels like the Palm Desert thing to do. We’ve become believers in Happy Hour, something our grandparents made legendary with their plaid and Hawaiian shirts, their cocktail napkins, and classy barware. And it’s true, I have felt something like a retiree. I limp around, read paperback novels, ice my knees, take pills, call doctors, watch television, complain about wait times to receptionists at doctor’s offices, sit on the porch, get excited over Handicap parking spaces at Trader Joe’s, and now…Happy Hour.
The real retirees are not by the pool tonight. They do their swimming at 6 a.m. when I have just fallen into a light, tortured sleep. Sometimes parents bring their kids around this time to tire them out, but tonight it’s just us. We like it this way. Or maybe we have simply grown accustomed to being alone together. Between the years of 2010 and 2012, more notable things will happen than all the years leading up to this point in our respective lives, and coincidentally, we will have the least interaction with people, friends and family especially, that we have ever had or will have.
If we are lonely, we don’t know it.
Or, we’ve come to know loneliness in isolated, suspended moments:
In the ghostly white petals of the night-blooming cactus that lives near the porch.
How we didn’t plant it.
How we won’t be able to take it with us when we move.
How we will move and move and move again.
In the smells of disinfected hospital corridors, the dankness of parking structures,
and air-conditioned movie theatres.
In the empty swimming pool, the deeply pink bougainvillea leaves swirling in the middle
like paper boats.
And because as much as we feel like one person, we are not—so there are all kinds of moments of loneliness that belong to Jonathan that I will never know about. I write some of mine in a journal where I can keep them in front of me. Tonight, before I lie down, I will write: “Went to the pool again.” I will write: “Maybe I am getting better.”
I swim the length with just my arms. My legs trail behind me, and the passing water hurts my skin. I imagine my legs as gone, and for seconds at a time they are. I love breaststroke the best, love to feel my chest muscles burning, my throat burning, my jaws. Some invading force makes my skin and muscles and joints hurt at random times and for unpredictable durations and no pill can stop this. And so, dear reader, there is an impression of control from causing my own body some pain then ending it when I’m ready. Can you relate at all?
I go back and forth, back and forth, flipping to my back, then to my sides. What I’m doing is I’m swimming myself, meaning, I’m impelling my body forward. Before I was ill, my body swam me, it walked me, it compelled me to dance or kiss or run or eat or sleep with someone I knew was bad for me. The body was king; thought was often a delayed reaction to whatever choice the body made. Now the body is weak and must be told, must be carried forward by will.
(See how badly I want to feel like all is not lost? See how much the human animal clings to any shred of personal power? I don’t want to control anyone else, but oh, oh, oh—please let me able to control myself.)
Jonathan does a few laps in the regular forward crawl and then floats. He’s a terrific floater. I catch sight of his bare chest and legs and Roman nose out of the corner of my eye. I try not to worry that I’m not worth the trouble, or that the trouble will eventually grow to outweigh my worth. I try not to imagine my arms becoming as weak as my legs.
Then I get mad at myself for doubting my worth. Then I question if I’m even sick at all. I think of all the hiking and walking we’ve done, all of the problem solving that came from those long treks, that I surely must still know how to do it. I tell myself that when I get out of the pool, I will walk home without assistance.
Oh, god of unusual clouds. Oh, drowned bee. Oh, crispy pink leaves. Oh, cheap tequila. I command it. Amen.
In February of 2010, on my 27th birthday, we went on a hike to one of our favorite places in Humboldt—a big, flat rock that juts over the crashing waves of Trinidad State Beach. The skies in Humboldt are characteristically steel-grey and heavy as industrial doors, and on this day the sky did not disappoint. The waves at Trinidad are massive, violent, dangerous. They crash so loudly on the razor sharp crags that it’s difficult to hear each other without shouting. The water is freezing cold, the droplets of spray are as icy and smelly as fish scales. Wall-eyed crabs skitter, peck at carrion, wave their pincers at no one, tumble dumbly in the surf. Below is a battered tide pool that only the most naïve of young males attempt to reach. Whenever we went there we would find ourselves standing on the outer limit of the precipice, one of us always trying to brace the other from the perceived danger, then inching out just a bit farther, that feeling of risk swelling and pulsating and warming us from the inside like bottom-shelf whiskey.
We had known since we first became a couple a few years back that we would get married, but on this day he wanted to make his intentions clear. On the big, flat rock I loved so much, Jonathan got down on one knee and before asking the question, recited a poem he’d written. He had to shout it.
