by Abby Maslin
I give him a moment, but he continues to struggle. “I’m not sure I understand,” I interrupt gently. “But I promise you, we really have nothing to eat here. We need some essentials to stock the house.”
I’m puzzled by his concern. Is this long list making him worried about money? That’s the only thing I can imagine the old TC chiming in about. He’s always been insistent about “sticking to the list” when we go food shopping.
But as I return to my jotting, his agitation grows. He snatches the pen from my right hand and uses the tip to point furiously to each of the items I’ve written down.
“I still don’t understand.” I shake my head. Something about this simple task is clearly not translating.
We go back and forth for a few minutes, exchanging confused and inquisitive glances. I encourage him to keep the pen and write down whatever he wants to add to the list, but instead he jots the word week with a question mark next to it. I stand up for a moment and go grab the calendar from the kitchen.
“See, this is today.” I point. “November nineteenth.”
He sighs exasperatedly and points to each of the remaining days of the week. “When does, when we . . . and then go? Soon?”
I frown, still puzzled and trying to guess. “When do we go?”
TC nods enthusiastically. “Yes!”
“From here?” I ask.
He nods once more, and my chest sinks. It occurs to me that he hasn’t understood the many conversations we had in the days leading up to his discharge from the hospital. While I’ve been talking at him, pouring buckets of information down his throat in an effort to get him excited for this temporary stint in the country, he’s been nodding obliviously in return, unable to make sense of my words.
“No, honey. We’re not leaving the cottage soon,” I explain. “We’re renting this place for six months. Until we decide what to do next.”
Not to be misunderstood, I take back the pen and paper. Stay until May 2013, I write. I push the note back toward him.
I watch as this information is processed on his face, the shift of his mouth as he bares down on his top lip, the hybrid of recognition and disappointment now registering in his eyes.
He nods. “Oh.”
I pause and walk over to place Jack on my lap. “So, is there anything you want from the store?” I ask.
He shakes his head no.
CHAPTER 15
November–December 2012
Life in the country is a montage of simple misunderstandings that masquerade as complex plotlines. Each one requires an exhaustive amount of time and effort to resolve. Thus far, TC’s aphasia is “mixed nonfluent” in nature, a combination of damage to both Wernicke’s and Broca’s speech centers that presents itself most prominently in his inability to understand oral language. And while that alone presents a major obstacle to communication, he also struggles to recall words and produce answers to simple, pointed questions, such as, “What did you have for lunch?” Of all TC’s language faculties, his understanding of written language seems to be the most intact. Minimal, but intact.
None of this is necessarily permanent, but the road ahead feels steep. I begin to imagine my words as jumbles of letters, scrambled and stripped of meaning as they fly through space, landing at random in that damaged region of TC’s brain where he is tasked with putting them back in order. How frequently he is successful, I have no idea. More likely he has resigned himself to my pointed directions throughout the day. Get in the car. Put on your coat. Sit down and eat. None of these commands signal action until he watches Jack and me do it ourselves, a cue to his brain that he ought to follow along.
I invest in one of those dry-erase calendars that sticks to the wall, and it quickly becomes the most important item in the household. Marked up with blue writing, it denotes our schedule for the day.
Wednesday, November 28: Drive to DC. 9:15 a.m. appointment with Dr. Makki, 11 a.m. appointment at Georgetown to remove staples.
Any additional tasks I need to complete that day, whether it be mailing bills for our home health equipment or trying to reach our court-appointed victim advocate, I leave off the calendar so as not to confuse TC. Too much information causes misunderstandings. I must be selective in what I share.
TC stands over the calendar each morning as I make breakfast, taking a long study of the day ahead. He seems to appreciate the clarity of information in its written form. If we are to make any sense of each other, we will have to rely on some imperfect combination of written words and abbreviated oral cues.
There is ample frustration in not being able to ask something as rudimentary as “Do you want to watch a movie tonight?” but there are also quiet moments I’ve grown to relish. At night I spy TC in the kitchen, drying dishes over the sink with his one strong arm as he practices the leg lifts his physical therapists have taught him. He is determined to get strong again, never to unfold the wheelchair that sits parked, unused, behind the front door.
These moments speak more clearly than any of our fractured conversations. His brain is working overtime to put itself back together, and I can’t help but laugh at some of his attempts—the triumphant look on his face the day he held up Jack’s toy fire truck and proclaimed, “Look, Jack. It’s a tire fuck!”
Jack, for his part, seems not to notice. The development of his own language is perfectly aligned with his father’s. I know it won’t stay this way forever, that at some point Jack’s abilities will likely surpass TC’s. For the time being, however, Jack’s favorite nursery rhymes and alphabet songs are good practice for TC too. I begin livening our long car rides with enthusiastic renditions of “Old MacDonald Had a Farm,” encouraging them both to sing along.
I am isolated down here, miles from Claire and Bethany and my closest friends, kept company by a newly two-year-old and a mostly mute spouse. But I am training myself to pay attention to the simple pleasures, the lightning bolts of motivation that convince me we can keep going: the sight of TC and Jack napping on the couch in each other’s arms, TC wordlessly pushing Jack in the swing in the yard; our family walks each afternoon, barely longer than a trip to the end of the driveway and back. This strange little life we are creating moment by moment—this is worth fighting for. This is how I will power myself through the long and uncertain months ahead.
