I finished my story and felt instantly awful; I couldn’t even look at my friends. Kellan came to see me that day because that was his job: to offer support to new patients and open their eyes to an alternative life. He had done the right thing, it just wasn’t the right thing for me.
Jeff stood up and was scanning my room.
“Where is it?” he asked.
“Where is what?”
“The folder that guy gave you.”
I pointed to the windowsill where I had tossed it. Jeff strode over and grabbed the folder. He tried to rip it in half, but the laminate cover slipped in his hands. He strode back across the room and jammed it into the garbage can by my bed. Then, even though his foot barely fit inside the shallow can, he stomped on it.
“Done,” he said. “Want me to get rid of those dead flowers, too?”
•
I loved having visitors—it was my favorite part of every day. In my real life I was quite social, but I also guarded my own company carefully. I enjoyed the solitary routines of my day. I was good at making busywork when work wasn’t busy enough. I enjoyed running errands and ticking things off my list and sneaking to the mall on my own to buy things I knew I would probably return the next day, ensuring that the cycle of make-busywork continued. But inevitably, after a few days of this, I would start to feel strange, the symptoms piling up until the diagnosis was clear: loneliness. And then I’d start making calls: request for company, please.
But at Lyndhurst, I needed something social to look forward to every day. Lunchtime was my happy hour, when guests would most often visit. I had only one strict proviso: If you come for lunch, you bring the lunch. I wasn’t fussy about what we ate. In fact, I looked forward to the big reveal. Lunch, something I used to eat from a container while standing in my kitchen doing the crossword, was now an event worth dressing up and sitting down for. I would wait with anticipation, my all-purpose table lowered to lunch position. My guest and I would sit across from each other with our feast (sushi, Tim Hortons sandwiches, Thai food, homemade sandwiches, fresh salads) spread out over every cramped inch of my tray table and for that hour, in the eyes of those I loved, my old life was reflected back to me with a glimpse of my future self layered underneath. No one asked the unanswerable questions: How long would I be in rehab? Would I ever work again? Would I ever walk again? And no one, or almost no one, cried.
My friend Laura came for a visit one afternoon. Her smile was wobbly and tentative from the start. I had been at Lyndhurst for some time already, so I had forgotten how jarring it was for friends seeing me for the first time. Not long after she arrived, my body started to rebel. My bum was thick with pins and needles. I needed to lie on my right side to find some relief. Laura watched while I gracelessly transferred out of my chair and onto my bed. Once there, I had to face away from her to relieve the growing buildup of static in my left thigh.
“How about you move your chair over here so I can see you,” I said.
But Laura wanted to sit on the bed with me. I picked up my legs and carefully moved them to make room for her.
“Would you like me to rub your feet?” she asked, shyly.
“Sure!”
My enthusiasm was a lie. I hated having my feet touched. Each morning, before my physio session, Amanda would massage my feet and yank on my toes to activate them. I was able to handle this with the help of deep breathing and the knowledge that it was for my own good, but to anyone else, my feet were off limits. My feet even hated it when I touched them. And then there were the blasted visits from Dr. Emm, the physiatrist, who randomly popped by with her safety pins and feathers. Rich’s business partner, wanting to do something nice for me, asked if she could dispatch someone to Lyndhurst to give me a foot massage and a pedicure.
“No!” I screamed into the phone, as if the pedicurist/sadist were right outside my door packing hot stones and cuticle pushers.
I looked at Laura as she dug her thumbs into my arches. She was crying.
“Oh, honey,” I said. “Laura—it’s okay. I’m going to be okay, really. Just keep rubbing my feet.”
I empathized with her helplessness, but I did so from a removed place. I was not sad for myself. I felt like a Jenga puzzle—so many pieces of my previous self had been removed, and yet I hadn’t toppled.
And that’s when I found the answer to the question, What if I never walk again? I would be okay. Even if it remained unclear what form “okay” would take, I would be okay.
The days were getting shorter, crisper. I didn’t want to still be at Lyndhurst when it was too cold to sit outside at the picnic table. I couldn’t bear the thought of being trapped inside, wearing heavier sweaters and slippers. It was time for me to make peace with socks. It was time to get out of my chair.
•
Six months earlier, during my Jewish choir practice, my fellow soprano had suggested I call her magical chiropractor when I complained about my tingling feet. I ended up seeing him several times. Dr. Magic, while unable to pinpoint exactly what my problem was, presciently recognized that the bottom half of my body wasn’t listening to the top half. He encouraged me to walk on grass in my bare feet as often as possible. He seemed to intuit that my body needed grounding.
“Stand close to a tree,” he said.
“Are you suggesting that I hug a tree, Dr. Magic?”
He shrugged as if to say: can’t hurt.
The standing frame inside the gym had helped me get over the first hurdle—standing up without throwing up. The next hurdle was to figure out how to stand in a relaxed position outside the safety of the standing frame, on the grass, by my picnic table. Too often, I overcompensated for the muddled sensation behind my legs by overextending my knees. I had assumed that the moment I felt the stretch behind my legs it meant I had comfortably risen to my full height. One look in the mirror would have told a different story: I looked like a demented soldier.
