Love You Hard

by Abby Maslin

  I do know this story. In fact, I’m beginning to think I might know all his stories. Lately, it seems as if TC is struck by one of these epiphanic returns of memory every day. At first it was exciting for me too. I’d sit patiently, mindful of his aphasia, and allow him plenty of time to find the words he needed, looking forward to hearing something I’d find equally exciting. But as I soon discovered, they were all old stories—moments we’d discussed countless times over the last eight years.

  With practice I’ve become better trained at handling the resurgence of these memories. When a memory returns, it seems to help TC if he can describe it aloud. Not for my benefit, but for his. The more he can hear, remember, and retell his own stories, the stronger and more cohesive his self-narrative seems to become. He is relearning his own life. An autobiographical historian.

  The most helpful thing I can do is to continue playing the role of engaged listener (even if I’m already well versed in the story I’m about to be told). I’ve learned not to cut him off as he gets under way. Interruptions only block the information his brain is trying to process and share.

  Still, I’m human. And after a year of caregiving, what I’m thinking on the inside is not always as charitable as what I present on the outside. Sometimes I catch myself wishing that his life still held some mystery for me. Isn’t there a story in there I haven’t heard yet? Isn’t there anything new to unearth about the old TC?

  There have been rare occasions, of course, in which he’s surprised me by sharing some unknown fact or anecdote, but new stories contain their own problems. If the details sound a little unbelievable, I wonder if he’s making it up or perhaps combining two separate memories. Then again, maybe he’s right and I’m being unkind to doubt him. It’s so hard to tell.

  It reminds me of a Lakota Indian tradition that I teach each year to my students. For generations, the Lakota have been keeping track of their people’s history by creating something called a winter count. The winter count is a piece of buffalo hide on which the Lakota draw a pictograph showing the most significant event that happened that year—a flood, a battle, the death of a tribe member, whatever it may be. A single count can represent hundreds of years of history, and the person in charge of protecting the count is called the keeper. Bearing witness to TC’s stories, I realize that’s what I’ve become: the keeper of TC Maslin’s life story. I tell it to him. He tells it back to me. We exchange it back and forth a dozen times more, until we both have it memorized. The story of his life is now imprinted on my soul. I might just know it better than my own.

  * * *

  Being a good listener to someone with aphasia is no easy task. Like everyone else, I need to be cognizant of giving TC long pauses and not offering the words he is searching for. His therapists in Halifax were unanimous in their insistence about these habits. But when you’re with someone all day, every day, it’s hard to resist the temptation to correct their occasional mistakes. Commonly, TC confuses the correct unit of time (offering year when he means month, or Tuesday when he means Sunday) or substitutes the wrong verb. I watched that book, instead of, I read that book. Pronouns and prepositions present the most challenging beasts of all, and naturally they’re used in English all the freaking time.

  Unfortunately, the difference between under and above is significant to most folks, as is the difference between he and she. These tiny words are the hardest errors for TC to identify in his own speech, and they are the ones that inevitably cause the most confusion. Given my previous track record of correcting him, I generally keep my mouth shut.

  All in all, I’m doing my best to check off the boxes of a compassionate caregiver, even if I don’t necessarily feel like one most of the time. There are moments I want to scream, “GET TO THE GODDAMN POINT.” Or be able to mumble a casual thought without repeating it three more times just so he can understand it. Sometimes I just want to drive in the metaphorical fast lane instead of slowing down for his benefit. Fast is my natural mode. Slow is very hard for me.

  Anytime I catch myself in these thoughts, I wonder how I might be handling things if the situation were even harder: if TC had ended up paralyzed, confined to a nursing home, or in a vegetable state. It’s not unreasonable to consider the range of possibilities. After all, it is only by a divine miracle that we can explain his survival at all.

