Beauty in the Broken Places

by Allison Pataki

  Chapter 19

  Timing is so important in the recovery after a traumatic brain injury. On the one hand, every neurologist will tell you that “it is going to take time.” And yet, you want to work quickly, as it’s a race to recapture as much as you can as quickly as you can while the brain is still in a state of healing. Time becomes this shifty entity, at once both ally and enemy.

  Once Dave was medically stable and the threat of a repeat event was ruled out, his team agreed that it was important to get him into an inpatient rehabilitation facility where he could get right to work on rebuilding and replacing and reconnecting those dead and damaged neurons. We considered a few options, but really the answer was clear to us all from the beginning—for recovery, Dave would go to the Rehabilitation Institute of Chicago, ranked the nation’s number one rehabilitation center for more than twenty consecutive years. It was incredibly fortuitous that such world-class rehabilitation existed in our city, ten minutes from our apartment.

  As thrilled as I was to be getting out of the frenetic, sterile, nerve-addling ICU, I was anxious about the transition to a place where we would have a lot more autonomy; I was reluctant to be giving up the round-the-clock medical care and monitoring that made the hospital both a blessing and a curse. I worried that the care these expert ICU nurses had been providing would fall largely on my shoulders. I worried that I would forget when Dave had to take his medication or that I wouldn’t know what to do in case of an emergency. A task as simple as shaving confounded me—Dave was in no way capable of handling a razor, so who would shave his face?

  Most intimidating to me was the daily monitoring of Dave’s heart. Since the stroke, Dave had been wearing a heart monitor. We suspected that the PFO (the hole in Dave’s heart) had played a part in the circumstances that led to the stroke, and Dave’s cardiologist wanted to be sure that there was not a larger problem like an arrhythmia (irregular heartbeat) or another possible congenital heart deformity. Dave was to wear the monitor for a month, and the electrodes had to be changed each night before bed. They were red and black and white and had to correspond to particular wires and particular places on Dave’s chest. The battery had to be charged each night and replaced each day. The monitor communicated with a recording device, much like a cellphone, that had to be within ten feet of Dave at all times. In the more mobile setting of rehab, where Dave was shuffling from room to room for various therapy treatments, this would mean the device would have to go everywhere with him. Dave was in no way capable of remembering something like this, so it fell on me. I brought a pouch from home that Dave could wear around his neck each day with this small heart monitor inside, much like a tourist would wear to keep money safe while traveling in a foreign country. I cannot tell you how many times I trailed behind him, waving that pouch like a mother brandishing her kid’s forgotten homework as the school bus pulls away: “You forgot your heart monitor! Put your pouch around your neck!”

  Dave and I went together in the ambulance from Rush to RIC. He was still in a state of complete amnesia, and so even though I tried to explain the situation to him, he did not understand why we were in an ambulance. Strapped into a wheelchair, leg and arm restraints in place to ensure he would not get up, Dave panicked. He kept trying to break free from the straps, and, given his strength, he was coming perilously close to doing just that. He kept reaching for the door of the ambulance to open it.

  “What are you doing?” I asked, my voice growing shrill. It was just Dave and me in the back of that ambulance, and I would not be able to restrain him if he managed to wriggle free.

  “I don’t want to be here. I want to go home,” Dave told me, looking distrustfully around the inside of the ambulance.

  “I know you do, and we will go home soon, I promise. But first we have to go to rehab. We are going together; I will be with you. It’s the best rehab facility in the country, and we will be in the best hands possible.”

  Though I had told him this a dozen times, Dave looked at me now, trying to understand this information. He shook his head and began a fresh round of writhing and squirming, his hands working to undo the straps that were barely holding him in place. “No, I want to go home.”

  Trust me, so do I, I thought. We were on the highway in rush-hour traffic. I was six months pregnant. What would I do if I had to physically restrain my husband, who weighed almost twice what I did? How would I keep him from opening the door and jumping out onto the highway?

  “What do I do?” I asked the driver, my panic rising by the second as my husband thrashed and jerked around in the wheelchair. The driver was on his cellphone, speaking to a friend in colorful language about the physical attributes of a lady friend of his. He did not seem to hear my desperate entreaties. He kept chatting away as Dave kept writhing and fighting against his restraint straps. Please please please just let us get there, I thought. The whole situation was so absurd that I wanted to laugh and cry at the same time.

  Finally, after contending with the traffic jams, we made it, pulling up in front of RIC with Dave still fastened in his wheelchair. I told him for the twentieth time where we were and why we were there. I told him he was at RIC to get the best rehab treatment in the world.

  As we settled Dave into his room, I looked around at our new home base. As a nurse reviewed the inpatient information with us, a middle-aged woman, another inpatient, wandered into our room, clearly disoriented. A moment later a kind nurse came in and guided her out. “We don’t go into other people’s rooms,” the nurse said gently as they walked away. I slid the curtain across the room’s entrance, trying to gain some privacy for us. I looked back toward Dave, and around at our room.