“Soften your knees,” Amanda instructed over and over with a light tap to the back of my legs.
The tap was unspeakably irritating. Adding to my frustration was the fact that I couldn’t figure out where the tap was happening. A scratch on the top of my foot might register on my heel, while stubbing my big toe made my baby toe curl in pain. But I took my lessons with Amanda seriously and tried to apply them to real life, which meant spending hours outside standing up, then sitting down. It was like being in synagogue.
“Rei!” I yelled to my fellow patient as he walked my way. “Check me out!”
He was the only patient who refused to buy into my no-eye-contact shtick. He was always smiling and always moving and always alone. He wore his hair in a Dorothy Hamill bowl cut, which I was certain owed more to the lack of salon services at Lyndhurst than to a secret love of the 1970s.
He limped over with his cane, dragging his right foot.
I stood there, meaningfully, before plopping back into my seat. “I did it! Ten seconds standing up! Whooo!”
He smiled. “That’s how I started, too.” He spoke slowly, like a sensei.
“I was told not to try any of this stuff outside on my own.”
“Uh-huh,” he said. “Me, too.”
“I guess they’re afraid we’ll topple over and then sue their asses,” I said.
He laughed. “Oh well. You have to try, right?”
“It seems to me the worst thing has happened already, anyway.”
Rei didn’t say anything. I knew some of his story, although I couldn’t remember how I knew—a car crash, a foreign country, friends, some of them dead—but we didn’t talk about it. I don’t think he knew anything about me, but I couldn’t be sure. Fragments of patients’ stories were scattered throughout Lyndhurst. We only had to look beyond the tracks of our own wheelchairs to find them.
“I can’t believe how well you’re walking,” I said.
Rei picked up his pant leg with his good hand and showed me the band he wore over his calf and under his foot. “I do what I can. I watch you out here.
You work so hard.”
“We all do.”
Most patients’ stories happened under such ordinary circumstances, they made the end result that much more devastating: a slip in the kitchen while making dinner; a too-fast ATV ride in the country; tumbling off the gutter on a gorgeous fall day; blacking out in the bathroom; so many motorcycle accidents. They were all perfect candidates for magical thinking: If I hadn’t done this, if only I’d done that. My injury didn’t qualify for magical thinking—I didn’t go looking for trouble. Trouble found me. It also found Arpita.
I met her in the gym, pulled upright in the standing frame next to mine. Out of the corner of my eye, I saw her looking at me, but I refused to look back. She asked me a couple of questions and I gave her short answers before returning to what I was doing, which was the exact same thing she was doing: standing there, locked into position, looking out over the gym, trying to figure out where in space her body was.
Arpita had a nice face and huge brown eyes behind her oversized glasses. I decided to make an exception to my no-engagement rule.
“I was driving home from work one day,” she told me, even though I hadn’t asked her a question. “My legs started to feel tingly, then numb, then nothing at all in such a short span of time that I had to pull over and call my husband to come and get me. I couldn’t drive. I couldn’t feel the pedals. It’s been months now and I still have no feeling in my legs.”
“I’m so sorry,” I said.
“Yes. Every day, my husband drives here from Mississauga to give me an hour-and-a-half body massage.”
“Every day, really?” I asked.
“Every single day, yes.”
She was wearing sweatpants, like everyone else at Lyndhurst. I could see that her bottom was quite puffy. I knew what that meant. I stared straight ahead, concentrating hard, as if I were driving in a blizzard.
“What happened to you?” she asked.
“Tumor.”
“Can you feel anything now?”
I didn’t want to upset her by admitting that I did have some feeling—however foreign that feeling was—but I also didn’t want to lie. I felt I owed my body respect for the work it had been doing.
“A little bit,” I said.
“Can you pee?”
“Sometimes.”
“I can’t.” She paused. “I can’t do . . . either.” She looked behind her at her puffy bum. “I have to wear a di-a-per.” She pronounced the word in three distinct syllables.
“That must be really hard,” I said.
“So hard,” she said, and looked down. “So hard.”
She also had two boys, the same ages as Joey and Henry. Even with the teenage angst starting to kick up a storm in our house before the surgery, Rich and I were in the golden age of parenting—a time when we could decide at the last second that we wanted to go out for dinner without having to scramble for a babysitter, when we could let our kids hop on their bikes and go for a ride without standing in the driveway, arms crossed over our chests, making sure they looked both ways before crossing the street. While their moods were unpredictable, their love for us wasn’t. The hugs still came even when they thought they didn’t need them, and sometimes, when they came down to breakfast in the morning, their feet looked measurably bigger. I looked at Arpita and she looked at me. We were united in missing all that; we didn’t need to say it.