  There are millions of caregivers all over the world taking care of people with disabilities and I don’t see them screaming their grievances into the cosmos every day like I am. Do they want to go fast too? Does this pace of life have them going out of their minds? Or have they found contentment, that elusive state of acceptance I’m still waiting to be cloaked in? If so, I am ashamed to acknowledge they are better people than I am. I’m just hoping one day to earn a place among their ranks.

  * * *

  Across town from where I dwell in self-pity, my father continues to be relegated to a hospital bed. The status of my dad’s health is complicated, as evidenced by the chart that hangs outside his hospital room, hundreds of pages long after nearly six years of medical interventions. The bowel obstruction surgery was a short-term success but responsible for a myriad of later complications, including pneumonia and heart irregularities. Although he is rarely awake during my visits, I come when I can, usually late at night after finishing dinner and tucking in Jack.

  I bring my curriculum books and ungraded papers and sit quietly in the plastic recliner in his ICU room. Am I always in this room? I catch myself wondering. Is it my destiny to be always in this room?

  It’s hard to remember a time when my life didn’t revolve around the gray divide between life and death. For in all my recent memories, I’ve been stuck here, in an earthly purgatory, shackled to the mental and emotional chains of hospital life. And for as long as I have to return here, to this place, this room—I am certain I’ll never be completely free.

  It makes me think of the way my mom used to grip my wrist when she’d walk me across the street as a kid. She was firm, hurried, dominating. I knew she was trying to keep me safe, but it felt as if she was snatching my body away, reclaiming it as her property. I hated it when she grabbed my wrist. Often I’d yank from her clutch, shaking out my arm as I matched the pace of her walk. I was defiant in proving I could cross safely without her grasp. And that is how I feel again: the hospital grabbing me in its clutches, making me always return to it, no matter how determined I am to live outside its walls.

  Looking at my dad, it’s hard to understand why we are here anymore. He is painfully thin, thinner than he’s ever been, and weaker too. I stand beside his bed, gazing down at his yellowed skin, the salt-and-pepper stubble that outlines his chin and mouth. He’s been at Georgetown for three months already, as long as TC’s total hospitalization, but it’s not nearly the same. Three months into TC’s hospitalization and he was relearning to walk. He was preparing to come home again. So far, there is no talk of home for my dad. For now, the goal is just to stabilize. Always, we’re just trying to stabilize.

  As I walk back to my car this night, I pause in the darkness of the hospital parking lot. My dad is never coming home again. The thought lands with absolute certainty. He’s never getting better. This isn’t the same journey we were on four years ago during the time we awaited his transplant. There was still hope back then, a solution to the thing that was causing his sickness. Now we are looking at a total system shutdown. His body is overwhelmed. It’s been working for so long just to stay alive, and now each system seems to be quitting in protest.

  None of the doctors I’ve spoken to are willing to see it this way. Their job is to address only one organ, one piece of the puzzle at a time, not to read the message being delivered as a whole. To some extent, I can’t blame them for this limited view. It’s simply a reflection of our modern medical system.

  Their job is just to fix. To keep fixing, and meddling, and intervening. No doctor is going to walk through the door and affirm what
I already know to be true: that my father’s body simply doesn’t want to live anymore.

  It’s like using Scotch tape to mend the hull of the Titanic. The problem is simply too big, too comprehensive, for a series of little fixes.

  I am heartbroken, of course, but not because my dad is dying. His dying is not a revelation to me. I am heartbroken because he’s being made to do it with such little dignity remaining.

  It takes every ounce of energy to conjure up the dad of my childhood: Marty’s round face, grinning on the dance floor of some family wedding. His signature dance move: the side-to-side hip shake as he pumps his fists in front of him.

  My dad: bright-eyed, responsive. Sitting on a lounge chair, judging my sister and me as we cannonball off the swimming pool diving board, the Newsweek in his left hand competing with us for attention.

  It is cruel irony that life keeps transforming the men I love into other people. I’ve been missing my dad for so long, and he’s never even left.

