Dave and I have always written back and forth to each other—hard copies of letters, little notes on a big day, emails, texts, and so on. My favorite aspect of Dave’s gift to me on holidays is usually the card, because he always takes the time to write a long and thoughtful note. I cannot tell you how often during those years of residency my notes from Dave had some variation of the following:
I am so sorry that this has been so hard for us…
It is especially when things are so difficult…
Thank you for staying…
This is so hard…
I am so sorry…
Dave considered quitting, on several occasions. They all do—that’s something I learned from every single other wife I spoke with. They all go through those valley moments when it just does not feel like it is worth it. But Dave stuck with it. Dave has never been a quitter.
But you know what else he’s not? A good bluffer. And that was another challenge he faced. A senior surgeon once told Dave that he needed to “work on his poker face.” Dave was far too earnest, far too quick to reveal when he did not understand or agree with something. Maybe it’s the politician’s blood in me, but I generally have an easier time navigating murky social situations. I can put on a good face and work within most interpersonal dynamics. Dave cannot. There is no guile in him. It’s both his best quality and at times his most crippling handicap. It’s a plus that he’s so honest and pure and genuine—one never wonders where Dave stands—but it can be a major handicap in a work environment filled with big personalities, opinions, and egos.
I remember one time in medical school, a few of the savvier students had started a trend of baking cookies for senior attendings. Dave thought this was an egregious and transparent display of kissing up. Dave is not much of a baker, so I offered to bake cookies that he could take into the hospital, but he flatly refused. We went to his parents’ home and told this story to his brother, Andy, who was also in medical school at the time. Andy smiled and shrugged. “I baked cupcakes and brought them in.”
“You did?” The disbelief was evident in Dave’s voice.
“Heck, yeah, I did!” Andy said proudly, no trace of regret in his tone. “You’ve got to play the game.”
This was a game that Dave did not know how to play very well. Dave’s just not an adept horn-tooter; he’s not a savvy self-promoter.
Writing, in large part, got me through those tough early years of residency when my husband was often gone or else home but tired or stressed or agonizing over something—a deadline, an upcoming surgical case, an unhappy higher-up, a research paper. I do not know how I would have coped if I had not had something to do at home that I loved so much. When I slipped into my writing groove, the hours flew by. I was incredibly productive those first few years of Dave’s residency. I finished The Traitor’s Wife and wrote The Accidental Empress and Sisi and several other manuscripts, along with scores of articles and blogs and guest pieces. Left at home with my imaginary characters, I was free from distractions, free to play and create and research and pour myself into not only writing but launching my career as a writer. I felt guilty at times that I loved my job so much and was able to do it at home in yoga pants while Dave was so miserable at the hospital.
When I ran out of steam and needed a break from writing, I would explore Chicago or go to yoga or meet up with girlfriends or my sisters-in-law or walk my dog. Penny, my daily companion, was another invaluable source of comfort during those years.
When Dave had long shifts or rotations at a hospital out of town, I would decamp to my in-laws’ place in the suburbs. I had gone from being surrounded by friends, near my parents, near my sister, near my family’s home, near my hometown where it was not possible to drive to the market without seeing ten people who had known me since childhood, to being seven hundred miles away from all of that, and with a husband who was often depressed or completely unavailable. And I struggled with that. But the Levys were so welcoming and loving that their place became a second home for me.
At that point Andy was the equivalent year to Dave in his own residency, and he was weathering many of the same challenges and frustrations. Andy and Dave would commiserate, and so would Erin and I.
I remember hearing that Avicii song, the dance hit with the lyrics “So wake me up when it’s all over. / When I’m wiser and I’m older.” I pulled out my phone and sent a text message to Erin. “I feel like this should be our theme song during residency. Just wake me up when it’s all over.”
If Dave was not going to quit—and believe me, I reminded him countless times that that was an option—then there was nothing we could do but keep moving forward. We just had to get through it, together, taking refuge in the belief that it would someday get better.
Chapter 31
Every other year, the Harvard–Yale game is played at Yale, and Dave and I meet friends and family on the East Coast, where we go to the game and then stay in New York for Thanksgiving with my family.
At five months out from the stroke, November marked our first time flying with Lilly, and Dave’s first time flying since that horrible June night.
When I booked the flights in October I was deeply concerned—would it be too difficult, flying with both a five-week-old and Dave?
But, by November, Dave had improved enough that, rather than adding to my list of concerns, he could help me with the baby, getting her and all of the luggage and baby gear through security and onto the plane. Because his stroke had occurred on a plane, I was having some jitters, reliving the horrible memories. I checked the pupils of Dave’s eyes several times in the air to make sure there was not any asymmetrical dilation going on. He wore Lilly in a baby carrier for much of the flight, and the ride was smooth in every sense of the word.
