Beauty in the Broken Places

by Allison Pataki

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  After several weeks of inpatient therapy at RIC, Dave’s entire rehabilitation team convened to discuss the situation and present us with their prognosis. At RIC they call it the Family Huddle. The morning of our Huddle I was petrified. What sort of a life would they predict for Dave, and therefore my family and me? How would I accept this new life, whatever they expected it to look like?

  We assembled in a conference room. My mother-in-law, who had recently fallen on the stairs at home and broken her tailbone (Yes, actually. Was fate playing some sort of sick joke on our family?), could not sit down, so I remember her standing beside the table, hovering, while the rest of us sat there, tense and stone-faced.

  The medical team began by presenting the assessment of Dave’s cognitive therapists. They ran a test on Dave every morning called the Galveston Orientation and Amnesia Test (GOAT), a series of very basic questions that demonstrate how aware a person is of his or her surroundings. What is your name? What city are you in? When is your birthday? And so on.

  A high-functioning adult scores somewhere between 80 and 100 on the GOAT. A person in a state of amnesia scores below a 75. To be considered out of amnesia, one had to score a 76 or higher for three consecutive days on the GOAT.

  When Dave arrived at RIC, the rehab team told us, he had scored an 8 out of 100. They told us about his difficulty with short-term memory. His executive-functioning capacity was wiped out. This affected everything from his ability to initiate actions (I should do something about these smelly armpits by showering; I should eat the food on this plate in front of me; I should take this empty plate and put it in the dishwasher) to planning complex sequencing (first I’ll wake up, then I’ll get out of bed, then I’ll go to the bathroom, then I’ll get dressed). Executive functioning is what allows an adult to manage his or her own life, to accomplish the tasks of daily living as an autonomous and productive individual, what allows us to be the “executive,” or the boss, of our lives. It’s stuff that we do every single day, without even thinking about it.

  Dave could not be expected to handle any of that on his own—the simplest activities of daily life required constant prompting and reminders. For example, he had to be told to put his sneakers on; then he had to be told to tie those sneakers; then he had to be told to stand up from the bed and go to whatever appointment he had to go to.

  Additionally, since the stroke had targeted his thalamus, the portion of the brain that regulates the body’s sleep and wakefulness, Dave’s brain was telling him at all times that he was incredibly tired. This was why he needed so much sleep, both at night and with multiple daytime naps.

  And yet, as we sat around the table that day at the Family Huddle, the medical team told us that their goal and their expectation was that Dave would make a full recovery. Factors such as his youth, his therapy plan, and his “pre-morbid condition”—that is, the state of Dave’s functionality prior to the stroke—were all working in his favor. Dave had been very high-functioning in his former life, and so his brain had had an above-average number of neurons firing to do his work as an orthopedic surgeon. He had been fit and strong and highly engaged in a rich and complex life, full of family and friends and activity. These facts, coupled with his young age and his young brain’s ability to regenerate itself, would be Dave’s greatest assets. If he wanted to, they suspected, Dave would even be able to return to his residency as an orthopedic surgeon. They gave the target date of July 2016, one year in the future.

  The room fell silent for a moment as we Levys looked at one another, a few of us with our mouths hanging open. We were elated, of course, but also slightly incredulous. The man I had just left in his room had to be told to drink the water that was in his glass. He could barely hold a pen steady enough to sign his name.

  I believed in neuronal plasticity and I believed in Dave, but I also had the image freshly seared into my mind of Dave nearly dying. And then the reality that we had expected him to be in a vegetative state. Returning to orthopedic surgery? That was a line of work that I myself could never manage, and I’ve never had a stroke! And yet Dave would get back to that place?

  This is what I wrote in my letter that night:

  Dear Dave,

  The family conference to get your prognosis was today. They anticipate you making a full recovery.

  Yay.

  Wait, really?!?!?!?

  YAY!!!!!­!!!!!­!

  Yay, but how? You don’t even know where you are. A full recovery? No really, how?

  Chapter 26

  The transition from RIC to home really frightened me. RIC was a safe and contained cocoon, a controlled environment, while the real world was far from it. At RIC, I could be the supportive spouse and cheerleader, but the pressure of Dave’s daily medical well-being did not rest squarely on my shoulders. Nurses monitored his vitals and made sure he took his pills and did not fall in the shower. His handful of attempts to shave himself had left him looking like an extra in the Twilight movies, but at least a legion of fantastic (and medically trained!) caregivers had been nearby to make sure he was not doing serious damage. Going home would be full of unknowns—suddenly everywhere I looked, I saw causes for alarm: staircases, front doors, car doors, a bathtub.

  In some ways, our situation was more precarious than if Dave had been physically weaker. Because he was strong physically but not mentally, he was much more of a risk to himself. It was not unlike taking care of a toddler in the sense that we needed to do much of the thinking for him and keep him contained and safe—but our toddler weighed two hundred pounds. What if he decided to take a walk and ended up at the highway? Who would help him shower? Remind him to take his pills?