  As we sat there, the extent of Dave’s handicaps settled in my gut with a harsh new clarity. The bed restraints, the wheelchair that they were insisting Dave use anytime he left his room, the safeguards in the bathroom. How depressing would all of this be for Dave if and when he realized just how incapacitated he was? How would day after day in this sterile, hospital-like environment cause him to feel anything other than utter despair? He was supposed to be working as a doctor, operating on people at that very moment, living a full and vibrant life as a healthy thirty-year-old with a wife and a baby on the way, and, instead, he was the youngest person (by decades) on a floor filled with people who were either physically or mentally incapacitated. How damn unlucky was he?

  This is something I have never shared—not even with my mother-in-law, or my mother, or even with Dave. In that moment, I looked around the space with even wider eyes; I looked with horror at the hooks on the ceiling, from which they secure safety straps for people who can’t walk. I had the horrific, blood-chilling thought: What if Dave tries to hang himself?

  Unpacking there, though trying to remain outwardly upbeat for Dave, I had a feeling similar to the one I’d had when we first arrived at the Rush ICU. In Fargo, I had been looking ahead to getting Dave back to Chicago because it would mean he was stable enough to travel and it would mean getting home, back to loved ones and familiar territory and Rush’s world-class neurology ICU. Then at Rush I had been looking ahead to getting Dave to RIC because it would mean he was medically strong enough that we could stop worrying about him dying, and we could focus on his getting better. We could start the work of bringing his brain back online.

  But here we were. Settled in at RIC. Now what? Dave’s amnesia and helplessness were still our reality. There was nowhere else to go, nowhere else to be but in that dreadful reality.

  Chapter 20

  Hudson Valley, New York

  September 2011

  I was told so many times things like “Your wedding will be a blur,” “You won’t remember a thing,” and “It will go by so quickly, it’ll be over before you know it,” that I made a concerted effort not to allow the weekend to go by in a blur. The yogi in me worked hard to “be present” for all of it, and our wedding was quite a bash.

 
It was funny how Dave had strong opinions about just a few, very specific things: the texture of the bread during the dinner (I’m not kidding, the man takes his bread very seriously, and he did not want the rolls to be too crispy), the forks we registered for (as he said, “We’ll be eating off these forks for the rest of our lives, it’s important we get this right”), the seating arrangements, and a few other things. He sweetly requested that I wear at least some of my hair down as opposed to an upswept look because that is how he prefers it normally. But other than that, he let me and my mother run with most of the planning, and we did, and we had a blast doing it together.

  There was one minor mishap a week before the wedding, when the stylist from the big, fancy New York City salon gave me “highlights” that turned out to be a single tone of platinum blond. I am a natural brunette with dark brown eyes; I can pull off natural highlights that fall somewhere in the family of “golden” or “honey,” but this was “porn-star meets Playboy bunny,” according to one rather honest friend. That, I could not pull off. Three appointments later, only after returning to the guy who had originally done my highlights as a teenager in upstate New York before I got all fancy, I got my hair back to some semblance of a naturally occurring color, albeit still a touch lighter than my original preference.

  The wedding day itself went off without a hitch. The ceremony was in the local Catholic church and the party was in the backyard of my childhood home, where we danced all night surrounded by hundreds of loved ones. One of the primary reasons we had wanted to get married so close to home was because my grandmother, about to turn ninety-six, was largely housebound by that time. She had waited long enough for this day and there was no way I was going to let her miss it. For our wedding date Dave and I had chosen the same date on which Grandma and Grandpa had gotten married nearly three-quarters of a century earlier, and I wanted to make sure that she and I got our dance together.

  My favorite part of the entire weekend was seeing Dave standing at the altar. We had not done a “first look” beforehand, so en vogue these days, and the church was the first place we saw each other on our wedding day. I remember feeling so nervous standing with my dad outside the door to the church in the moments before I walked down the aisle. My stomach felt like I had swallowed an entire bowl of goldfish as I watched my sister and sister-in-law and best friends process past in their gorgeous bridesmaid gowns.

  And then, the “Wedding March” began to play, my dad led me inside, and I saw Dave. All the nerves—poof!—were gone in that instant. Our eyes locked. This was what it was all about. I was marrying this man. Everything else, everyone else, vanished. As I walked down the aisle, I saw Dave fighting back tears. “I couldn’t believe it, that first glimpse I had,” Dave told me later. “I couldn’t believe that I was seeing you in a wedding dress and that you were walking towards me.”

  When the priest had asked us if we would be writing our own vows or saying traditional ones, we’d decided to go with the traditional. The writer in me believed that there was no way to top those age-old words, uttered on that happiest of days since time immemorial. What could be more powerful than the words “I, Allison, take you, David, for better or for worse, for richer or for poorer, in sickness and in health, for as long as we both shall live”?

