“Karen,” I said sharply to my sister, after she touched my sheets one visit. “Fix them. Now.”
She laughed. I didn’t. “Tuck them under. Tighter.”
I could see—but not feel—the outline of my toes edging to the corner, searching for any pocket of escape. My bedsheet vigilance also served as a handy distraction from the Operative Summary report that I kept peeking at. Certain phrases had started bobbing to the surface, sharp and dangerous, impossible to shove back down once read: . . . major dural attachments . . . a large portion of the dura had to be excised . . . which included nerve roots on both sides because they were embedded in the dural-based portion of this tumor . . . concerned about sacrificing the radicular arteries at this level but no choice . . . ended up excising a large portion of the dura . . . necessitated major reconstruction . . . sewed in a dural replacement . . . a challenging case.
Somehow word had spread that, although the surgery was successful, something was still very wrong with me. I got a panicked email from my friend Michael who had heard from my friend Fli who had heard from our friend Liza who must have heard from my parents or my sisters or Rich, that I was still in hospital, that no one knew when I would be leaving, that I couldn’t walk. I must let Michael know I’m perfect, I thought. I wrote him back right away:
All is not doom and gloom, I can promise you that. In fact, I have had some of the biggest laughs ever these last few days.
Par example:
Sheryl’s daughter, who is seven, asked her if I still had legs.
Henry, after spending several days in Collingwood with my little sister, Jackie, while Rich and I tried to shield the boys from some of the scarier aspects of my diagnosis and imminent surgery, declared that he was having the best week OF HIS LIFE.
And yesterday, Joey said that his friend Ethan passed on his condolences. I said: please tell him I say thank you. And that I’m not dead.
Michael replied within minutes.
I know it’s not doom and gloom, but come on, a BIT of gloom is permissible.
I had a dream that you were partway down a cliff, on a ledge, and I was trying to climb down to you. Sad, huh?
“I’m not reading any more emails,” I told Rich.
“Let me take care of that,” he said. “I’ll update everyone, keep people in the loop.”
Better them than me, I thought. I was much happier being looped than being in the loop.
My back was on fire. It felt as if it had been sliced open, which it had. Staples held the top part of it together, an image that made my stomach turn. I hadn’t yet tried putting on a bra. I wondered how I would ever manage to get my arms around my back without my back coming apart. Rich and my parents asked the doctors and nurses dozens of questions every time they came in the room—but I was mostly silent. Still, I tried to concentrate on the answers and to write down everything that was said. When I looked at my notes later, most of what I had written was spelled wrong or only half answered. There were whole lines containing only ellipses and question marks. I couldn’t think straight, and because Rich was attuned to my every cry of pain and sudden panic attack, he couldn’t think straight, either.
After one particularly harrowing attack—for which I swallowed a double dose of Ativan—my children came to visit—the first time since my surgery. I begged Rich to heave me into the wheelchair—even though I wasn’t in any condition to be sitting—so that as many indignities as possible would be hidden from sight. I remembered well Joey’s reaction when he saw me in the hospital right after Henry’s C-section birth. He squeezed Rich’s hand while trying not to stare at the tubes sneaking out from under my sheets. He wouldn’t hug me. He smiled, as if to say—I’m sure you’re still very nice but a restraining order might also be very nice.
Once I was positioned in the chair, Rich hastily tossed a blanket across my wandering legs. It was all I could do to keep my pumpkin head up. The kids came in slowly and sat across from me. I was alert enough to register their twin looks of worry and confusion. None of us were prepared for this mess, but as parents with pretty decent instincts, Rich and I had failed to give them enough information. There were things I needed to say, but I was so tired. My eyelashes felt as heavy as velvet curtains.
“Joey, you need to know something,” I said, and then paused, lighting on a great idea. I put my elbow on the arm of my chair and then plunked my head on top of it, but then I forgot what it was that I needed Joey to know. My Ativan-addled brain sloshed from side to side while my children looked anywhere but at me. Henry tested out the movability of his mouth, sticking his jaw out and moving it left and right. He picked both feet up and looked at them, put them down, picked them up again, looked at them. The cuddler in the family, even he was wary of getting too close.
“First of all,” I said loudly, my head feeling much lighter cupped in my left hand, “this is only temporary. It’s true that I can’t walk right now but I’m going to be going to rehab for a while and they’re going to help me figure it out by me—my? me? no, my, I’m sure it’s my—going there.”
I looked around the room until my eyes found Rich. Was someone keeping track of how many times I said the word going? No one looked too alarmed. I continued. “Joey? Okay?”
“Fine,” he said.
“Joe.” He looked at me. “Dad and I didn’t lie to you. We honestly thought I’d be out of here in three days. Things were just a little more complicated than any of us thought it would be but I’m going to be okey-dokey. Okey-dokey?”
“Fine.”
I felt helpless, afraid, and useless, but I was too drained of energy to say anything more. My left hand still holding up my head, I fell asleep before they even left the room.
