“You have an infection,” he explained. “It got into your skull and a piece of it, the piece they sawed into when they fixed your aneurysm, was so diseased that they had to take it out and throw it away.”
“Okay,” I said, bracing myself for the part where he’d tell me I was dead.
“They scraped out as much of the infection as they could, and sewed you back up, but you have a deep indentation above your left eye where the forehead bone used to be. You’ll be like this for a year, and then you’ll have to have another surgery so they can fill in the hole. They’re going to give you a helmet . . .” His voice trailed off.
“Okay,” I said again, still waiting for the terrible news.
“They’ve started some strong antibiotics for the infection and you’ll be on them for a while. At home, too. Through an IV.”
Clearly I was missing something. “I don’t understand. Will I be okay?”
“Yes.” Wait, what? I didn’t know if I wanted to kiss him or punch him.
“I’m so sorry, Jess—”
“Eli!” I was actually laughing. A helmet? Some drugs? Big deal! I asked for a mirror, too relieved to feel nervous. How bad could it be? And then I saw it. Part of my skull was missing, all right. My head looked like a partially deflated beach ball that someone had bashed in with his fist. The top of my left eyebrow disappeared into the hollow. There was no forehead above my unseeing eye.
“Okay . . .” I said. “Okay. Okay. But this is temporary, right? This is temporary.” Eli nodded. I made him tell me a few more times that I’d be fine, just to be sure, then sent him to get my parents and sank back into the last delicious moments of my postanesthesia euphoria.
• • •
This time the surgeons had gone just sort of right up to the brain, without going inside, and there hadn’t been a hemorrhage, so things were only a little bit dreadful—okay, medium dreadful—and only for a couple of days. But sometime in there, as soon as the anesthesia had fully lifted, I noticed something: I couldn’t smell.
The antibacterial Cal Stat that everyone rubbed on their hands before they approached my bed, the trays of hospital food that went uneaten before someone carted them off, the sickly sweet scent that hung over the cans of vanilla Ensure, my mother’s perfume, Eli’s unshaven skin: nothing.
My surgeon surmised that with all of his scraping around in there, my olfactory nerves had been damaged. He said it casually, as though explaining what happens when you skin your knee.
“Will it come back?” I wanted to know.
“Probably not,” he said lightly, and then, “But you don’t really need your sense of smell anyway.” I know he wasn’t trying to be cruel. From a medical perspective, he must have meant, it doesn’t matter whether or not you can smell. I was horrified.
Strangely enough, my father had lost his own sense of smell about ten years earlier in a Razor scooter accident. (Wear helmets, friends.) He discovered the deficit one morning not long after, when he splashed puddle after puddle of aftershave onto his face, finally determining that it must somehow have expired and lost its scent. When he walked downstairs and into the kitchen, my brother nearly keeled over.
There are some funny stories about toast left to burn, and the dog puke in the basement that once went unnoticed for days while Amy and the kids were away. He missed things, though. We’d forget sometimes and moan over the aroma of the brownies baking in the oven, then see my dad stick out his lip in an exaggerated pout. I remember a time one summer when my brother and sister ran in from the backyard. They were maybe seven and eight then, and he’d said to me, “You know what I miss? The smell of their sweaty little heads.”
I thought of that now, of all the scents I’d miss, and all the scents I’d never know, and for the first time since my fall, I felt a tiny black hole stretch open inside of me. For the first time, the thought occurred to me that maybe everything was not going to be okay. An eye. My sense of smell. What was next?
But the fever was coming down, and soon it disappeared. The antibiotic was working. Someone came in to fit me with my helmet, which turned out to be a hockey helmet. An actual hockey helmet. White plastic, with a thick elastic chin strap secured on either side to a black rubber loop by each ear. It came down over the part of my face that was missing and, by hiding the defect, made me look sort of normal. As normal as a woman in a hospital gown and a hockey helmet can look, anyway. I had some soreness in my neck that my doctor told me was expected after an infection like that. My glands and lymph nodes were in overdrive, he said, but that would clear up soon. I could go home the following day.
