You are flat on your back under a glaring light. The bed is hard. It hurts. You don’t move because it doesn’t occur to you to do so, it’s so far beyond you. Each part of you that registers – reports in, so to speak – registers through pain. You body is mapped as a topography of pain. No face or distinguishing characteristics. You are a ground-colored shape dotted with points of glaring, popping pain. Where your head aches on the stone-stab mattress, where the gravel of the sheet is under your arms, where it rasps all along the tube that snakes down your throat, to an unidentifiable pressure on your front, low down.
Your back. Oh. Your back is a barely contained thorn patch in a mad stabber’s arsenal.
You’re not alone. There are voices, professional ones. But no one is talking to you.
There is a nurse above you, meeting your eyes. Her head blocks the light. “You’re awake,” she says. “You’re in the recovery room.”
You make a sound. It sounds dreadful. The first sound Frankenstein made on his slab. The thought of the monster brings back your past, all there was before this light, this slab, this pain. And the face in your reunion with memory itself is: Gene Wilder in Young Frankenstein.
You are barely awake. There is no thinking, as thinking usually is, the turning over, the handling of ideas, even random ones, getting to the bottom of the shallowest, most fleeting mental doohickey. None of that. No wondering.
Pressure in your middle, low, is taking over. The pressure inside builds and builds, and it is so oddly painful, dully relentless yet pointed and sticking into some deep part of you, forcing you to think about what it is. Mostly it feels like you desperately need to pee but there is no trying to hold it in. You want to let it out and you can’t.
“We had a very hard time waking you up,” the nurse says. “It’s good to see you.”
You make another sound, just as dreadful, but trying to make this one conversational.
The nurse nods. “We had to give you something to get you to wake up. It makes you feel parts of your body you don’t normally. I know it hurts more than we said it would.”
You breathe out, “Pee.”
“We’ve got a catheter in you. You can probably feel it in there. Let me see how you’re doing.” She disappears and the light is back. You are able to squint.
“You’re doing great. We’ve got output.” The nurse moves the lamp to your relief.
The pressure is going away. But it is if the room is tilting sideways, and you make a sound, a panicked one this time. The pain in your back is hitting. Slamming. From shoulder blades to waist, a long sizzling rod beating you to a pulp from the inside out. Not that it makes you move.
You understand later your body can’t move at this point because it’s still full of anesthesia that it couldn’t clear itself of. They almost couldn’t get you conscious at all so they gave you a drug that heightens every sensation – odd, new ones like feeling the tip of the catheter poking your bladder, and your freshly fused vertebrae.
Someone you can’t see says something soothing about waiting just a minute. You’re still not thinking much so you don’t quibble about how long it actually takes.
The moment the pain stops is the only moment. You close your eyes, a long flush of warmth runs all down you, and you fall asleep and wake back up in the hallway to see ceiling tiles rush by and your parents hurrying beside the rolling bed. The bed stops. Your mother and father smile at you but they look very, very worried and you try to grin with your mouth reassuringly.
The night after the fusion surgery your spine is a burning chain of metal links at the slightest movement. A bright bar of light over your head comes and goes but mostly it is a cycle of Demerol and pass-out sleep.
You have your perfect passivity broken only twice when you can feel the dose wearing off. A blood-seam image appears in your mind, red beads showing through the incision, daring you to feel the cut, the screws in the bones, and all the tiny holes where you were laced with surgeon’s thread.
You can go so far as to make a sound like a whinny. But then they put the Demerol into the IV and then the Seconal, and the blood-seam is stanched as sleep settles in around you on all sides, a pack of big, big dogs, loyalty expressed as solid mass, bulk that keeps you from moving. And when you feel that you must move, the nurses move you into new positions. They know how and you don’t – you can’t – and they pack rolls of blankets around you so you can’t budge, which you smile at by dawn, you had thought the blankets were dogs.
On the first day after surgery, you explore just how immobile you are. It’s like what they had described would happen and yet not. They hadn’t explained that your body would be gone. Not tired. Gone. Separate from whatever the rest of you is. Still shut down from the six hours of anesthesia and the complications you’d had in waking up from it. This isn’t the drowsy weight of sleep-laden arms and legs, familiar feelings in familiar limbs that respond to familiar thoughts, “Stretch,” and “Roll over.” You can’t stretch or roll over even if you want to.