•
My nervous system had been severely rattled by surgery. My spine was in revolt. I must have been told that the spine likes to be touched about as much as a cat likes a nice hot bath, but I don’t remember. I also don’t remember hearing about the phenomenon of spinal shock, which occurs almost immediately following surgery and involves the loss of all neurologic activity below the level of injury, which in my case was between my shoulder blades, producing a profound inability to relax the bladder. This bit of news grabbed my attention immediately, diverting thoughts away from my wandering legs and feet.
I couldn’t pee. My brain received the message that I needed to, but like a bad receptionist, it held on to the message while it tended to other things.
During the previous five months, I had been stingy with the doctors regarding anything other than my tingly feet, controlling what I believed to be the only path worth pursuing. I should have come clean regarding all my symptoms, but the word tingles was so innocuous, so cute, it was easier to believe that nothing too onerous could possibly come of it, unlike the other less-cute symptoms—fiery/icy thighs and a bum so suddenly clueless it had trouble maintaining its balance on even the widest of seats. Of course, all my troubles were connected—each symptom plugged into the same switchboard. After the tumor was removed, the sheer volume of unplugged wires was so overwhelming, I decided to focus on the one I assumed to be the easiest to plug back in: peeing on my own.
Several times a day, a nurse came to my room, shooed everyone out, shut the curtains around my bed, and attached an IC—an intermittent catheter—to my urethra. I cried almost every time. I was unable to keep my knees upright while the nurse attached the long plastic tube to me.
“Should I hold my thighs up?” I asked my nurse.
“No need.”
She moved quickly, efficiently, without eye contact.
“Do you have children?” I asked.
She sighed heavily. “Yes. A son.”
“How old is he?”
“Old enough to know better.”
Her hands were steady, but not her voice.
“Has something happened?”
“You don’t want to know.”
“That doesn’t sound good.”
I had been holding my thighs up but
decided to slowly, slowly pull my hands away, only to watch helplessly as my legs bounced back onto the bed froggy-style. “I told you, you could just let them flop to the sides if you wish.” Her voice had grown gentler. She looked at me, waiting for me to say something. What I wanted to say was: This is not what I wish. What I wish is that my legs will do what my brain has politely asked them to do, and stay the fuck up.
Instead, I said, “You seem like a really good mom.”
“Thank you.” She smiled at me.
“You have such nice hair,” I told the next nurse.
“What a sweetie you are!” she said.
To another nurse: “I’ve always wanted to go to Greece. Tell me what it’s like.”
And another: “I said well-done, not dead!” And she laughed and laughed.
And another: “Do you think I’ll walk again?” No answer.
The next one: “You sound like an amazing cook.”
And later: “I can’t believe you stole me a muffin!”
And the next: “You’re my favorite.”
After each nurse left, all I could think about was my next IC and how much it scared me—not because of what it did for me but because of what it meant I couldn’t do for myself. It was as if my brain and my sacral nerves had had a huge fight and were now giving each other the silent treatment. Peeing on my own was proving to be as easy as climbing a mountain with no legs.
I was facing two equally plausible possibilities: Either my peeing problem would resolve itself in six weeks or so, around the time spinal shock starts to ease up, or there would be no resolution, necessitating the use of a catheter for the rest of my life. Had I known the extent to which my entire nervous system had been shaken, I would have felt powerless, but my ignorance proved to be a lucky break.
A woman hugging several grainy brown files, spilling over with paper, came to see me one morning.
“You’re going to be transferred to Lyndhurst,” she said, “a spinal rehab facility, but we don’t know when.” She looked exhausted. “They don’t have any room right now.”
“Okay.” I couldn’t think of a single question to ask her.
“What do you mean, you don’t know when?” Rich asked, rising from his seat. “Days? Weeks?”
“I really don’t know. When a bed becomes available, she’ll be moved.”
“Are there no other rehab facilities in the city? No other place she can go? She doesn’t know how to walk!”
“We will have her moved as soon as possible, I promise.”
“We’re going to the States,” Rich said, once she left. “I want to speak to Joel. This is insane. You can’t just stay here in the hospital indefinitely until some bed turns up for you. You’ve been here over a week already! How long are we supposed to wait? I don’t care how much it costs—we’re going to the States.”
We got in touch with Joel, who did an admirable job of calming Rich down. “They’ll find her a room at Lyndhurst soon,” he said. “Don’t worry, Rich.”
But it was all Rich could do. Worrying was his new job. I was also worried, but for a different reason. The nurses had told me only the day before that once I went to rehab, I would likely have to learn how to catheterize myself. That was never going to happen. I now had my first post-surgery goal: to pee like a normal person.
Rich had been with me every day and every night, sleeping in the visitor’s lounge. Sometimes he was lucky enough to get the long couch to himself; other nights he slept on two chairs pushed together. He never once complained. But I needed him to leave for a few hours. I had hatched a plan and wanted to surprise him the following morning with the outcome.
Enter Fli—one of my closest friends—with a huge order of sushi and several bottles of water. Fli and I had been roommates when we were both struggling actresses. What we “struggled” with then made us baha with laughter now: for me, what boys to kiss; for her, what girls to kiss. It was a glorious angst-filled time with nothing more pressing to focus on than our (relatively) flat-bellied navels. Now, with a little life under our belts, we both knew what struggle meant. But things were about to get better. My plan had three simple components: eat a little, drink a lot, pee. What could be easier? I could sense Fli’s struggle not to Google, right in front of me, how best to do this. Her legendary attention to detail was why she was the perfect scene-study partner when we were both students in theater school: She did all the work, I did all the eating. But I didn’t need Google to tell me that the best way to empty a bladder was to fill it first.