  I meant those words. I did. I did not just blindly recite them; it was a commitment I was thoughtfully and purposefully making. I’d put more thought into that decision than any other in my life. And I realized that all of those contingency clauses, the words like “in sickness and in health,” would have their day of reckoning. I had seen both my grandmothers nurse my grandfathers at the ends of their lives. I knew that would happen to Dave and to me at some point. But as I stood there at the altar, I thought we were looking at, say, seventy years before that was upon us. “For as long as we both shall live.” We would live a long time. At some point in the distant future, I would be required to summon fortitude and accept days that would not be fun, days of caregiving for an ailing and elderly spouse, or vice versa. At the end of a long and happy and full life, about the time our grandkids were making their own wedding vows—I would have a chance to live out the truth of these vows.

  I had not realized that it would be so soon, on the near side of thirty.

  But on that day we didn’t think about any of that. When I look at pictures of us from our wedding I see only smiles of innocence and confidence and joy, two people so totally consumed in that present elation, a pair who think only with excitement about everything life will throw at them.

  Chapter 21

  Sitting in one of the hospital rooms, Dave asleep in the bed between us, I confided something to my in-laws. “All my life,” I said, “I’ve had this nagging fear that I was too lucky. That somehow, at some point, I would have to pay for the fact that I’ve been too lucky.”

  It was not the first time I had confessed this fatalistic fear. At Yale, one of the school traditions is the secret societies of senior year. You are “tapped” at the end of junior year to join a group with fifteen of your classmates. The group meets every week in a private home on campus, and one of the traditions is that each member of the group shares his or her “biography” with the group. This is the chance to bring everyone into the story of your past and to explain what, up until that point, has made you the person you are. Participating in it, we all felt very serious and self-important, naturally. During my “bio,” I told the group that I worried that I had perhaps been too lucky—that I would eventually have to pay for the good fortune I’d so far enjoyed.

  Specifically, I believed that I had been too lucky to have found Dave so early. Ours had been an easy love in the sense that it had been the easiest thing in the world to fall in love and, so far, it had been relatively easy to remain in love. That’s not to say that our relationship was perfect. No, neither Dave nor I was perfect—far from it—and our relationship had its ups and downs just like all relationships do. But, so far, the moments of challenge or conflict had not proven insurmountable, and we had always come together to work through our differences. And so I felt like there was something I couldn’t quite trust about it; people did not get this lucky in their love lives, not on the first real try. They did not get the happy ending without a whole bunch of heartbreak first. I felt that I was doomed to be dealt at least one big doozy. True, there had been that guy in high school where the affection had been weighted a little more on my side, and that had been painful at times, but it had not been a full-blown heartbreak. I was Dave’s first serious girlfriend and he was my first deep and life-changing love—and here we were, still together. And having a baby! And here’s the kicker: I didn’t even have morning sickness. It hardly seemed fair.

  At college, I’d had the privilege of taking a Shakespeare seminar with the legendary Harold Bloom. Professor Bloom had told us: “Make no mistake, you will all have your hearts broken at least once. Whether it’s a lover or a child or a parent or a friend—somehow, your heart will be broken.”

  Up until that point, I was realizing, I had enjoyed a pretty charmed life, a life free of major heartbreak. Two supportive and loving parents, still alive and happily married. The same for Dave. His mother had gotten sick with multiple myeloma, and that had been excruciating and frightening, an earth-shaking trial for the entire family, but Louisa had made a miraculous comeback from a diagnosis that could have turned out to be far worse. She was strong once more, in remission, and so even in that, Dave and I had counted ourselves incredibly fortunate. What’s more, we had close relationships with our siblings and plenty of wonderful friends. I loved my work as a writer; I felt like I got to wake up every morning and play make-believe—and I got paid to do it! I was young and healthy and in a marriage that was for the most part solid and happy, a bond forged in deep understanding and faithful commitment, in a shared history and significant experiences. There was no way to deny it: Dave and I had been remarkably lucky.

 
That was, until the stroke. As I confessed that fear to Louisa and Nelson, they both returned my gaze with knowing nods. They confessed that they, too, had had the same thought. For Dave and me, but also for themselves.

  Now, from our view in the hospital room, staring at Dave, we no longer felt so lucky. We’d been owed one? Well, we’d gotten one. The big doozy I’d been bracing for—it was here.

  I remember that during our first weeks at RIC, I was sitting with Dave in a speech therapy session when he was asked to name as many fruits and vegetables as he could in one minute. He could come up with three. He was asked to provide a woman’s name that begins with each successive letter of the alphabet. He could not get past the letter “A.” My name begins with the letter “A.”

  We made Dave a little calendar that we would look over, hour after hour, day after day. We cut out a Post-it that said “TODAY IS:” and we would slide that over the new square on the calendar at the start of each new day. Throughout the day, we would reference that calendar, reminding Dave where he was and why he was there. We would go over photos with him and review names. We would ask him trivia; he somehow always retained all the sports trivia in his head. Priorities, I guess.

  We watched DVDs, too, specifically home videos that his brother and father had brought in. At one point, I asked Dave if he wanted me to bring in the DVD of our wedding. “No,” he answered, quietly.