* * *
Thanksgiving passes without much excitement. After offering to host the big meal (a gesture to honor TC’s favorite holiday and what I hope will be proof that I have a handle on everything), plans were dissected in secret e-mails between our parents, who feared I was only adding to my already overflowing pot of responsibility. But TC was insistent on preparing the Thanksgiving turkey, and so I clung to my hosting duties with forced confidence, certain he would need assistance but never quite imagining myself prepping the bird before TC brined it, plucking feather remnants from its pink, taut skin.
After kissing my remaining ties to vegetarianism goodbye, I add defeathering to my growing list of newly acquired skills. I am now a professional mousetrap setter, a skilled garbage collector, a family financier, and a masterful form filler-outer. With minimal assistance, I have clumsily waded through all the tasks I once depended entirely on TC to manage. More than three months since his injury and we are not yet bankrupt, starved, or institutionalized. I’ll wear that accomplishment as a medal of honor. My own Purple Heart for caregiving.
It’s a strange boost of confidence, knowing I am capable of tackling each of these tasks. I feel oddly grateful to be learning these skills now, instead of forty or fifty years down the road, after decades of being dependent on a spouse. But with that said, I am still plagued by the uncomfortable, nagging feeling that I am now the mother of two, not one. It’s a notion that implodes me with guilt. Whatever truth there might be to the reality that I am now TC’s mother and not his wife, I’ll admit it to no one.
“That’s such a nice offer,” I s
ay convincingly when our well-meaning families offer their babysitting services so we can partake in a “date night.” But the idea secretly weights me with dread. The idea of a date night implies partnership—an exchange of words, eye contact, and mutual interest. But TC is not yet ready to play the role of my partner. He’s fatigued and overwhelmed by all the new information he must integrate in his healing brain. The constant demands of recovery simply do not allow him to be attuned to me or anyone else. It’s too much to ask of one healing mind.
As painful as it is to try to hold a conversation with my husband over the breakfast table in the morning, at least Jack is there for us to focus on, so we don’t have to sustain indefinite eye contact or feign romance. The two of us sitting in silence over candlelight only promises to force an intimacy that feels awkward—a pointed reminder of our individual loneliness. But how do I tell people, particularly my in-laws, that there’s nothing I’d enjoy less than an evening alone with their son? Excepting the hours TC is at therapy, we are always together, a reality that overjoyed me in the initial weeks but has since proved to feel suffocating and even more isolating.
The quiet moments between us after Jack goes to bed are deafeningly quiet these days, with me mostly carrying on conversations with myself.
“Are you tired?” I find myself asking again and again.
“Can I get you a glass of water?”
TC will nod, sometimes attempt an appreciative facial expression, but mostly he is exhausted beyond belief.
Intimacy is missing from our lives at this point, but it’s low on the totem pole of priorities. No one asks me about sex: whether we’re having it or not, whether I miss it or not. But I’m sure they wonder. And the lack of talking about it only makes it harder for me to acknowledge the topic myself.
It’s been four months since anyone has touched me in a way more intimate than a quick hug. I feel myself growing more starved for intimacy and touch with each passing day. TC’s body, now transformed by a bevy of marks and scars too textured and fresh to be mistaken for any childhood accident, is a constant reminder of my own vitality, the life coursing through my veins. I couldn’t recognize my own need to be touched until there was no one to touch me, nor my desire to live a life in motion until I became forced to sit absolutely still.
The longer I delay it, the more anxious I become about having sex with my own husband again. One night, after I’ve put Jack to bed, changed out of my own clothes, and brushed my teeth, I decide it’s time. Sex is a nonnegotiable on the checklist for a normal life. And I so desperately want to be normal again.
“Hi,” I say shyly, getting in bed and turning on my side to face him.
He looks surprised. “Hi,” he says, putting down the pad of paper and pen with which he’s been trying to journal his own emerging vocabulary.
But I don’t feel normal. As I offer my body to this new, strange person, I feel nervous and embarrassed. I haven’t considered the technicalities of disabled sex, but leaning over in bed to timidly kiss TC, my body is quickly informed that any physical gesture will have to originate from an entirely new playbook. Even his face, limited in mobility by the residual paralysis on the right side, makes the act of kissing a robotic dance—lips partially moving, tongue unable to advance. If he cannot feel my touch pulsating through one half of his body, I don’t know if I can even offer enough stimulation to elicit a sexual response.
In a split second, my head becomes filled with new and sudden worries about whether sex is even a physical possibility for us anymore. All the time I’ve spent worried about our broken communication and I’ve barely paused to question the practical functioning of TC’s brain-injured body.
Unable to clear my head of such thoughts, I resolve to keep trying.
“Are you OK?” I whisper in a low voice.
“Uh-huh,” TC replies, his voice empty of both enthusiasm and discomfort.