We drove to New Haven for the game and were surrounded by loved ones in what is one of our favorite places on earth. Many close friends had visited Chicago and had an idea of the progress Dave had made, but other friends were seeing us for the first time since the stroke, and they all gave Dave big hugs and expressed their relief at how well he was doing. Lilly napped for most of the afternoon as she was passed from arm to arm. Dave had a beer at the tailgate—his first beer since the stroke. It was a sunny, chilly New England fall day, like so many other football games that we had enjoyed together over our eleven years as a couple. I thought many times throughout the day how grateful I was that Dave was there to enjoy it with us.
That night we went to one of New Haven’s iconic restaurants, Mory’s. The college tradition is to order big “Mory’s Cups,” large silver chalices that you pass around a big table, each person making a toast before taking a sip of the punch. We all made toasts; Dave’s was a bit shaky, a combination of goofiness and a genuine expression of his love for our new daughter. We laughed over past memories and shared our joy in the fact that Dave was there.
I knew how long a road we still had. I knew that, in so many ways, Dave still was not himself, certainly not the indomitable version of himself that had once thrived on this campus. A dear friend admitted as much to me, saying, “People keep commenting how great it is to see Dave doing so well, but I think people who don’t really know him that well don’t realize that he’s still not the old Dave.” She was correct.
That’s the thing about brain injury—it’s invisible. Dave looked like his old self, and so people who saw him would breathe a sigh of relief and say how great it was to see him, back to himself. Dave did not bear any scars, did not walk on crutches, showed no outward signs to testify to the wound from which he was very much still healing. It was like the time a work colleague of mine inquired after Dave on a phone call, asking: “Where is he right now?”
“At rehab,” I answered.
“How does he get to rehab?” this colleague asked.
“A car,” I said. “Someone has to drive him.”
“But…how does he
get into the car?”
“He walks,” I said.
“Oh! He can walk! That’s great, I had no idea he was doing so well.”
Throughout Harvard–Yale weekend, that was the common refrain: an expression of relief and happiness to see Dave doing so well. Back to his old self.
We knew, however, how far he was from his old self. He could walk, yes. He looked like himself, yes. But that had never really been the issue—at least not since the earliest days in the ICU when he had recovered much of his motor ability. Others could not see Dave’s brain, could not understand that Dave’s injury was not physical so much as it was cognitive and behavioral. Others did not know, as I knew, how easily Dave still fatigued and how much sleep he still needed. How passive he was at times, unable to make a decision or initiate an action or remember a scheduled appointment. That he still struggled to remember formerly easy things, like the content of a recent conversation or a new acquaintance’s name. That he still found it challenging to do something as simple and seemingly second nature as log in to his online bank account or respond to an email.
But that weekend did remind us that we had cause to celebrate. That weekend, being surrounded by those who loved and rooted for Dave gave us hope for his continued recovery. Even just having Dave there, in that place where our love story began, was a cause for celebration. Had Dave died, that campus, the place of so much joy, would have become a place mired with heartbreaking memories. How bright will seem through memory’s haze, those happy, golden, bygone days. So goes the Yale alma mater. Literally every corner of that campus and its surrounding city is redolent with memories of us. I would never have been able to go back without seeing the locations of our courtship, reliving the beautiful beginning of our shared journey. But time and change shall not avail, to break the friendships formed at Yale. It was true; we had not been broken. At least, not yet.
Chapter 32
Neither Dave nor I was nostalgic about wishing 2015 farewell.
We spent Christmas with Dave’s family in Chicago, and New Year’s out east with my parents and our friends Charlotte and Steve, who had a baby girl just five weeks younger than Lilly. As four new parents, we did not even attempt to stay out until midnight on New Year’s Eve; we hugged Charlotte and Steve good night by nine P.M. and went our separate ways to carry out our respective newborn bedtime routines. Once the baby was down, Dave and I watched a movie and got into bed a few minutes before midnight, with Lilly sleeping in the next room.
“I’m so happy that this year is over,” I told him as I clicked off the light. I was ready to bid 2015 adieu, for sure. I asked Dave what the highlight of his year had been. “Not dying,” he answered.
“Huh.” I whistled, releasing a slow exhale. “Yeah, I guess that’s about right.” There was no topping that. I shut my eyes and wrapped my arms tighter around Dave, giving thanks that I had my husband beside me at the end of that year filled with so much pain and beauty.
* * *
—
When we got back from that New Year’s trip, we moved out of Dave’s parents’ home in Lake Forest and into our apartment in downtown Chicago. The place that had served as a crash pad for me during the weeks that Dave was an inpatient—a lonely place to which I returned to sleep each night before going back to the hospital and rehab—had never felt like our home, and Dave had never even lived there, but it was time to officially move in. Dave had completed his outpatient therapy at RIC in the northern suburbs; he’d graduated out of physical and occupational therapy, and would now just be continuing with cognitive therapy a few times a week at the RIC campus downtown. Dave’s parents were heading to their home in Florida for the winter; after six months of devoting their time and care to us, it was time for them to move forward. And we, as our small little family of three, had to move forward, too. To settle into our new normal.