It probably started to rain right after I said yes and we giggled and said silly, irreverent things. It probably rained the rest of the day and into the next morning. Maybe it rained all week or for the rest of the time we lived in the redwoods. We drove home in the rain to our damp little duplex that shared a wall with the landlady’s apartment, and I probably baked a loaf of bread while Jonathan tapped on his electronic drum set or toiled over his schoolwork. Probably I had a rash on my chest and stomach. Probably my stomach was upset after eating the bread. (Memory issues, knee pain, gut issues, respiratory infections, persistent insomnia—I had been dutifully ignoring those kinds of things during my five-year slog passing classes at a handful of community colleges followed by another two years of scholarly mediocrity at my chosen state university.) Probably we watched a movie on our computer monitor because we didn’t own a T.V. yet and laughed at how our new puppy appeared to be watching the movie with us. Probably we played a board game at the water-damaged table we had dragged in from the street corner when we moved in. Probably the landlady banged on the wall when we laughed too loudly. And when we went to sleep on our Coleman air mattress that was set on the very old carpet, tiny mold spores probably floated into our mouths and noses, and we dreamed our separate dreams, and woke up tangled in each other, not lonely, not wanting, the air mattress beneath us completely deflated.
I lift myself out of the pool, which is to say that my strong self lifts my weak self out of the water. I sit on the edge for a moment, talking to my legs in my head. I kick them back and forth gently like I used to do as a child. Jonathan is still floating with his eyes closed. I think about McMurphy telling the Chief he can lift that monolithic hydrotherapy control panel. The Chief doesn’t believe he’s big and tall. He feels small inside. Then when he feels big, he acts big, and throws that control panel right through the goddamn window and walks out of that hellish asylum, saving himself.
It’s not that I can’t walk at all. It’s not as though I’m paralyzed. Sometimes I can walk an entire lap around the perimeter of our gated community, which I think is a quarter of a mile, maybe longer. But it’s how the walking feels. Even though I hardly move, my calves and knees perpetually ache and cramp as though I ran a dozen miles without warming up first. Or like I climbed a thousand sets of stairs. I can’t feel the ground with my feet. This is called peripheral neuropathy—I know because I looked it up. I also have something called dropfoot—if I bend and raise my leg just a few inches off the ground, my leg drops back down out of my control. My balance is terrible—ataxia. And I have restless leg syndrome, too. My legs jerk and twitch and sort of take themselves on a stroll when I lie down at night to sleep. And of course I don’t sleep. The sheets hurt my legs. The air from the fan hurts my legs. Ataxia, dropfoot, restless leg syndrome—my life has become a list of side effects that may be caused by a drug for erectile dysfunction.
All of it seems like bullshit.
Maybe it is bullshit. All in my head.
When you stand up from the concrete you will walk, and it will feel like it always felt. Go.
I try it out. The same strain, the same ache. I feel like the top half of me weighs three hundred pounds, and my legs are toothpicks. I slide back into the water before Jonathan opens his eyes.
I want to tell you how beautiful he looks as he floats in the center of the pool, how some of the magenta bougainvillea leaves have gathered in the V between his legs, what the light is doing to his skin, how he might be the center of some suburban mandala. I want to tell you about how we take turns holding each other in the water, how when it’s my turn to hold him I go until I’m trembling, wanting so much to be the nurturer. But such details are excessive and self-indulgent, and I’ve done so well—I’ve been told by my mostly male professors—at avoiding such pitfalls, even as a fledgling writer. So, just think of the person you love best, and I’ll let you shade in all the flecks of gold and violets that make up their irises, and imagine all the layers of darkness that would blossom and swell in their absence.
Tonight I write in my journal the names of the unusual clouds I keep seeing, more so now than ever before. They’ve always been there, but I’m finally noticing. Lenitcular altocumulus—the one that looks like a spaceship—and those damn ominous mammato-cumulus—the ones that meteorologists call “mamma” and according to my field guide “form under a thundercloud at the end of its life.”
Whenever the Lenticular altocumulus comes around, my mind thinks: Mothership. My body thinks: Take me to your leader—I’m an interesting specimen.
Ten days later and we are in Oregon for my last MFA residency. I barely make it through. During the graduation ceremony, there are bagpipes playing. They seem to me so unbearably loud that I worry my ear drums will burst. Something in my back feels as though it’s going to burst, too. I can’t avoid vividly imagining one of those aliens forming inside of me, one that’s confused about which way to exit. When I step (carefully, slowly) off the stage, someone ask me if I’m unhappy. You were grimacing the whole time…. Family wants to know what’s next, what’s next? What jobs have I applied for? When do I start my illustrious career as…a…whatever a person with an MFA in poetry becomes?
The insurance plan I bought through the university will end six months after my degree arrives in the mail. I won’t be able to get insured for a while due to pre-existing conditions. Then, I’ll be able to purchase insurance but no treatment for any of my pre-existing conditions will be covered.
In early August it becomes difficult to wash my hair, put on my make-up, keep my hands on the steering wheel. My arms are tired and weak as though they’ve been working really hard, as though they’ve been doing all the work. I cut my hair short so there’s less to manage. I’m all the time looking for less to manage, less to hold on to. My weight is the lowest it’s been since junior high. I still swim myself, just less frequently and without vigor, pausing by the steps for a few minutes when I get to each side. By September all I can do is float, and I feel as though I were born for it, that by process of elimination I’ve finally found the simplest, most natural way of being. I am as light as the droplets of water and ice that make up the clouds. I stare up at them and they stare down at me. I want them to try and figure me out, consult all the field guides. I want them to decide what kind of unusual cloud I am—that woman down there, floating in her own small sky.