Before I was discharged, an occupational therapist came to evaluate me. It’s clear to me now that she was young—newly and thus faithfully wed to the protocols she’d learned in her training. She carried a clipboard with a list of questions.
“Do you live in a house or in an apartment?”
“An apartment.”
“How did you get inside before you got sick?”
“Excuse me?” It was the “before you got sick” that threw me. The implication that I’d have to do it another way now.
“Are there stairs?”
“Yes, a few up to the front door.”
“Is there an elevator inside?”
“Yes.”
She scribbled some notes onto her pad.
“Did you toilet yourself before you got sick?” I couldn’t believe she was serious.
“Yes.”
“How did you bathe before you got sick?” The healthy, unterrified version of myself would have realized that all of this “before you got sick” business was just standard language. The therapist had probably been taught to ask the same things in exactly the same way of each of her patients, many of whom—unlike me—had limited mobility before whatever had landed them in the hospital, or had suffered debilitating physical or cognitive deficits. But hadn’t she read my file? And if she had, and she still thought these questions applied, was I worse off than I knew? Panic crept up along the back of my neck.
“I got into the shower. I washed my hair.” My throat was so tight that it hurt to talk. Why was I speaking in the past tense?
“Can you show me how?” she asked. I lifted both of my hands to my head and wiggled my fingers around. She scribbled another something down. Silent tears had begun to squeeze out from the corners of my eyes. I wiped at them with the back of my hand.
“Just another few questions. What did you like to do before you got sick?”
“I liked to cook?” I squeaked.
“Well,” she said, “maybe we can get some peanut butter up here and you can spread it on some bread. Would you like that?”
“No!” I gasped. I was really crying now. “No, I would not like that!” Would that be the extent of my cooking now? “After,” as opposed to “before”?
The therapist was assessing my ability to take care of myself, but that was the least of what I wanted to be able to do. I wanted to take care of other people. Host dinners at my table the way I’d always done. Chop the garlic, stir the soup, slice the cake. The cake I’d baked.
I went home. My mother was with us now. She had washed the sheets and made up the bed, and I tried to sleep, but the pain in my neck was building. I ran my doctor’s reassurance on a loop through my brain and breathed, and Eli hooked me up to the IV as he’d been shown. I watched the medicine drip into my body and drifted off.
• • •
The pain choked me awake, stabbing into my neck on both sides. It was dark now, near midnight, and I could tell that I had a fever. Eli stuck the thermometer under my tongue and we watched the numbers climb. I was back in the hospital that night.
This part was worse than anything that had happened so far. It feels crazy to say, after the hemorrhage and the surgeries, but it was. I couldn’t take the whiplash, the you’re-okay-you’re-not-okay. Residents disag
reed loudly over my bed about what was going on. Doctors said different things. The infection was raging, or it was on its way out, or the medicine was working, or it was time to try another, or my blood counts were off and I’d be put in isolation, but no, wait, my blood was fine and now they’d do an MRI. Someone wheeled me off downstairs and left me in the hallway, but no one came to get me, until a person finally stopped, and I heard him ask around to find out where I had to be. And still the fever, and the pain, so a nurse gave me a button and said push it for the morphine, and I did, but no relief, until finally, “We think you might be having a reaction. You’re going off the vancomycin, and we’re starting something new.”
My fever rose and fell as the offending antibiotic made its way out of my system. I was afraid to be alone anymore in the hospital. Eli had come down with a cold and had to stay away for a while, so my mom and dad took turns spending the night in the reclining chair by my bed. On its way to breaking, the fever reached its peak. My vision blurred and I started to shake, and my mother called the nurse, who came with ice to cool me down. I was shivering so hard that my arms and legs were practically flailing. Without any sense of what I was doing, I writhed away from the ice. I didn’t mean to. I didn’t not.
The nurse was cross. “Are you refusing treatment?”
“That’s not what’s going on,” I heard my mother say.
And then everything went white. I need this to be over, I thought. I’m okay now to be dead. Be not awake now. Please. I can’t. It’s fine. I’m done.