It is a task and a surprise to lick your lips again, for your tongue to budge the Vaseline that is smeared thickly on them. This is followed by a long consideration of the light, a gauzy morning white, that does nothing to warm the room’s gray-beige furnishings. You seek patterns in the speckled ceiling acoustic tiles and find the profile of a hook-nosed woman and Dumbo. You have no book and it doesn’t bother you; you couldn’t hold the copy of Edith Hamilton’s Mythology you’d brought to the hospital even if you’d wanted to read it. Instead of being bored, you fall asleep, waking soon after when two nurses come in to take your vitals and move you. Lying on your left side, you eye your right hand arranged on its own pillow in front of your face. The hand looks tired, like it has collapsed. It has…how many?…tubes attached, plus a gauze-covered board of some kind. You can’t lift that hand. Or the other one, wherever it is. No no no. That would touch off the fiery chains rattling. Your legs and all that other stuff – well, god knows. It’s all still there under someone else’s supervision.
They tell you there are IV lines coming out of both hands, and arterial lines from wrist and groin. On the morning of the second day, one of the arterials has to be changed, and you see a fountain of blood shoot up in the air because the doctor doesn’t pack it down fast enough. The arterial lines, you find out, are far different from the IVs going into your veins. Those are simple needle-sticks. You can watch the needle going in without distress. But reinserting the arterial into its place where your torso meets your right leg causes a deep wave of pain you don’t expect. You have to make yourself lie limply and breathe through your mouth. It is a terrible ache nonetheless.
The afternoon of the second day, they want you to walk. Sort of. Not really. But more than other fusion patients do in 1979. The ones who don’t have muscular dystrophy are still being kept in bed, in body casts, for at least six months. Getting you up on your feet within 36 hours had been the dominating concern of your surgery. Your rapid loss of muscle use – think “use it or lose it” on fast forward – presented a whole new twist on the fusion. You might all too easily lose any ability to walk, which you do fairly well at this age, if slowly.
Your doctors had hit on the idea of installing you in a burn-bed, a hospital bed between what looked like eight-foot chrome wheels. The bed can move a patient without being touched – an important feature for someone with burn wounds. In your case, it can rotate you into a walking position without straining your back, and prevent your walking muscles from atrophying completely. You’d lose ground, no doubt about it, but not to the point of no return. In muscle world, that means muscles that cannot break gravity.
Before your mother arrives, the nurse gently pulls off the covers over your legs (after carefully draping light blankets over the rest of you) and explains she’s putting additional pressure stockings on you because they are going to tilt you up. You don’t know why your circulation is so affected but it is and the stockings prevent all the blood from flooding your feet or something.
Your mother comes in, asking how you are, and you say you’re feeling a lot better. The nurse concurs, says you’re doing super. Your mother appears unconvinced and unpacks a paper grocery bag that holds three small stuffed animals: a penguin, a bear, and a cat. She lines them up on an empty bureau top. These are from your neighbors. Also a card from your eighth-grade homeroom. You talk about Daddy and your brothers and their visit the next day.
A small crowd forms outside your door before your doctors lead them in. There is overflow. Your neurologist whips out his rubber hammer and tells you he’s going to do a quick exam. He isn’t worried, it’s just to make sure. Unfortunately, the nurse has to unpeel the stockings she has just put on you. You don’t like the scraping of the hammer’s pointy handle against the soles of your feet. It always hurts more than seems right. As it does today, nothing new. The neurologist thwacks the rubber hammer on your knees. Nothing happens. You feel the students’ collective note-taking on that point. Gets them every time. Not a single reflex! You are a teaching tool. The exam’s pin-sticks are unpleasant but over with quickly. Your doctor gives one of your feet a cordial shake as he moves to take questions. The students listen. Hard. Easy to tell students from interns and residents: students still have facial expressions. The nurse smiles at you, and she and your mother re-stocking your legs.
Your orthopedist finishes chatting with his own group and stands next to the bed. You go on alert. He had told you pre-surgery that what’s coming next is potentially quite painful. He actually said the word, no sugar-coating.
You try to stay limp which is a lot easier than usual. Your mother’s expression is almost pure furrow. You tell her you’re fine. The nurse pulls out a bunch of canvas straps to your surprise and nimbly straps you to the bed. Your orthopedist announces the start of the tilting. Your neurologist is at the foot of the bed, hands in his coat pockets, watching intently. The orthopedist presses a button on a box attached to the bed by a cord. The bed very slowly begins to move you toward a standing position. Very slowly. Even the slight angle is kind of breath-taking for you. Your orthopedist asks how you are. With the bed stopped, you feel your breathing slow which is good because the deep breaths make your back feel as if it is being eaten alive. You say you’re good. Your mother’s lips are missing in action. Onward and upward.