  I was now in the third trimester of my pregnancy and on a tight deadline for my final book edits before the upcoming maternity leave. My agent had been a stalwart support and a faithful friend; my editor had been kind and understanding, as had everyone at my publishing house. I could have asked for an extension on the project and they would have supported me, but I needed to do this. For one, I had never in my life missed a deadline, and I’ll be damned, I did not want to miss that one—the book was important to me, and I had worked really hard to get it ready for publication. And what’s more, I wanted to get this book turned in before the baby arrived. As crazy as things already were, I knew they were only going to get crazier when a new little life joined our family. Currently, it felt like every moment of my day was devoted to taking care of Dave, but soon enough it would be devoted to taking care of Dave and a newborn. I needed to finish this book; I needed to do this for myself.

  After several family powwows, we decided that Dave would transition to daily outpatient rehabilitation at the RIC branch in Northbrook, about thirty minutes north of Chicago. He would go through as intensive a program as was available—full days, five days a week. While he was there, we would live with Dave’s parents.

  I resisted this at first. I was about to bring a baby into the world and I wanted to be in my own home, not sleeping in Dave’s high school bedroom. After the chaos of Fargo and the ICU and the inpatient stay at RIC, I was craving some return to normalcy. I was feeling the very real, biologically induced urge to set up my nest and prepare for the baby’s arrival in my own space. And yet, Dave’s parents made the very compelling case—and I came to agree—that I needed the support that would come from being surrounded by family.

  Adjusting to our new normal in the northern suburbs, we settled into Dave’s bedroom, surrounded by childhood sports trophies and high school photos. As truly lovely as my in-laws are, I was cognizant of the fact that I was in someone else’s home. I was using someone else’s kitchen and laundry room and bathroom. I was in someone else’s space. And yet, if I had to be in someone else’s home, I could not have asked for a better situation. My in-laws have always said: “The term ‘in-law’ is just a technicality; we love you like a daug
hter.” They are family in all the best ways of the word, and they allowed us to feel completely at home.

  There, in Dave’s hometown an hour outside Chicago, we spent the last days of the worst summer of our lives. On the back porch, I edited my book to the sound of my father-in-law clipping the flowers. In the afternoons while Dave was at rehab, once I had finished working for the day, I would take the dog for a long walk or swim laps in a nearby friend’s pool. My mother-in-law and I split cooking duties while Dave and his father split cleaning the dishes. At night, we would watch the birds at the bird feeder during dinner and then play a board game or cozy up on the couch and watch a television program before Dave’s very early bedtime.

  We took one very precious piece of cargo with us when we moved into the Levy family home. As we were preparing to leave RIC, I’d collected piles of letters and emails. So many of the people in Dave’s life had been in touch regularly since the stroke, writing moving and heartfelt notes that Dave could not even begin to appreciate—at least not yet. I gathered up all of these notes that had come into our home and to his brother and to his parents. Letters from former teammates and college friends, people who came out of Dave’s past to share stories of how he had inspired them or made an impact on their lives. My sister-in-law Erin bought a giant leather-bound book, and we put all of these letters into it, calling it “Dave’s Book of Fan Mail.”

  Dave sat down on the couch and read this book on one of the first days we were back home. It took him several hours.

  “What do you think?” I asked, watching as he leafed through the pages.

  “I’m tired,” Dave answered.

  “Is it hard to read it?”

  “Yes,” he admitted, his voice faint. His body looked deflated. He was moved by these letters, but reading them took a lot out of him. He did not feel like the man these people had known, the man these letters described.

  I felt similarly conflicted. It was inspiring and touching to read these words, yes. And yet I had to admit that there was a part of me that grew sad as well; all of these letters painted a picture of the man I had known and loved, a man who was no longer with us. I did not know if that man would ever come back.

  Other things scared me, too. In fact, if I let it, worry could have wrapped its suffocating cord around me at all times. There was the time when Dave slipped going down the stairs and just barely grabbed the banister in time. The times when I would look over in the car and notice that he had not buckled himself in. There was the time when I did not like the look of a particular freckle and made him an immediate dermatologist appointment. I was petrified of losing Dave; I saw threats everywhere.

  One day Dave and I took a walk in the evening when he got home from rehab. Before we had even taken a hundred steps from the driveway, Dave turned to me and told me he was dizzy; he felt that he was going to faint. We turned around and headed back inside and got him onto the couch before I went screaming through the house calling out for Dave’s mother and father. “He’s not having another stroke,” Nelson told me, accurately perceiving the terror I was feeling. Dave was just dizzy from the bright sunlight and the heat and his eyes still being sensitive to so much stimulation.

  I realized that this fear might be something I would carry around with me for the rest of my life, a vestigial scar from an injury that bore no outward marks. I decided then that I would never again wear the same flowy top and yoga pants combo I had been wearing on that fateful flight on June 9; I felt too strongly that to step back into those clothes would be to step back into those moments, first on the plane and then overnight in the Fargo ICU, and those were moments to which I wished never to return.

  I knew that, going forward, my internal alarms would always be easily tripped, like when I made Dave uncomfortable by looking too closely into his eyes. “What are you doing?” he would ask, shifting under the intensity of my gaze. I was checking to make sure his pupils were not asymmetrically dilated.