Enter Archie. The most gorgeous, hot male nurse I’d ever seen. I told him my plan while Fli and I ate and drank and drank and drank.
“It takes a little more time than that to get things moving,” he said, his arms flexing without him even trying. I was still blissfully unaware of the massive understatement contained in the words a little more time. What he meant was possibly weeks, months, years, never. But I couldn’t even begin to see that then.
Eight o’clock and eight cups of water later, I kicked Fli out and prepared myself for the miracle that was all set to happen right there in the acute care unit of St. Mike’s hospital.
“Archie,” I said. “Let’s do this thing.” I held up a warning hand. “But I’ll need a female nurse, please. No offense.”
That was my first mistake.
Getting back and forth to the washroom was a production no one looked forward to, which was why it was as easy to hail a nurse as it was a hedgehog. Just that afternoon, in earlier fruitless attempts to use the washroom, Milena, the Christian Rasta Care Assistant who came when I buzzed, had her hands full. Transferring back to my bed from the wheelchair proved a Herculean task. I kept apologizing for being useless; she kept apologizing for having such skinny arms. With a lot of huffing and puffing, I managed to get my whole top half, including my uncooperative bum—which couldn’t tell the difference between a chair and air—onto the bed, but my legs dangled precariously over the edge and I couldn’t lift them up on my own. The only way I wouldn’t slide off the bed altogether was if Milena threw herself on top of me and fastened me there with her lanky body, which, shockingly, was exactly what she did. We were both breathing heavily, our noses touching, and then we burst out laughing. Milena grabbed the sides of my head with her latex-gloved hands and planted a kiss on my forehead. Praise Jesus.
But that night, for my first round trip to the washroom, two nurses arrived in record time and, with as much help from me as I could offer, flipped me onto the commode and rolled me to the washroom, where I peed with very little drama. It would appear that not only had my experiment worked, but it was over. So much for Archie and his doubtful attitude.
10:20 P.M. I had to pee again. No nurse to be found.
11:10 P.M. Still needed to pee, felt quite desperate. Then, Carlito came.
“I’ll look away,” he said, as I tried to pull down the Depends my poor father was conscripted to buy in case my bladder ever decided to start without me. I held a little towel across my lap for modesty.
“Hold this, please,” I said, passing it to him to shield us from each other like we were Jewish orthodox newlyweds about to get down for the first time. I managed to pee again, but not nearly enough. My belly was sloshed. This run of male nurses was throwing me off my game.
11:40 P.M. I had to pee again. The need was so desperate, so crazed, I feared I was losing my mind. No matter how hard I pressed that buzzer, no one came.
Everything I’d ever heard or read about the dearth of nurses in our health care system was true. I had been surviving because I knew how to joke and to ask the nurses questions about themselves. I knew how to pretend that the only reason I was there was to tell them how pretty they were or how well they did their job or what a great parent they must be. I made them laugh, and Rich told me how much they loved me. Even in the hospital, especially in the hospital, I needed that love: Love represented the golden ticket. I puffed them up in the hopes of getting a shower or someone to lift me out of my bed and on
to the commode. In prison, cigarettes or ramen noodles might have done the trick; here, my only currency was charm, but as the night wore on with no relief or sleep in sight, my charm well was running dry in direct inverse proportion to my waterlogged belly.
I pressed the buzzer with heedless abandon, not caring how grating the sound must have been at the nurses’ station.
Archie finally returned. We eyed each other as though ready to draw our guns. He was there to do exactly what I needed him to do, exactly what his job required him to do, which was to stick the damn catheter in me and drain me, motherfucker. But I wouldn’t let him.
“I can do it,” he said.
“No. I need someone else.”
“There is no one else,” he said, frustration pulsing in a vein on the side of his bald head.
“Please find someone else,” I said. “Find someone else, Archie! Go! Find someone else! Find someone else! Go! Go now! Go!”
He went.
When I am like this at home, my son Henry will get very quiet and then shake his head and mutter “Crazy lady” under his breath. I knew the only person I was hurting was myself, but I insisted that a woman and not a man touch my hoo-ha, even if it was a hoo-ha I could barely feel. I cupped my belly with both hands. The darkness of the room did nothing to mitigate my misery. A while later, I pressed the buzzer again and Archie returned.
“No one has come yet?” he asked, his face still beautiful, but distressed.
I shook my head.
He pointed to himself with a raised eyebrow: Are you ready to allow me to do my job now?
I shook my head.
He sighed, then dragged what looked like an ultrasound machine on wheels my way.
“At the very least, I have to check,” he said.
“Check what?”
“What level you’re at.”
He rubbed gunk on my stomach and then waved the wand around it. When he saw what he needed to see, he stepped back and clasped his hands over his head and puffed out his cheeks.
Walk It Off Page 4