You realize the group is quieting. They relax, you relax. Long before being fully upright, you feel your blood, seemingly five tons of it, fall toward the floor. Your feet in the stockings are toasty warm. Your mother says, “Her face is dead white.” The doctor nods and stops the bed again. You do feel light-headed but not dopey so you concentrate on lying against the bed and try to reassure your mother. Yeah, right. After a blood pressure check and a look-see at your hot feet, there’s the all-clear to continue. Forty-five degrees is the goal on this first day.
They achieve the target angle in ten more minutes. Once there, you have the sense you’re strapped to the top of a sky-scraper, everything seems so far down. But after a pause when you aren’t feeling much pain, it swoops back down and drops a rattling load of red-hot chains down your back. Relax. Go limp. While you are being mauled. By an eagle?
Your head lolls to one side and you start breathing through your mouth, momentarily bowing out of any connection to your audience. You have one master to deal with. It holds your face between its palms, makes you stare into its eyes. But the blessed Demerol is shot into the IV – no vision needed to know its no-nonsense force – and you get control of your face straightaway to keep your mother in some kind of order. Not that your mother ever breaks apart but any half-way sensitive person could hear the cry and boom of ice invisibly cracking. It has to hurt, the way it sounds. There’s a reason why thirteen year-olds go through initiations without their parents having to see it. Both sides would have that much more pain.
But as if to tempt the eagle into another attack on your vertebrae, you look at your orthopedist and ask what’s next. He had said it would hurt. So let’s see how much. Soonest done, soonest over.
Prometheus. Strapped to that mountain-side, nothing to do but look down at his toes and drift between defiance and dread. Must be where the eagle idea came from. Imagine how terrible this would be if there really, actually were an eagle devouring your spine, not just today but every day. Or if your mother, if the doctors and the nurse, if every rapt face in the room, was wanting you to be in agony right now. If they were cruel. And violent.
You have to breathe through your mouth for a minute because thinking of this pain blast as someone’s good time makes you nauseous. As it is, the pain is awful but it isn’t wrong. (And it isn’t happening this moment.) Or imagine having done something you thought was right and the reward was having your insides ripped out without any Demerol. If that was someone’s justice.
Your orthopedist is asking if you can move your feet in a walking sort of way. The straps keep you from proper walking but you shuffle your feet in a little disco-jig. Without moving on top. Your neurologist nods happily. Your orthopedist says, Good, what we want to see. Your mother smiles and smoothes her daughter’s hair with one hand while hugging herself with the other. Your mother says you still look very pale. You ask her what she expects you to look like after just being opened up like a can of tuna fish. Your orthopedist breaks in to announce the tilting down. Your neurologist announces his exit. Once more you are without words. This time it’s because the drift back down brings the gentlest wash of relief, covering you with an ocean mist of sleep. The tidal pull is astonishing; the pain before and the sleep now, where are you in this? Finished with his notes, the orthopedist clicks his pen and thanks you for being a real sport about something he knows hurt. He says the pain will decrease but you need to tell them how it is. Eyes closed, you say you’ll complain if they want you to. You doze.
You don’t know how to tell this story to your friend when she and her mother visit the hospital in two weeks. You’ve always been very different from each other and now she looks at you in a frightened way when she’s unguarded and you can’t think of anything to talk about.
You don’t want to tell this story to most of your high school and college and early workplace friends because you don’t want them to focus on these moments of medical drama. They skew the picture of who you are.
You don’t know how to write this as a story for more than two decades of being in a women’s writing community where most don’t identify as disabled. You want it to be material that becomes fiction but it refuses to be pounded into another shape.
You don’t feel right telling this story as a Bay Area crip because memoir that focuses on the medical dimension of disability gives such a limited view of living with a disability.
You tell this story because this is part of who you are. This is part of your disability and your disability is more than a social construct. You are not ashamed or angry that physical pain has been part of your disability and, therefore, your life.
You tell the story because this is what happened: Your mother drove you to Newington Children’s Hospital on Easter morning, in 1979, in a pouring rain. She was nervous. You were not. The Doobie Brothers song, “What a Fool Believes” was playing on WNBC-AM and your heart was light, light, light. This spinal fusion was getting you out of your Milwaukee back-brace at 13, instead of 22. You didn’t care about aluminum rods in your spine, burn-beds, or being in a body-cast for six months. You could handle anything. You wanted to be tested.