Once I’d broken the ice with Arpita, I realized there was one other patient I was hoping to meet. I had been surreptitiously tracking Carmen, whose progress appeared to be running along similar lines to mine. She looked about my age, maybe a little younger. I first noticed her in her wheelchair. Sometimes we were in the PT room at the same time, sometimes in the gym at the same time. She was always—quite literally—just a few steps ahead of me. I noticed her on the treadmill, when she advanced to two sticks, and when she took slow walks around the back of the facility where I sat at my picnic table. I would eat my apple and watch her. Sometimes we caught each other’s eye, then smiled shyly like one of us might ask the other one out. I liked her, even without a word shared between us. I felt invested in her progress, and oddly, I trusted her. So one day, after I had scored a seat at the tiny biped cafeteria outside the in-patient dining hall, I asked if she wanted to join me in eating a bag of chips. She did, which was when I learned that our beginnings were remarkably similar—tingly feet, persistent numbness, multiple visits with doctors, MRIs, months of anxiety, and then a spinal meningioma diagnosis.
“I can’t believe it,” I said. “It’s like meeting my twin. The odds of having what we had are literally one in a million, and here we are, the two of us, sitting at the same table.”
“Did you have a laminectomy?” she asked.
“Yes.” The back part of my vertebra had been removed to relieve the pressure on my nerves.
“Did your surgeon put it back after?”
“I’m not really sure,” I said.
“Who was your surgeon?”
I told her. But I did remember something from the Operative Summary. Dr. Ginsberg had sewn in a Neuro-Patch dural replacement. Was this what she meant by putting it back after? My surgeon did what he thought was the best course of action and who was I to argue?
“He probably threw that piece out,” Carmen said. “My surgeon said that was the best thing to do. My surgeon said it’s only going to cause problems later, so best to just cut it out and throw it in the garbage. I don’t have a plastic replacement. I did the right thing.”
What was she talking about? “Huh. That’s really interesting,” I said.
I wanted to punch myself. This was precisely why I had avoided speaking to other patients: They made me doubt my choices. There had been things I had learned early on—when I thought that education in the form of Internet chat rooms was the key to my recovery—that had put me in a tailspin for days. So I had adjusted, learning only as much about my condition as was necessary to keep me moving forward. I had put my future in Dr. Ginsberg’s hands and for my faith he had rewarded me with slow, meticulous work that left me with all my body parts moving and accounted for.
Speaking with Carmen was shaking my faith. I decided never again to compare my surgery and progress to others’.
11
To Pee or Not to Pee
Sometime in October, roughly seven weeks after I was admitted to Lyndhurst, I had my family meeting. Every patient got one, like having your day in court, a formalized day of reckoning. At the meeting was my entire team of practitioners: Dr. Zimcik, Dr. Emm, my PT Amanda, OT Heidi, Lorna (who was the acting nurse in Rumy’s absence), two residents, and Rich. The team would present the fruits of their labor and, together with the fruits of mine, reveal their findings. Based on that shared information, I would be given an approximate discharge date.
When I entered the room, everyone had big smiles for me, which made me nervous. What could they possibly tell me about my progress that I didn’t already know? Who better than me knew how I was doing?
We went around the table.
Amanda: “Ruth is getting a much better sense of where her feet are.”
Lorna: “Rumy says Ruth no longer requires pain meds outside of Tylenol.”
Dr. Zimcik: “Bladder premonition shows signs of improvement.”
After each positive report, I felt an uptick of giddiness. I became the clown in the room; that patient who gave the team hope, reminded them why they got into the care business in the first place, made them laugh and look at each other as if to say: “See? I told you! She has the best attitude!”
I was then given two pieces of news: My tentative discharge date was set for November 8 and also, to my great surprise, I was awarded a one-day pass home for Thanksgiving. I hadn’t been home since August. I looked at Rich. My faith in the goodness of the universe was fully restored. This was the best, the happiest, the most unexpected surprise I’d had in ages and the joy that came with that surprise lasted a full eight seconds before Dr. Zimcik interrupted.
/> “Great! So let’s discuss what’s next. We think you should bring your IC kit home with you.”
I couldn’t believe this was coming from Dr. Zimcik, my friend. To say I felt betrayed by her is not being too dramatic. She knew how hard I had been working to get my bladder back in good working order. She knew me well enough to know that taking my IC home with me would only mean conceding defeat.
I took a deep breath. I had cried every single day since my surgery, but this was no time for tears. I made eye contact with everyone in the room.
“I am not going home with an IC.”
Everyone was still smiling, leftovers from the last little joke I must have told.
“That’s just in case,” someone—a doctor or a nurse or a resident, maybe even Rich—said.
“I’m not going home with an IC,” I repeated. “Oh, I’m going home, all right, just not with an IC.”
I was small, I was funny, I shared all my chocolates and flowers with the nursing staff, I played Michael Jackson loudly in my room, I told good stories and listened to sad stories. I could tell I was one of those patients they talked about on their coffee breaks. I knew some of them had looked me up on the Internet Movie Database (IMDb) and then possibly went home and told their children that they were caring for an actress who was in this show or that show. I could feel myself being assessed with fresh eyes. But I didn’t care. I was not going home with an IC. I abruptly wheeled out of the room. The meeting was over.
When I was little, the story goes that my grandmother bought me a beautiful pair of flowered underpants. She put them on my bed and told me that I was not allowed to wear them until I learned to use the washroom on my own. At that point in my life, I had yet to speak a single word, which made my father wring his hands with worry. He begged my mother to take me to the doctor, but she refused.
Walk It Off Page 13