  While initially we had feared that they would require surgery, Dave’s eyes gradually recovered on their own, with daily eye exercises that the neuro-optometrist assigned (we called them Dave’s “eye push-ups”). One day at the neuro-optometrist’s office, Dave had to put on a specific pair of glasses for one of his eye exams. They were funny-looking, with one lens colored red and the other lens colored blue. When Dave put them on he looked like a blend between Mike Ditka in his aviators and Elton John in his colored shades. I could not help but laugh, and Dave stole a glance at himself in the mirror. “Oh, good lord!” Dave gasped, laughing at his own reflection. The reaction was so quick, so natural, so funny, so very Dave, I could not help but rejoice. He had seen himself and had noticed how ridiculous he looked, and had shown a self-awareness that I had not yet seen. I laughed, not only because my husband looked absurd, but also because he was aware of how absurd he looked and could laugh about it with me.

  Slowly and with the daily exercises, Dave’s cranial nerve recovered its functionality and his eyes began to self-correct. His up-and-down and side-to-side gazes returned, and his double vision decreased. Before long, double vision was a problem only first thing in the morning and in moments when he felt fatigued. And his eyesight bounced back, nearly to the 20/20 vision he’d had since his laser eye surgery. We were thrilled that Dave would not need to undergo corrective eye surgery.

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  One day something happened that caused even Dave to get a bit rattled. It was late September. He came downstairs from having done some brain exercises on a computer program called Lumosity. He sat down on the couch to read a newspaper. He noticed, as he was reading, that the words became jumbled. “I couldn’t make sense of what I was reading,” he would say later. “It was as if I could understand each individual word, one at a time, but I couldn’t understand them all together in a sentence. I knew that something strange was going on; my brain felt weird.”

  After that, Dave felt drained and disoriented. He did then what he did so often when things were scary and overwhelming: he took a nap.

  We call that “the event” because, aside from the stroke, it was the most significant moment for Dave. He felt like parts of his brain were literally firing up after being dormant. Like his brain was going through growing pains as it came grumbling back to life. “For me, it was confusing, but I knew it was a good thing because it meant that I still had neuroplasticity happening.”

  There were a few other moments like that when his brain “felt weird.” He would complain of déjà vu or feeling disoriented. He felt, at times, like he knew what was going to happen before it did or that he knew what someone was going to say before he or she said it. These were all parts of his recovery and of the process by which his brain came back online.

  So much of the brain and its functionality remains a mystery, a nebulous unknown, even to the experts, and the same applies to the recovery from a traumatic brain injury. It is not like rehabbing a broken bone or a replaced hip; recovery from a traumatic brain injury is not linear, and it is not an exact science. Sometimes things got a bit “weird”; sometimes things even felt like they got a bit worse before we could see a marked improvement. It was all part of the experience of a brain healing itself, and it was all a bit scary and at times distressing and at times encouraging. We had to cling to the hope that, even in the moments of chaos and confusion—perhaps especially in the moments of chaos and confusion—the healing was happening.

  Chapter 27

  Chicago, Illinois

  June 2012

  When we moved to Chicago, I decided it was time to see if I could seriously make a career of writing. I was so fortunate to be doing some part-time consulting work for the clean-energy company my father and some of his partners had started, and that work combined with Dave’s modest salary as a resident was enough for us to live on. But flying back and forth between Chicago and New York was not sustainable for us, not if I wanted t
o really be a writer.

  After years of flirting with the idea, after years of pursuing fiction in my off hours, I told myself I had six months to get a manuscript finished and into pitchable shape. I loved writing. It was all I wanted to do. But could I find a way to make it a career? Could I be a writer and actually have that support our life? I did not know.

  I had spent the past four years sending my work to a literary agent, the fabulous Lacy Lynch at Dupree Miller & Associates, who had always been receptive and encouraging and supportive, but, just the month prior, her response to my entreaties had gone from “You’re not ready for me yet, show me your next draft,” to something to the effect of “All right, you are almost ready, let’s do this.”

  We made our working relationship official in May 2012. We went from “dating to engaged,” we joked, the month before Dave and I moved. I knew that Lacy could get my work onto the desks of interested editors—once my work was ready for that. I gave myself half a year to focus primarily on writing and pitching. If nothing came of it in that time, I would get a job selling yoga clothes or serving coffee and continue to pursue fiction on the side.

  That summer I raced to finish up my manuscript of The Traitor’s Wife, the historical novel I was working on about Peggy Shippen Arnold, the wife of Benedict Arnold and a significant character in his notorious treason during the American Revolution.

  Dave was going through a rough adjustment to residency. He was feeling unsure of his skills as a surgeon and having a hard time getting comfortable in the hospital environment after so many years as a student. Plus, we were all on edge about Louisa, who was going through intense treatment for her multiple myeloma. That summer my mother-in-law underwent a stem cell transplant that took her to death’s door. The procedure was horrific and the recovery was long and excruciating. There was a period of forced isolation when Louisa’s body was too weak to be exposed to the germs of others.