  * * *

  The toddler who turned two in the blink of an eye is about to blow out the candles on another year. Jack will be three in a few short days, a fact that leaves me breathless, suddenly cognizant of all I’ve missed during this distracted last year.

  “TC, how many pizzas should I get?” I call to him across the picnic blankets that lie spread on the grass of the National Mall.

  He scans the bodies of our friends, family, and the cluster of small children gathered around a box of juice pouches. “Maybe seven?” he shouts back.

  We’ve planned this party together: a casual afternoon at the Museum of Natural History, followed by pizza and cake on the Mall. No gifts. No fuss. Just a beautiful fall day spent with good friends and sugar-fueled children.

  I look over at Rachel, pregnant with her second child, and Mladen, chasing down Luka as he bolts for more juice. I look over at Claire, kneeling in front of two-year-old Juliet, as she smooths down her daughter’s hair, and Vanessa and her husband, JR, who stand in conversation, each with a watchful eye planted on their two young kids.

  This is a special time in life—this moment of parenting young ones. For all the complaints we all file—the lack of sleep, the fussy eaters, the television set always to Elmo and Dora—it is undeniably, inexplicably laden with magic. It is the soft mush of wet kisses in between the hard nights of labor and the incredible moments of watching their faces register new thoughts. It is the rare victorious moment when your husband runs in with a bucket, seconds before the vomit arrives.

  My own son is now running sprints between two tall trees. He’s wearing a T-shirt that was mine in elementary school and shouting “HIYA!” as he tries to get Luka’s attention.

  TC needs to know what kind of pizza Jack wants, and he does his best imitation of a jog in order to catch up with him. “Ah-ha!” He laughs as he tackles Jack and spins him upside down.

  That TC is able to physically participate in raising Jack is a miracle I process with astonishment. His body is not fast, nor particularly coordinated, but the constant walking he’s done since we returned to the city has helped him improve his gait. What leaves me wonderstruck, however, is the strength of TC’s emotional bond with Jack. He is committed to being there for every small and big moment with an even greater ferocity than he’s brought to his brain-injury recovery. He drops Jack off at school, packs his lunch, sits with him at urgent care, and even volunteers to chaperone Jack’s school trips. There is nothing TC won’t do for Jack. And the fact that he’s still alive is perhaps the greatest piece of evidence to prove that.

  After the seven pizzas have been devoured and the juice pouches have been emptied and flattened into trash, I pull out the two Tupperware boxes of lemon cupcakes I’ve prepared.

  “Get close!” I direct. “We’re gonna sing to Jack!”

  Adults and kids huddle around the picnic blanket as Jack revels in his moment of attention. TC scoops him up and pulls him to his waist. He holds him there as we begin to sing.

  As the words to “Happy Birthday” resound in chorus, I watch my husband quietly murmur the words. For whatever failings we’re guilty of committing against each other, we have one monumental success in which to take pride. We are good parents. And not even brain injury has been able to take that from us.

  CHAPTER 24

  November 2013–February 2014

  Golden-red leaves lay scattered across the dirt path as we balance casserole dishes filled with hot mashed sweet potatoes in our arms. Although Thanksgiving is normally celebrated at my parents’ house in Southern Maryland, we are grateful to my godparents, Jim and Moira, for relieving us of our hosting duties and even more grateful for a Thanksgiving feast located right across Lincoln Park.

  Because it is a holiday, the park is empty. Where two green jungle gyms sit, usually filled with the noise of happy, screaming children and a flash of color swooshing down the plastic slide, there is nothing but swaying branches and empty playground equipment, the brisk chill of an early-winter wind.

  “Don’t trip,” I call behind me to TC, whose own arms are weighed down with my special dish, a cholesterol explosion otherwise known as macaroni and cheese. I am constantly nervous about him falling over the raised tree roots in the park. But after hundreds of walks across this park, his brain has memorized exactly where to lift his foot.

