Beauty in the Broken Places

by Allison Pataki

  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.

  Chapter 33

  Dave had always been the one to check the mail. In our modern age of email and text messages and voicemail, I’d come to think of “snail mail” as largely irrelevant, a pile of twenty tedious pieces of paper—credit card solicitations, flyers announcing a new neighborhood pizza joint, bank statements that could just as easily live online—for every one piece of meaningful correspondence. And so, over the years, I’d willingly ceded that chore to him. It’s not something we’d ever talked about or decided on, but as is so often the case in any relationship, we’d settled into our way of doing things, divvying up the minutia of our day-to-day life together. Dave didn’t mind checking the mail, I did, so that was just something that fell in Dave’s column—it was one of his things, the way taking out the garbage and washing the dishes were his things.

  And so, that winter, as all of Dave’s “things” shifted from his column into my already-packed column, checking the mail became yet another task to think about in order to keep our day-to-day life afloat. I resisted it at first. I dislike checking the mail on a good day, but in recent months—the stroke, emergency medical transports by land and by air, extended ICU and hospital stays at Fargo and Rush and RIC, dozens of doctor’s appointments, therapy sessions, blood-clotting tests, scans of the heart and brain and pretty much everywhere else, medication lists, Dave’s surgical heart procedure, a pregnancy, a delivery and subsequent hospital stay, a newborn baby with her own medical visits, and so much more—the act of sorting and responding to our family’s mail had gone from inconvenient to outright harrowing.

  It was piles and piles and piles of paperwork. Bills that felt like a fresh punch in the gut each time. Insurance fine print that was long and confounding, often filled with pushback that sent a new surge of fight-or-flight hormones churning through my already-hormone-addled body. Disability applications that required my time and attention. Doctor visit summaries and reminders for so many upcoming appointments. An application to get my breast pump reimbursed. Not to mention all of the paperwork that comes with getting a new life up and running: birth certificate application, Social Security registration, her own health insurance coverage, and neonatal appointments. As twisted as it sounds, even the well-wishes and baby gifts arriving in the mail from generous friends and family began to feel like a burden as I thought: Unwrap another package, recycle the packaging, and then write another thank-you note.

  Each day it arrived, a never-ending barrage of crushing mail, more paper to add to the pile. I was so tired of it. I was tired of fielding these bills, figuring out which ones needed payment and which ones required me to call the insurance company and wait on some automated line until I finally got redirected to a person with whom I could argue (plead? cry? reason?) to get Dave the treatments he so desperately needed. My to-do list was already too long, but each piece of new mail inevitably meant some new chore, and it was I who would have to manage it.

  My way of coping with this was, for a time, to simply stop checking the mailbox altogether. Avoidance. Denial. Walk right past the building’s mailroom and don’t look in. If I didn’t see the piles of paperwork, I didn’t have to do the paperwork. Right?

  So then one day, after about a week of not checking the mail, I skulked reluctantly into the mailroom, my tail between my legs, unhappily facing the reckoning. I slid the key in and opened our mail slot, bracing for the backlog. I looked in. Nothing. Empty. Not a single piece of paper. Not a single bill.

  Hallelujah! I thought. Halle-freaking-lujah! Maybe things are finally calming down? Maybe I’m finally getting a handle on things, maybe I’ve finally caught up on our piles of paperwork? Not having mail was the single best thing that had happened to me all day.

  “Oh, hi, miss?” Just then an attendant who worked the daytime shift of our building’s lobby was peeking into the mailroom. “You’re in apartment 201, right?”

  “Yes,” I answered.

  “Your mailbox was overflowing. The postal carrier couldn’t fit any more mail in, so he moved all of it.”

  “Moved it?” I asked, my giddy relief evaporating. “To where?”

  “Here.” The man handed me a sticky note. On it was an address. “This is the USPS processing facility for this part of Chicago. You’ll have to go there and collect your mail.”

  I took the note, my stomach dropping. How fun it would be to take my infant out in the bitter cold to wait in line at a USPS processing facility in the hopes of finding piles of bills and other medical paperwork.

  “You had a lot of mail,” the man said after a moment, a friendly smile on his face.

  “Yeah,” I said. “We get a lot of mail.”

  “Probably best, then, to check it every day, so the mailbox doesn’t overflow.”

  * * *

  —

  Have you ever wanted to just trade lives? To say: I can’t do this anymore; can someone take over for me? Can someone else carry this for me, even just for a day?

  That was how I felt in some of the moments of the deepest dark. I was fried from tending to the baby while trying to stimulate Dave’s brain and recovery while also keeping track of everything at home—keeping the fridge stocked and the prescriptions filled and the laundry clean and the car battery from freezing and the dog walked (even though it was single digits outside), all while trying to keep my own career afloat. And if Dave was not going to return to work, then hadn’t I better begin seriously thinking about how I would become the primary breadwinner? It was not pretty.

  What I needed was sleep, and support. I sent out an SOS message. My mother-in-law delayed her planned departure for Florida and stayed with us downtown for a week to help with the baby and Dave. She cooked us lasagna and rocked the baby to sleep and spent hours with Dave, diligently setting up his home office with him, approaching the tedious task with a patience and a calm that I simply no longer had in me. Louisa is like a talisman, one of those holy objects whose very presence in a room keeps the dark spirits at bay. With Louisa in our home, I felt a light and a love that I just did not have when we were home alone.

  As Louisa left, my mom flew out to join us. She, too, is a bulwark, the rock-solid
support I needed right then. She made me coffee in the mornings and held the baby so I could nap. She walked our dog and stocked our fridge. She brought a fresh energy and positive outlook into our small, struggling family circle. One of my favorite photos of Lilly is from that week my mom spent with us in Chicago in January: it’s evening, and Dave is holding his daughter in his lap, smiling, while my mom looks on in the background, the loving grandmother holding her glass of red wine. The dark night outside the window does not appear as terrifying with my mom in the room, smiling, looking on.

  After that, my aunt Christine came. She had not been to Chicago in years, and so she inspired us to get out and see the city. We went to museums and braved the cold to take walks. She cooked for us and opened up about the hard times in her own life, and we had a wonderful visit as she got to know Lilly. Marya came back, too. I just needed support and community and I needed my best friend, with whom I could be entirely raw. Every morning that Marya was there, I would stumble out into the living room, Lilly on my hip, and I would say: “I love waking up and knowing that you are here.” I needed to feel like it was not all resting so squarely on my shoulders. I needed to feel like I could speak and have someone there to listen and to answer and to understand. One day, when our car was towed and then died at the tow lot and I had to trek out in the snow to go jump it and drive it back home, it came as no small relief that I could leave the baby at home, warm, with Marya.

  There is one day that sticks in my memory. Dave and Lilly and I were driving to rehab in the morning. I had noticed that, since the stroke, Dave never answered his phone. And not just that—he never checked email, text messages, or voicemails. He just did not care. So, in the car that morning, I urged him to listen to his voicemails. “Oh,” Dave said, listening to one of the recordings. “That was RIC. My rehab this morning is canceled.”