I rode the elevator up, made my way down the hall, and turned the corner into Dave’s hospital room. There, to my utter shock, I found Dave sitting upright in bed, his green eyes wide open. He looked at me intently, watched me as my face exploded into a smile. “Hello, my love!” I practically shouted.
I took his hand and gave it a squeeze. Then the nurse asked him who I was, and, to my complete amazement, Dave replied with a smile: “Alli.”
“And who is Alli?” the nurse asked.
He paused briefly, then answered: “My wife.”
“How long have you been married?”
“Four years.”
I was elated; I had not believed that speaking would be a possibility for weeks, frankly, if ever. I had not known whether he would remember me. I had not known what to expect. So this was a moment of pure and stunning exultation.
My conception of stroke patients, the common reality for many stroke patients, is one of partial or complete paralysis. I pictured Dave unable to walk or move his hand. I pictured half of his face drooping, his words slurred and jumbled.
But this was not the type of stroke that Dave had suffered. His stroke had not produced uncontrolled bleeding in his brain; his stroke had depleted oxygen to his thalamus, and he would be most plagued by cognitive, as opposed to physical, deficits.
Physically, Dave remained strong, and we were all thrilled as we saw evidence of his strength that day. He took a few steps with a walker that morning and stood up to brush his teeth. That afternoon he made a slow but full lap around the hospital floor. He answered questions on Chicago sports trivia, identified several loved ones in photos, and even read a couple of sentences off a paper.
Because of all of this, we were busy all day and I did not end up finishing the mass email until that evening, now an email in which I was able to recap the day’s triumphs. It closed with:
All of this just reaffirms in my mind that Dave is the strongest, most hardworking, most determined person I know, and I am so amazed by him. And that the prayers you’ve all been sending to Dave from around the world have been working miracles in conjunction with these brilliant medical professionals.
This is a marathon, not a sprint. There will be encouraging days and then there will be days that are tough and scary. Swelling for an injury such as Dave’s stroke usually peaks at about day 5, and swelling is inevitable, so it is likely that we will experience some setbacks as we hit days 4, 5, 6 in the next few days. So, please please continue to pray for Dave. Send all positive thoughts his way. Keep the love coming, because we truly feel it, and we cannot wait for Dave to be alert enough to share in all of your loving prayers and words.
In spite of the upbeat tenor of that email, there was still so much uncertainty. Dave’s father, being a neurologist and a self-avowed pessimist and, as he said, “someone who knows too much to know how bad it is,” reminded us that these early achievements, while encouraging, were not necessarily surprising. The part of the brain damaged by Dave’s stroke, the thalamus, did not regulate his motor skills, and so it made sense that Dave still had many physical capabilities and strengths.
What we should be worried about, Nelson warned, were the cognitive deficits. The thalamus can be thought of as the brain’s “Grand Central Station,” or the “quarterback,” as it plays a part in coordinating pretty much everything the brain does. All of the data moving in Dave’s brain, the “trains,” could still come and go, but without their Grand Central Station, there was no place for these trains to connect.
Andy explained it to us this way: think of Dave’s brain as a computer. The hard drive (the long-term memory, all of the information that had already been stored over Dave’s thirty years of life) was still in there, but the computer’s software that connects all of the data and allows it all to work together—the thalamus—had been wiped out. Data coming in and out did not make sense. His “hard drive” was suddenly stranded way back in his brain, unable to output all of the data that it had spent thirty years accumulating. That explained why, earlier that day, Dave had not been able to provide the word for “pen” when his doctor had asked him to name the object. But perhaps even more frightening: Dave could not hope to put in or store new data, either, without a healthy thalamus. Without his brain’s “software” up and running, my husband would not be making any new memories.
Losing the thalamus was a devastating blow. One of our doctors at Rush told us: “Pretty much any medical student knows that, when asked on a test ‘Which part of the brain controls x or y function?’ they can answer ‘Thalamus.’ It will pretty much always be correct. The thalamus is basically involved in everything.”
And there was something else: Dave’s type of stroke, and specifically the instance of it occurring in a patient of his age and profile, was so rare that there was scant medical literature on similar cases, and there was almost no established research on what the recovery or rehabilitation should look like.
Dave had survived, but his thalamus had two huge holes in it, two harrowing graveyards of dead neurons. And those neurons were, in large part, what had made Dave Dave. We did not yet know what of Dave remained, what through time and rehab could be regained, and what had been lost forever.
Chapter 13
Upstate New York
2010
My grandma Peggy is sensitive and sweet, but she’s not always subtle. And Grandma Peg most certainly was not subtle when it came to Dave, nor did she hide the fact that she loved my boyfriend.
In college, during one of Dave’s trips to my parents’ home, we had a nice visit with Grandma. Peggy is my father’s mother, and for most of my childhood, after my grandpa passed away, she lived adjacent to my parents’ home, an ever-present fixture of unconditional love and stability for all four of us children. The daughter of an Irish immigrant mother and an Italian immigrant father, Grandma Pataki grew up with so little that her life’s purpose became to support and provide for the future generations of her family. Her own lifetime of hard work and self-sacrifice was worth it to her because our success was her success, our joy her joy.
