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, after 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.
With the end of the holiday season, I no longer had the company of my own family, either; I no longer had the frenzied distractions of reunions with friends and the frenetic busyness of the happy holiday season. My parents and siblings and closest friends were all at least seven hundred miles away. As we cleared up the Christmas decorations and pulled out our heaviest winter coats, I realized that I was suddenly very isolated and very much alone with my baby and my teenager-like husband.
As we settled in for a long, cold, dark Chicago winter, I began to see our new reality through a film of despair. I was lonely and I was frustrated and I was pale and I was fed up and I was tired; “weary” is probably a better word.
And I was scared. Terrified. It was impossible to know which among these new characteristics of Dave’s were here to stay, what was simply Dave’s new permanent personality. Our new normal. If I’d had to put some number on it, I would say that Dave was 75 percent back to himself. And that was great—I knew we had so much to be grateful for. But that 25 percent was what had made Dave Dave. That was the part that had made him a unique man, my man, the man I loved. I didn’t know if that 25 percent would ever return. I wept to Margaret over the phone: “I don’t know if I’ll ever get my husband back.” Even though my husband was physically there, in the apartment, home every single day, I had never felt so alone.
Dave remained positive in his outlook—but even that, I worried, came from a lack of depth and understanding—a childlike and incomplete grasp of the grim realities surrounding him. He remained confident that he would meet the very high bar of resuming his work as a surgeon. Rush remained incredibly supportive of Dave and his goal to return to the residency. We met with Dave’s residency program director, and she was adamant that Rush would make it work, that they would welcome him back into the program in the class one year behind his original class. Dave’s mentor had issued an open invitation for Dave to shadow in his clinic as soon as he was ready to ease back into the hospital environment. They offered us support while also being respectful of the privacy and time that Dave needed to heal. They offered to let him attend conferences, participate in research, work in the scope labs, and do whatever else he needed to do to facilitate his transition and return.
And yet I worried that perhaps we were all deluding ourselves in thinking that Dave could return to such an arduous lifestyle. I wanted to be supportive and hopeful, to believe in my husband, but I also could not ignore the fact that he was sleeping fourteen hours a day. That he had to be reminded to take his keys with him when he left the apartment. How would he possibly get back to a place where he could operate on a living human?
Dave noted and received my frustrations with frustrations of his own. He countered that I had no idea how hard it was for him to simply get through the day. He reminded me that it was he who had suffered the stroke, not I, and so could I please stop acting like this was so hard for me? We had very difficult moments, and I was absolutely not surprised in the least when I heard that the divorce rate for couples going through traumatic brain injury was as much as three out of four. (Why do Dave and I always find ourselves in situations with such high divorce rates?) Dave was justified in feeling the way he felt, as I was justified in feeling the way I felt. There was no easy answer, no easy way to forge a path through the darkness.
Because the recovery from a traumatic brain injury is not linear, it will play awful games with your mind and your soul. One day Dave would be showing evidence of great progress; I would allow myself to feel tingles of hope, and to believe that perhaps we had turned a corner, and then the next day it would feel like Dave had taken huge strides backward. The best analogy I heard to make sense of the situation came from Lee Woodruff: “Traumatic-brain-injury recovery is like one of those freaky carnival fun-house mirrors, where the image shifts on you. One minute, things look almost normal, and then, all of a sudden, boom!, the image morphs on you, and everything is distorted and unrecognizable and downright frightening.” Exactly.
There was something else that was weighing on me: I had a book launch coming up. After having two consecutive New York Times bestsellers, I had been so excited to launch Sisi. I loved this book, I felt a deep attachment to the characters in Sisi and the historical figure upon whom this novel was based, and I wanted to do her story justice. I had worked so hard to launch my career as an author. Would a flop at this crucial juncture send my entire career onto a downward trajectory? Would I be disappointing people—readers? my publisher? my agent? myself?—if I could not give this my all?
Book launch is a demanding and hectic time under the best of circumstances. My previous two launches had been chaotic whirlwinds, and I had had neither a newborn nor a husband recovering from a stroke with which to contend. Here, in my new reality—my Target pajamas stained with various bodily fluids from my newborn, struggling to make time for a cup of coffee or a shower while begging Dave to put a reminder in his iPhone to take his medications—I looked ahead with dread and panic.
