wondering
AFTER LIVING THREE years with the brain injury, Richard still expends enormous energy learning to manage his own physical therapy clinic. I take over all other responsibilities so he can be free to rest in the evenings and on the weekends. We enlist a brain injury counselor to help us set up strategies to make social interaction easier. Richard learns how to use “cheat sheets” to preplan conversation topics, how to finesse a day timer to keep track of relationship commitments, and how to initiate conversations. In role-playing sessions, he explores how to initiate sex, understand nonverbal cues, address relationship conflict, and deal with our children’s responses to his brain injury. I attend every session so I can become his memory when he forgets. While he learns tools to aid his memory, I’m witnessing his acceptance of his condition. He attempts, falters, tries again. It isn’t easy, but he doesn’t fight going to the sessions.
When the summer comes, we stop going to counseling in favor of hiking and playing. When we evaluate his progress in the autumn, we decide to look for a brain rehab program that will give us new information on the current state of his disability, as well as provide community support from other people who have experienced a brain injury. Richard doesn’t want to be with other brain-injury survivors. He wants to imagine that his injury will go away of its own accord, and on many days, he’s effective at faking his way through.
“He looks great!” people say when they run into him on the street.
Managing the clinic is boosting his confidence. Without a solid program to push him past this comfortable plateau in his development, he’s going to stay right where he is. That’s going to result in unsatisfying personal relationships.
Much of the research on brain injury says that most improvement happens within the first year after the injury. If people move into rehabilitation programs early and find adequate care, they can be functional and contributing members of society. Even our neuropsychologist, Dr. L, said that much of the radical improvement would occur within the first two years. Patients do not “recover” in the sense of returning to their previous lives. Many of Richard’s deficits were likely to remain, and my work would be in accepting him as he is.
Still, I’ve read “The Median Isn’t the Message,” scientist Stephen Jay Gould’s excellent essay on the problems of cancer statistics. Gould took a rational approach to unpacking the polarities inherent in either ignoring the stats or depending on them so wholly that they seem like a death sentence. He approached his own cancer recovery by analyzing median statistics and their variation from the viewpoint of an evolutionary biologist. What he discovered was that certain factors, including an accurate understanding of the death data, as well as personal characteristics like an optimistic personality, increased his statistical likelihood of survival. We’re inspired. Just because brain-injury patients land in plateauland doesn’t mean that Richard has to. We haven’t seen any evidence of permanent stasis. Travel, adventure, body-based therapy, art, and God knows the novel erotic situations I keep throwing at him have helped him make important leaps in functional gain.
Richard doesn’t need talk therapy (although I find myself opening up more to friends for counsel and support). Richard’s problems are not psychological—they are related to executive function and cognitive difficulties. We contact the University of Washington Medical Center to be referred into the brain injury program. First up, a neuropsychological evaluation for him, and an interview with each of us by Dr. P. We want to know where to start again.
Richard’s tests give us a new baseline measurement. What’s strong in Richard: effort, involvement, immediate recall, immediate working memory, performing with structure, problem solving, and deductive reasoning. What’s severely to moderately impaired: language skills, complex verbal memory (especially spontaneous recall), formal naming, verbal fluency, right-hand sensory discrimination, auditory memory. He is found to have a flat affect, and difficulty with initiation, planning, and carrying out activities. His range, speed, and level of independence with complex information skills are all diminished. He’s not depressed. The good news: everything that was an asset before rehab has become stronger. The bad news: the weaknesses have not improved. Richard is using the compensation strategies he has learned to their maximum.
Dr. P writes:
People with his profile are stoic, conscientious, and tend not to complain much of difficulty. At times of added stress, they’re vulnerable to some intensification of cognitive, and physical or behavioral difficulties, which can lead to aggravation of memory, fatigue, and overall social withdrawal. Richard’s mild, moderate, or severe areas of neurocognitive and neurobehavioral difficulty are quite consistent with hypoxic injury, and not psychiatric in pattern or nature. At the same time, this man’s profound degree of change in overall function and life circumstances, and a personality that tends to minimize or compartmentalize, may be complicating his optimal levels of adjustment.
When Richard hears the recommended treatment program, he blinks away tears. We find out several weeks later, when we read their report, that the University of Washington doctors thought his reaction to his evaluation was sadness about his impairment. When we talk on the phone with Dr. P, I ask to clarify his reaction.
“I asked him why he cried in the office,” I tell her. “He wasn’t sad. He told me that the reaction that you saw that day is relief. He’s relieved that you can help him.” There’s silence on the other end.
“We will help Richard,” Dr. P says.
One week later, he’s signed up for cognitive rehab, group therapy, individual therapy, and consults with the lead neurologist.
Just a few months earlier, when we neared the three-year deadline for filing a legal case against the hospital for causing Richard’s brain injury, I called our sister-in-law, a lawyer. I wanted to hear what we might be in for if we file a medical malpractice lawsuit. I sat in the dark stairway of our home listening to her tell me how our life will be taken apart, how the justice system can ruin relationships, how there’s no guarantee that years of our life won’t be wasted in the enormous effort.
“If we do this,” I tell Richard, “we’re going to have to refuse to let it take over our lives. That means we talk about it only when necessary, we don’t get involved in learning about the system, we do what they ask us to do and no more.”
“Will you do the work of the case so I can focus on working at my clinic?” he asks.