During this one particular visit, Grandma was in the kitchen, cooking eggs for me and Dave (her love of frying eggs was a remnant of her years working the night shift in a diner during the Great Depression as a teenager). “Snap a picture of us,” Grandma said, a coy smile turning up her ninety-year-old features as she put down the spatula and wiped her hands. “I want a picture with David.”
“OK,” I said, hoisting the nearby camera. Grandma then sidled up to Dave, folding into his arms. Dave returned the gesture, wrapping his arms around her, and the two of them were soon knit in an embrace entirely fitting for a prom pose or a honeymoon snapshot. Grandma had a girlish glimmer in her eyes—that was often the case when Dave was around.
They loved each other, Grandma and Dave. They did right from the start. “Your grandma is the first member of the Pataki family to truly welcome me in, to make me feel like I’m a part of the family,” Dave confessed to me.
I was glad of it; in winning Grandma’s glowing approval, Dave had unknowingly cleared a major hurdle. My grandma has always held a special place in my heart—a kindred spirit of sorts. A soul mate to predate the compatible soul-pairing that Dave also offered to me. So I loved that two of my kindred spirits found such an easy and natural affection in each other.
“When are you two going to get married?” my grandmother took to asking me whenever I came home and Dave was out of earshot.
I would roll my eyes, smiling exasperatedly at Grandma as I answered: “It’s the twenty-first century, Grandma. People don’t get married as young these days.”
“Why not?” Grandma would shrug. “A man who smiles at you like that? Don’t let him get away.”
The years went by. We graduated from college. Dave slogged his way through the early years of medical school. “When are you two going to get marr
ied?” Grandma would ask every time she saw me.
“Not while he’s in medical school,” I answered.
“Why not?” she’d ask.
“Medical school is just so hard. He’s working so hard. He’s still a student.”
So then Grandma’s question became, at every subsequent visit: “How long until Dave finishes medical school?”
Subtle? Not entirely.
“Grandma, how did you know that you wanted to marry Grandpa?” I asked one afternoon.
She thought about it a moment, her eyes wandering toward the rows of old black-and-white photos, images of her as a smiling girl, a bride, a young mother, a grandmother and then a great-grandmother. “You reach a point,” she said, “when you realize that you just don’t want to imagine life without him.”
“You felt that way?” I asked.
“Oh, sure. Besides,” she said, shrugging, “I knew that he could not live without me.”
Finally, on one visit, Grandma put aside even the pretense of subtlety. “How long until he’s done with medical school?” she started in.
“A couple of years,” I answered, knowing what she was really thinking.
Grandma’s eyes went wide. “A couple of years? You’re not going to make him wait that long, are you?”
“Why not?” I asked. “What’s the rush? We’re so young.”
She knit her hands together, rubbing the crinkled ring finger on which she still wore the small diamond my grandfather had given to her so many decades before. “Alli, when you have a guy like Dave, you have to appreciate what you’ve got. Don’t wait too long. Some other girl might come along who sees how great he is, and he might realize that he’s tired of waiting.”
It sounded quaint and archaic, precisely the type of cautionary advice one might expect from a grandmother who courted and married during the Great Depression, before women had won widespread opportunities for higher education or careers of their own. But even as I chuckled, shrugging the warning aside, I did notice a slight uptick in my pulse.
Someone else? Someone else for Dave? Dave deciding to marry someone other than me? Was such a thing possible? The thought filled me with panic. I didn’t want to think of it. You reach a point when you realize that you just don’t want to imagine life without him.
I didn’t want to imagine a life in which Dave was with anyone but me, or me with anyone but him. I had always just assumed that it would be us. I had always taken it as a given, even as I’d brushed Grandma’s questions and hints aside.
Maybe Grandma was more right than I had realized—maybe with her age and her wisdom she knew something I didn’t. Maybe when it came to choosing a life partner, it was important not to take anything, especially the other person, for granted.
Perhaps Grandma had seen Dave and picked him for me, even before I’d known to pick him for myself. One thing I knew for sure, thanks to Grandma: I realized then that I did want to marry the guy. More than I had admitted to my grandmother—or to myself.
Chapter 14
I discovered very quickly that the Dave who woke up in the neuro-intensive care unit at Rush Hospital was not my husband. Without his mind’s Grand Central Station, the “trains” in Dave’s brain not only were not making it to their destinations—they appeared to have been run off the rails.
Dave was completely disoriented, medically classified as in a state of amnesia. Most of his attempts to speak were jumbles of incoherent babble. “Confabulation” was what his doctors called it. It was incredibly sad; it was also incredibly frightening.
Dave and I had always “gotten” each other; this mutual understanding had been one of the main qualities that had drawn us together. At first, it allowed us to form a quick and natural connection. Over time, this mental and emotional intimacy had produced a language of our own—a shorthand that we often fell back on without even being aware of it, comprising and woven from inside jokes and shared experiences and an intrinsic understanding of the other’s mind. A close friend once observed: “You talk to each other a certain way that’s different from how you talk to other people.”