It hit me hard. That first week we were back in January, the sky was dark gray and full of snow, and temperatures did not climb above single digits. Chicago’s legendary wind is worthy of its formidable reputation; the ice-chilled air can cause physical pain to any parts of the body that are exposed. As venturing outdoors was not an option with a newborn baby, the three of us were stranded inside a new apartment that still felt unfamiliar. Because we had had to wait for the New Year for Dave’s health benefits to replenish, we had not been able to schedule any upcoming outpatient therapy, and RIC in Chicago was booked solid through January. Dave would have a few hours of therapy all month, but the rest of the time it was up to me to stimulate him and fill his days.
In the first few months after the stroke, it had been easy for me to summon optimism and hope and energy. Nobody understood everything about Dave’s injury or, therefore, his recovery. We had so many factors working in our favor and Dave woke up strong, so we had every reason to hope for the best. Setbacks in the beginning did not rattle me all that much—the stroke was still so recent, so fresh. I had the cool calm that comes from being in the eye of the hurricane (and perhaps even from being in a state of semi-shock); I had the blinders on that do not allow you to focus on anything other than the immediate needs of the crisis. All of that “This is a marathon, not a sprint” and “It’ll be a long road” felt vague and theoretical; I was fresh out of the gate, surrounded by a constant circle of loved ones, and I still had the energy of the sprinter.
Several months out, setbacks still were not that scary. They could be brushed off as the expected bumps in the road that constitute traumatic-brain-injury recovery. I filed it all under the “Two steps forward, one step backward” and “It’ll be a roller coaster” talk. I was living with my in-laws, we still had a ton of support around us, and I still had some reserves of energy and optimism. And while my body was growing ever more unwieldy, there was not yet a newborn baby to sap my time or focus or strength.
But here, alone, in the deep freeze of dark January, adjusting to life with a new baby and facing a new year—the year in which Dave had set the goal of returning to his demanding work as an orthopedic surgeon—it was troubling to see that many of Dave’s deficits persisted; it was hard not to worry that these lingering deficits might in fact be here to stay, that they were predictive of where things might settle out. Perhaps we had gotten all the recovery we could expect. Perhaps we had reached the dreaded plateau. No one could tell us, because no one knew.
I noticed the deficits most glaringly in Dave’s lack of motivation and initiation. The old Dave had routinely worked for more than fifteen hours a day, entirely of his own volition. How many times had I begged him to stop working at night or over the weekend or on vacation? No one had needed to light a fire under Dave Levy. Now, however, Dave was lethargic and laid-back and entirely unlike his formerly Type A, overachieving self.
This was like some new, morphed, entirely unrecognizable version of the man I had known and loved. When I asked Dave’s therapists about this, I learned that this apathy had to do with Dave’s still-inadequate executive functioning.
Executive functioning is the last thing to develop in a mature brain. Most of us do not develop executive functioning until our early twenties, which is why teenagers are so often thoughtless, messy, forgetful, and in need of so much sleep. When I examine my own past, I can notice that there was in fact a marked difference between myself as a senior in college and a senior in high school. I had pegged it as a function of maturity and time, but I could now concede that, yes, this “executive functioning” I was hearing about must also have been a significant factor.
Dave had lost the higher functions of his brain and, with that, his executive functioning—his ability to be the self-starting, responsible manager of his own life as an adult. In the earliest days of his injury, Dave had resembled a newborn baby: entirely helpless, sleepy, lacking in all language, unable to perform the most basic of daily tasks. Then he had grown into an oversized toddler: impulsive, unpredictable, still helpless, but sweet. Now, af
ter seven months of recovery, Dave’s brain had matured enough to put him at about a teenager—my husband was now like some petulant, sleepy high school boy.
This was a tough place for us to be. He was lucid enough to resent my urgings (nagging, as he called it), but not sharp enough to initiate and take over all of his self-care. I struggled to navigate the dual roles of both wife and caregiver. I did not want to have to nag him, and I certainly did not want to argue with him over whether he needed my help.
Previously I had been patient and positive. I had rolled with the setbacks and known that we were still very much in the midst of recovery. But now my patience began to fray as I acknowledged that I did not know where this recovery would take us. Was this going to be my life forever? Was this going to be my marriage forever?
I had a newborn baby to take care of, and I was physically, emotionally, and mentally exhausted after months of nursing both my husband and our baby. On the one hand, Lilly was a dream infant—she was sleeping through the night and she was healthy and happy and had a very easygoing disposition. In many ways, we joked, she was the best-behaved member of our household. But, still, I was taking care of a newborn. That’s a full-time job, and that alone can make the days feel long and tedious, no matter how much you adore your little one.
Plus, with the move back downtown, I had gone from having the support and company of my in-laws to running a household entirely on my own. I had no loving family member around to whom I might hand the baby over if I absolutely needed a nap or a shower or a quick mental break. Nelson and Louisa were planning their relocation to Florida; Andy and his family had by this time moved to Colorado for Andy’s fellowship. Mike and his family lived in a suburb about forty minutes outside of Chicago, but they had two babies under one and a half and were understandably overwhelmed in their own busy lives.
Beauty in the Broken Places Page 17