CHAPTER 20
Three Mushrooms
I came home in mid-October. There was no relief in it this time. No peeking into rooms or fumbled cups of tea. I don’t even remember walking through the door. I needed to be lying down and went straight to bed.
It wasn’t only that I was sicker than I’d been before the infection. This time, I was afraid. Without the round-the-clock monitoring and a surgeon on call I felt a constant tickle of panic. Bad things kept happening. Doctors had told me I was fine when I wasn’t, again and again and again. Eli knew me better than anyone and even he hadn’t seen that I wasn’t okay. He’d said there would be no more surgery. He’d said we were done. When we weren’t, the best doctors in the world had struggled to find out what was wrong, and then to treat it.
I’d try to talk myself down: They sent me home from the hospital. That means I’m improving, right? That I’m going to be okay? But I’d ended up right back there the last time. I’d heard what my infectious disease doctor had said right before I checked out: “You’re not out of the woods yet.”
On and on my thoughts unspooled. What was I to believe now, and whom? No one, my anxious brain answered. It was my job, then, and mine alone, to make sure that I stayed alive. I put myself on high alert. Everything was a symptom that pointed to a recurrence of infection, a stroke, a heart attack, the rupture of my residual aneurysm. I was a helmet-clad sentinel, half blind, unable to smell, with a busted-up skull and an itchy trigger finger. I had no idea what I was looking for, but I was ready to shoot at anything that moved.
I felt dizzy and nauseated. My vision blurred. A swimmy ache in my shoulders and chest would come and go along with a low-grade fever. I’d break out into a sweat while sitting perfectly still, sip at the air, trying and failing to top off my lungs enough to feel full. I took the sedatives the doctor had prescribed, but adrenaline fought back and won. I lay awake, pummeled by a sympathetic nervous system stuck in simultaneous fight and flight, and traced the indigo block-print flowers on the quilt with my thumbs.
The trips to the ER and back during the days that followed didn’t help matters. There was a scare over my PICC line, the catheter for the antibiotic that ran through a vein in my arm to my heart; an intestinal infection (the dreaded C. diff ); and a new, higher fever that we feared was something, but wasn’t.
Pseudomonas, the bacteria that had exploded in the tissue surrounding my brain and taken out that chunk of skull, is insidious. It knows how to hide, get very quiet, make itself invisible, then flare back up in a flash. That was why I would have to wait a year for the reconstructive surgery, to be sure that the infection was truly gone and not lurking, undetected, in my healthy tissue and bone. It was why, three times a day, Eli plugged me into an antibiotic that, even as it drove out the infection, made me feel sicker. I lost more weight. My tongue turned black. My joints ached, and when I touched my head, strands of hair came off in my hand.
Two months earlier, mine had been the body of a healthy twenty-eight-year-old, fitter than ever before. It wasn’t supposed to be capable of this kind of collapse. But it was, of course. A body always is. I was furious with myself for not seeing that, for ever thinking that health was something I could count on. I’d always had excellent luck and my genes were enviable. No broken bones, maybe one cold a year, great-grandmothers and great-great aunts who lived into their nineties. I took care of myself. I ate oatmeal and kale. I flossed. I followed the rules that were supposed to keep me safe.
Don’t get me wrong—I’d imagined illness. Critical, devastating, out-of-nowhere illness. I was right there in the imagined hospital rooms of my worst nightmares, alongside Eli or a parent or a friend. Only I was never the one in the bed. I was the big-hearted helper, the devoted cheerleader. I brought the cookies.
• • •
Eli was in charge of the medical stuff. He kept track of my medications, and when it came time for my middle-of-the-night antibiotics, he would shut off his alarm and creep around to my side of the bed. By the time I would open my eyes, he’d be standing over me in his underwear, hooking up the plastic tubing to the port in my arm. I was quiet sometimes, and sometimes I’d cry. I remember him brushing the hair away from the missing part of my face and smiling down at me with crinkly eyes. He moved quickly, carefully. Then he’d shut out the lights and I’d float off into a foggy half sleep while the bag emptied into my body.