Well, not any longer.
Most of the time, though his hospital room was filled with close family and loved ones, Dave did not attempt to speak. When he did, I could not understand what he was saying. I had never paused to think about how much I had taken Dave’s words and his mind and his very essence for granted. Not until those pieces of Dave were gone, bruised and battered in a traumatized brain, did I realize just how fundamental they were to our relationship and our life together.
It was scary to see my brilliant husband’s body and mind kidnapped by this new, helpless, disoriented foreigner. One of Dave’s early attempts at conversation included a long, rambling monologue in which he told those of us assembled beside his hospital bed, in barely audible language, that he had taken on all of the pain and sins of everyone else in the world, and that he had to die as a result. It sounded like a bizarre and macabre mash-up of the theology you might hear if a schizophrenic was delivering a church sermon.
“No, you don’t have to die. You’re wrong,” Andy said, looking squarely into his younger brother’s eyes.
My eyes swung from Dave to Andy; I thought this answer seemed a bit harsh. I was in hyperactive coddling mode, like a hovering mother, affirming and rewarding Dave for every little thing he did or attempted.
“We should correct him when he says things that make no sense,” Andy said, looking from me to his parents and then back to Dave. “You aren’t going to die, Dave; do you hear me? It’s June 13, 2015, and you’re in Chicago. You’re at Rush. You had a stroke, but you’re getting the best possible care and we’re all here for you. We love you, Dave. You understand?”
It was fairly obvious that Dave did not understand what was going on, but we would keep telling him, as many times as we needed to, until hopefully he could.
* * *
—
Dave could not swallow. That most life-sustaining and fundamental of bodily actions, coordinated between the brain and the muscles of the mouth and throat—an action automatically performed even by newborns in their first seconds of life on their mothers’ breasts—was beyond Dave’s brain. So he could not eat solid or even liquified food, but instead he continued to receive his nutrients through an IV. After a few days, once he did pass “the swallow test” (yes, that’s a real thing), I was allowed to feed him gelatinous mounds of pureed mush. He could not hold the silverware for himself, so there he sat, wearing a bib and listening to orders to “open up,” just like we had planned to do for our baby in a few months.
“This is turkey, your favorite,” I said, my voice falsely chipper as I glanced from the menu card on the tray to the glob of beige jelly on the dinner plate. Most of his nutrients were still being delivered through the intravenous tube, one of the many wires snaking around his medical cot, connecting his pierced body to a constellation of hospital machines and screens. And though Dave could walk with assistance to the bathroom, he could not be trusted to know when he needed to use the bathroom, so he remained catheterized. Tubes in and tubes out—so many tubes performing the bodily functions that my husband was no longer able to perform for himself.
Due to the stroke’s impact on Dave’s cranial nerves, his eyes could not move from side to side or up and down. When he looked at me, he had to swivel his entire head to move his gaze, and he often had a blank and vacant expression, appearing confused or like he could not really see me. This, I would come to find out, was because he could not really see me. Dave was seeing everything in double vision. He appeared confused because he was confused, but he did not have the words to tell us.
All of this—the vacant stare, the mangled and incoherent words, the wires and the machines and the accidents in bed—combined to form a whole picture that could not have looked less like my husband. Dave was there physically, yes. And
yet the question I asked myself in silence—my heart aching in my chest, my mind spinning in panic—was this: who was this man, really, if Dave’s mind no longer occupied this broken body?
The doctors came in and out in an endless procession, crisp white coats and firm handshakes and so many questions about Dave’s habits and behavior and any other significant detail we might have overlooked—anything that might break open the mystery of this rare and confounding stroke. I struggled to remember the flurry of names and titles and roles. What I do remember is feeling like we had to pass a big test each time they appeared and asked Dave the litany of questions. What’s your name? Where are you? Why are you here? What’s the date?
When Dave’s neurologist told him that we were in Chicago and then, a minute later, Dave could not answer the question “Where are you?,” a sinking feeling settled in. It was all so odd; Dave could tell us that George W. Bush had been in Delta Kappa Epsilon, Dave’s college fraternity, but he could not tell us where he was or why he was there or what year it was.
At night, after Dave had gone to sleep, I would open my laptop and continue my nightly ritual of writing to my husband. I did not want to leave Dave. I did not want to go home yet—back to our silent, empty apartment, where photos of a smiling, strong Dave looked at me from the walls. Where our dog would greet me at the door, tail wagging, before sniffing around for the other half of her family.
I would watch Dave sleep in his hospital bed and I would type. With the ever-present rhythmic beeping of the hospital machines as my accompaniment, I would rehash the day, typing in a stream of consciousness about what Dave had done and who had visited. I did not count on myself to remember all of the intense and emotionally charged moments of these long ICU days, and I knew for certain that there was no way Dave would ever remember them, and yet a part of me wanted to believe that, someday, Dave would be alert and interested enough to know about these moments he was living. This nightmare we were living.
Beauty in the Broken Places Page 8