  Any meal at my godparents’ house can be counted on to be a well-orchestrated, delicious event. Moira is the quintessential southern hostess. She’s a born-and-bred Georgia peach who never fails to deliver a home-cooked meal that her guests remember for days. Likewise, Jim, my father’s oldest friend, is his own type of food connoisseur, with an appetite for the hearty kinds of dishes he grew up eating in Oklahoma: fried okra and casseroles made from Le Sueur peas.

  This Thanksgiving dinner begins with hors d’oeuvres in the living room—pimiento cheese and rosemary wafer crackers Moira has carefully chosen from Eastern Market, making sure to select something new and interesting for us all to try. If my dad were here, he’d be back in the kitchen putting the finishing touches on raw oysters or petite crab cakes, adding the mandatory Southern Maryland flair to our meal.

  But we are quieter than normal this year, feeling guilty to be enjoying this beautiful food and one another’s healthy company while my dad lies alone in his hospital room. The five of us—the three Maslins, my mother, and my sister—made it over to Georgetown for a visit in the morning, but none of us could fathom spending the entire day there. And truthfully, I can’t stand the idea of Jack spending one more holiday inside a hospital.

  Our annual family tradition at Thanksgiving is for everyone to go around the table and make a toast, sharing something they were particularly grateful for during that year. As we stand and hold hands around the table, Jim leading the charge, my dad’s absence is felt once more. When he was well, my father was, among many things, always the jovial host—the unusually adept speech giver, guaranteeing both tears and laughter from his audience. He set the bar remarkably high, none of us wanting to follow his lead.

  When it’s my turn to share, I give a small smile around the table and offer a simple “This year I am grateful just to be gathered with all of you.”

  I am grateful. Of course I am. But also weary. Inspiring words no longer come easily. With this toast, I’ve certainly done little to channel my father.

  But then TC stands up. I look across the table, where he’s been seated next to my mother. He begins to speak humbly, a bit self-aware, as everyone quiets down.

  “This is . . . this, umm, thank you to Jim and Moira for hosting us.” He turns to acknowledge them both. “It’s been a big, really hard year. Sometimes I can’t believe we’re here. Thank you to everyone for every- everything you do to help us. And thank you to my beautiful wife, Abigail.”

  At which point he looks at me, pulling in his top lip to control his voice. My face responds in mirror image, prepared to be rip
ped open by his words.

  “Honey, you do everything. You know that. Thank you for saving me. I wouldn’t be here without you,” he finishes.

  Everyone pauses out of respect, letting TC’s words and the act of this spoken declaration settle in the air. Then they lift their glasses to clink them in celebration.

  “Well said, TC,” my mom assures him triumphantly.

  I look over at Jim, the quietest among us, who sits with tears in his eyes as the rest of us sip from our glasses. Jim has always respected TC, but their relationship has become especially close since the assault. He can hardly mention that August day without his eyes welling with tears, overcome by his compassion for TC’s struggle and the knowledge that Capitol Hill, the neighborhood Jim loves so vehemently, is also the setting of the event that changed TC’s life.

  Technically, the cheers are for me, but we’re really cheering for TC. For the bravery it takes to stand up and speak with that changed and imperfect voice, now always searching for the right words. We’re cheering for his victorious return back to the world of the living and for his unwavering determination to find his footing in it once more. For the words of love he has just gifted me. In front of an audience, no less.

  In recent weeks, I’ve been doing a better job of noticing and appreciating the little moments in our interactions. Sure, TC and I are a long way from making gaga eyes at each other across the table, but something different is emerging—a quiet and gentle acceptance of all that has transpired. A mutual desire to pour water where flames once burned.

  Suffering is effusive in this world. It would be easy to argue that our fortune ran out the night of TC’s assault, but that is not how I see it. We have been lucky in life—and we continue to be so. It reminds me of what Klu told me in the hospital, about all the patients with brain injury she’d encountered. In her eyes, TC and I were not unusual or particularly unfortunate. Brain injury did not make us special. It simply made us like everyone else.