I take this as a signal to carry on, slowly undressing myself as I move on top of him. Hovering over his weakened body, my own slight frame feels monstrous and cumbersome in comparison, filling me with a sense of unwanted dominance and masculinity. When we finish, neither of us feels genuinely satisfied. Just relieved to have fulfilled our duties to completion.
The encounter leaves me emotionally void, feeling more like a sexual aggressor than an enthused partner. Is this the way things will be from now on? Given the choice between abstinence and trying that again, the more appealing option is to table the whole idea. To practice celibacy until desire returns on its own.
It’s just all too much pressure: to take care of this man and to feel emotionally and physically fulfilled by him as well. For the time being, I can channel my energy only into the caring part. The rest will have to wait.
* * *
I miss my best friend. It’s a fact I can’t escape. At night, as the black countryside obscures the light of our bedroom, I talk to him in my mind as he sleeps beside me.
TC, you wouldn’t believe how difficult things are. I don’t know who to tell since you’re not here. No one can know how lonely I feel, how I looked at your face tonight as we sat watching the nightly news on TV. There was a shooting, a terrible one at a school in Connecticut. We watched for hours, coverage from the helicopters that flew over the school building, the close-ups of the broken parents, their hands over their faces. It was the most awful thing I’ve ever seen, and all I could think was that today is their Before and After.
I could’ve cried for hours, and it wasn’t even my loss. I just felt it more deeply than any tragedy before. These days I seem to feel everything more deeply. And then I looked at you, and your face was blank. I couldn’t understand how you didn’t feel what I felt—the depth of despair—the utter agony of the loss. You just watched the news and sipped your water, and I wondered if you were even there at all.
Depression thrives on aimlessness, a lack of utility. Since the two of us, Depression and I, seem to be gearing up for war these days, I am doing everything I can to arm myself with scraps of purpose, determined not to slide further into the blackness.
Brain School, as I’ve named it, is where I direct my efforts. I’m increasingly worried about the limited number of speech, occupational, and physical therapy sessions TC is entitled to by our health insurance. As far as insurance goes, it’s fairly generous, but it’s certainly not enough if TC is ever going to regain enough language to function independently again.
It’s painful to watch him struggle as he does, to wonder if he’ll ever conquer any part of the existence he once enjoyed. I am caring for a man who is still relearning my name, and as I reflect deeply on what makes this suffering so unbearable for me, the witness, I have to wonder whether it’s simply because I know all the effort TC put into building his former life. It’s my duty, my ambitious wish, to return that life to him—in whatever small and modest form I can.
I have an advantage on my side: I am a teacher. This is what I do. Utilizing what is perhaps the greatest selling point of the cottage, its light-basked sunroom overlooking the bay, I set up a makeshift classroom, complete with an easel and giant chart paper, each day’s agenda spelled out in large block letters. Now that Jack has recently started attending a nearby daycare, I am able to devote my days entirely to TC.
Over the past several weeks, I’ve made full use of my Amazon Prime account, buying flash cards to teach the alphabet and common sight words, as well as aphasia textbooks, brain injury workbooks, and anything else that looked remotely helpful. The glass table where TC and I work is strewn with papers, books, and games intended to fulfill his various therapy goals, such as a foam board with plastic pegs that TC can use to strengthen his weak right hand.
I am not a speech therapist, of course (a career decision I’m regretting now), but before I was a teacher, I worked briefly as a movement therapist, earning my graduate degree in Creative Arts Therapy. Back then I worked mostly with kids—young
people on the autism spectrum who utilized movement as a form of communication. It may not be entirely applicable to TC, but inside my head is a thick file of knowledge I haven’t drawn from in many years.
All I know for sure is that we must stay oriented to the concept of neuroplasticity. Our six-month timer is more than halfway up, and while some neuroscientists, like Dr. Jill Bolte Taylor, who documented her own stroke in the book My Stroke of Insight and a 2008 TED Talk, would argue that recovery can extend years in the future, I am dogged by the idea that we are working within a very narrow time frame.
On the first day of Brain School, I feel like a hoarder might before embarking on a first attempt to clean house. Where to begin when there’s so much to accomplish and every hallway is obstructed with junk? TC’s brain is like a ransacked file cabinet, tipped on its side, papers everywhere. Some files are clearly missing while others are buried so far beneath the chaos they’re unlikely to be recovered anytime soon. In short, it’s an organizational disaster.
With that thought, I tear a large white sheet of chart paper off the easel and lay it down on the table in front of my husband.
“What do you want out of all this, T? What is your goal?” I ask.
He pauses for a moment, letting my words settle in a coherent order.
“Work,” he responds simply. “I want to go back to work.”
“OK.” I smile determinedly, trying to imagine a scenario anywhere in the near or even remote future in which TC might return to an office in downtown Washington, unaccompanied by a caregiver, capable once more of designing mathematical models and giving professional presentations. To imagine all of this from a man who requires a babysitter when I run to the store punctures holes in my armor. I can wear a brave face, but hearing him articulate this unlikely dream shatters me inside. I want all of this for TC too. It just seems cruelly out of reach.