My mother stayed with us, on an air mattress in the living room, during my first few weeks home. It was important, she said, that Eli and I remain husband and wife through this, and not just caregiver and patient. She helped me with the most basic, private tasks, rubbing my feet with lotion, holding me upright on the toilet when my legs would start to shake. Sometimes, she would bathe me, wash and fold our laundry, prepare lunch, and then quietly slip out for an hour or so, leaving us to act out, as best we could, something resembling our normal life. Full garbage bags disappeared to the basement bins, beds got stripped and remade, dishes washed, counters wiped clean. My nightstand, a jumble of medicine bottles, hand sanitizer, tissues, juice glasses, and a thing I’d breathe into to exercise my lungs, got straightened and cleared. She didn’t ask; she did.
When I was a little girl, my mother was everything to me. All the more so after my parents separated. I was seven, and they divorced a few years later. I thought the intervening time meant that in the end they might stay together, but it was actually just how these things sometimes go. In the years after my father left, my mother was finishing up her master’s degree and working full-time as a management consultant, yet I never remember her not being around. She drove me to play rehearsals, talked me through all of my childhood stresses and woes, taught me how to visualize success the night before big tests, and read every word of every school paper I wrote until I went off to college. She was the most capable human being I could imagine.
So it scared me to sometimes find her in the middle of the night, weeping on her bathroom floor. She’d have her knees up under her nightgown and a roll of toilet paper in one hand. She’d tear off a few squares at a time to blow her nose. I’d do my seven- or eight- or nine-year-old best to comfort her, sink down beside her, wish that I could gather her up into my small body and keep her safe. When I would start to cry, she would gather me up, and I’d press my cheek into her chest wet with both of our tears. In the morning she’d be back to it, writing cheery notes in the pages of my notebook for me to fi
nd in the middle of my school day, flashing me a sign language “I love you” as I climbed onto the bus.
Most nights, we had dinner together the three of us, my mom, my sister Kasey, and me. While my mother mourned the loss of her marriage, she also mourned the loss of her family—of a certain idea of family that meant a mother and a father under one roof and forever-and-ever love. Family dinner was a way of shoring up what was left, of making our family feel like three out of three instead of a remainder. It was a sign that all had not been lost.
My mother wasn’t the type to cook up a storm at the start of the week, planning and freezing and making lists. We had leftovers sometimes, sure, but most of the time she came home after work and started from scratch. She’d snap on the small television she kept on the kitchen counter and cook through the six o’clock news, Wheel of Fortune, and halfway through Jeopardy, at least. Then the TV would go off and we would sit down to eat, my mother at the head of the long antique table that she and my father had bought together years before, Kasey and I across from each other on either side.
Dinner was never a little of this, a little of that, but something hot that had a name. Baked Salmon (with lemon pepper and dill); Stir-Fry (with water chestnuts and baby corn). There was a casserole with elbow noodles, frozen vegetables, and ground meat that you spooned from a glass bowl; and—an exception to the hot rule—the “mondo salad,” with iceberg lettuce, chickpeas, cucumbers, black olives, cherry tomatoes, sliced carrots, hard-boiled eggs, and bean sprouts, topped with Thousand Island dressing for my mother and Wishbone Italian for my sister and me.
My mother does not hurry in the kitchen. She is, shall we say, thorough. She cubes butter with a dinner knife a single pat at a time. The way she eyes and levels cups of flour, you would think she were transferring gold dust. Her drawn-out manner of doing things had sometimes been a tension point between us, but that October, her pace was perfect. Maybe because it allowed my own slowness to feel not so far off from the way of the world; maybe because her tremendous care was more important than any efficiency. My mom moved at my speed without comment—a kindness I hadn’t always extended to her—and when she took twice as long as necessary to wrap my PICC line in plastic before my bath to keep moisture and infection out, I was grateful. When she smoothed and tucked and smoothed and tucked the bedsheets I’d be crawling right back into, I was glad.
Stir Page 13