“It will be good to have something else to focus on,” a well-meaning friend said about the upcoming launch. “Something to look forward to. An opportunity to celebrate you.”
But I did not feel like being celebrated. I was just so tired. So very weary.
“My reality these days is wiping poopy diapers and attending rehab,” I wept to Lacy one day over the phone. “How can I possibly pull it together for a book interview or a launch event?”
I was not certain that I could. I was not certain that I had it in me to get to the next day, the next diaper, the next rehab appointment, much less not break down in tears on national television. How could I sit there and smile and shake hands at some fancy book event when I had so many bigger things going on in my life that were draining my mental, physical, and emotional energy?
It was not about the glamorous book events or the chatty interviews, really. It was a reckoning on my part with my ability to keep moving forward in a life that now felt so scary and uncertain and entirely altered. It all felt so discordant, like a big fat lie—I did not want to make book-party small talk; I did not want to pretend in front of all of those people that I had it together and that things were good. We’re doing just great! I have it together! Want to read my book? I was having a hard enough time just keeping myself together in front of my husband and my baby. There was no part of my show that I wanted to take on the road.
“You are in your ocean time,” Lacy told me, switching gears from butt-kicking agent to compassionate confidante and loyal friend. When I asked her for clarification, she added, “You’re out in the middle of the ocean. You’re too far along on the journey to see the land behind you, the shore from which you left. But you’re not close enough to see the land to which you will arrive. All you can see right now is the ocean, and all you have to go on at this point is faith. All you can do is keep swimming until you begin to see the outline of the next shore.”
Could I keep swimming? Did I still believe that there was a shore in the far distance? Some place to which I could arrive and feel safe again? Perhaps even happy? I did not know.
Insomnia, my nemesis from past seasons of stress, returned. “Brain spin” is what my mom calls it; in spite of how exhausted I was, my mind would reel all night long with fear and anxiety. Lilly was sleeping like a dream—twelve hours a night—but I sure wasn’t. Each morning, crawling out of bed and looking ahead to another long and excruciating day, I felt shakier than I had the day before.
I was suddenly rail-thin. People marveled, tossed out well-meaning compliments on how quickly and completely I had shed the baby weight. “What is your baby weight-loss secret?” they would ask. Stress! I would think. It’s remarkable, really, what stress will do for the waistline.
I was so weary of hearing comments like “I could never do what you are doing” and “I don’t know how you’re doing it.” Each comment like that, well-intentioned as it was, only seemed to shine a fresh spotlight on how undesirable my life and our circumstances were. It was like a compliment that highlighted the pain. I was also tired of hearing “We’re worried about you” and “You can’t do this alone.”
If there had been a transcript for my thoughts when I heard remarks like that, it would have gone something like this: First of all, I’m not “doing it,” whatever you think “it” is that I’m doing. I’m barely coping. I’m getting through each day by fighting back tears and meltdowns, and then at night I thrash around in bed wrestling anxiety and fear and sadness and anger. But not sleep. Sleep is impossible, even though I need sleep. Even though I’m more exhausted than I could have ever imagined possible. So, please, don’t commend me.
Second, you could do it. Because it’s not a choice. This stroke was foisted on my family. It’s not like we chose it and then decided whether or not we could deal with it. We have to deal with it because it’s our reality. And if it was your reality, you would have to deal with it, too. I don’t ever wish this on you, but if you had to do it, you would have to do it, just like I have to do it. And OK, if you’re worried about me, then pick up some groceries for me, or come over and hold my baby so I can take a shower or a nap. I’m not doing this alone by choice; I don’t want to be alone. I’m asking for all the help I can. I need help. So any help you would like to offer would be appreciated. But don’t tell me you’re worried, because then, being the pleaser that I am, I will worry that you are worried. That shifts the burden onto me to now have to somehow reassure you that I’ll be OK and that you can stop worrying. See how that happens? And I don’t need that right now.
Fortunately, I never said any of that aloud, at least not in that raw of a delivery, but in some of my lower moments, that was how I felt.