“Yes,” I say, not realizing how many hours of preparation, interviews, and tests it’s going to take to be involved in a lawsuit.
When we call Mr. Nace to tell him of our decision to go forward with a lawsuit, he advises that the case will be filed immediately to observe the statute of limitations. We tell him we are clear in our motivations: even though it terrifies us to enter an adversarial system, we wish to be compensated for what was lost when Richard’s brain injury diminished his capacities. But we want something else too. We want patients entering the hospital to receive the blood they require, for there never to be a competition for plasma. If it takes legal action for patients to receive uncompromised, life-giving care, then we’re willing to be the ones to set things in motion.
“Tricky business,” says Mr. Nace. “We’re not in control of those kinds of outcomes. A malpractice lawsuit tells the hospital that they’re responsible for providing good-quality care, but gives the doctor and the staff the freedom to determine how to do that.”
“We can’t influence them to change?”
“It could very well be that when the depositions are completed, we have a clear idea of why things happened as they did that night. And once the cause is established, their policies may have to change. But we cannot make it a condition.”
We tell our lawyers that we don’t want to hear about details of the case unless our attention is essential. We don’t want to read depositions; we want as little involvement in the legal functions as the system allows, so we can focus on Richard’s healing. Mr. Nace assigns his son Christopher to our case. They begin the vast accrual of information.
Now, everything that we have undergone is open for scrutiny. Once the hospital corporation brings in its high-powered legal team, we’re requested to surrender every piece of material that could potentially be relevant to the case. We must send the lawyers every aspect of our history: medical records from his doctors; any paper that mentions his treatment or hospital stay; lists of expenses and bills; every calendar entry since his surgery; every piece of paper and every item of electronic information that mentions the doctor or hospital; all our records related to any therapy or psychiatric visits in our twenty-three-year marriage, including the private notes our therapists wrote about us; every letter written about Richard’s treatment, including those private letters sent to and from family, friends, and our community. In the end, I have to hand over copies of all of my journals and notes, including everything I wrote during our stay at the hospital, and for the first years of his treatment.
I learn from friends that in Canada and many other nations, only the specific events of the patient care are admissible in medical malpractice cases. In America, legislation has limited the power of medical malpractice lawsuits; patients are considered to be escalating “frivolous” suits, thus we’re subject to greater restrictions than citizens of most other countries. In order to conduct this case and keep our wits about us, we’ll have to adapt to becoming more vulnerable than we’ve ever had to be. And that includes handing over the most intimate details of our lives to a team of lawyers who want to find ways to expose our family.
I read the private letters and journal notes, and cry. I absorb the particulars of those terrible initial months. We go over the five-inch-thick volume of the hospital record to learn the specifics of the course of events on the evening Richard lost consciousness. Until this time, we haven’t had much energy to isolate precisely what happened. Every fact of the hours Richard spent in spasms, bleeding, and in restraints on the table in the ICU, every scream, plea, and breakdown as I fought for his life, is written into that record. The surgeon told me that I couldn’t come to the ICU the evening after Richard bled out, due to hospital policy. I read his written orders to the staff denying me access to the ICU. Every request for information about Richard’s memory problems, every note on my discussions with the nursing staff about his strange mental state, every complaint about his lack of cognitive recovery is noted in the hospital record, in black and white.
One day I come to the kitchen to see Richard sobbing with his head in his hands, the hospital record open on his lap.
“What is it?” I ask.
His finger points to a line in the record. “Wife present at bedside. Every day. Every time they take the notes.”
Richard shows me how we might make it through handing our private lives to strangers to judge. We’ve got nothing to hide. Even our mistakes have been so very human. But I’m not naive enough to believe that the legal world works in this way. The case has its own terms of engagement. We listen to what the lawyers make of us, but we do not allow it to disturb our peace.
We enter one of the most challenging times of our married life: balancing Richard’s part-time rehabilitation and part-time work with my responsibilities—the court case, household and family obligations, and the launch of a career as a business coach and writer.
We meet with the team at the University of Washington Medical Center’s Brain Injury Rehabilitation Program. Four doctors, a counselor, and a team manager sit in a light-filled boardroom. The doctors and rehab counselor outline a program for Richard. He’ll begin with an eight-week cognitive group to help him understand brain injury, and individual rehab psychology to provide support in managing the alterations the brain injury has made in his life. He’s also strategizing with the rehab counselor about his new tasks as director of a clinic: marketing to doctors, managing staff, and conducting planning and financial projections.
“The rehab team would like to add in speech and group psychotherapy,” the counselor says.
“I’m not ready yet,” Richard says.
“He’s not trying to avoid the therapy,” I say. “It’s just that he’s absolutely committed to his new role at work, and doesn’t want to compromise his job.”
“These treatments are not expected to restore lost neurocognitive or neurobehavioral functions,” Dr. P tells Richard, “but the use of strategies and new techniques can allow you to function in more effective ways. Actual performance may improve somewhat even if underlying brain functions don’t undergo any dramatic further improvement.”
We nod our heads. There are no guarantees.
“Why did he end up with both short-term and long-term memory loss?” I ask.
“We think that he may have had a significant response to waking up without his former identity,” she says. “Post-traumatic stress disorder can suppress long-term memories, and leave him temporarily or permanently without his history.”
“PTSD?” I ask, not able to recognize how this could possibly happen.
“Richard could have been so defined by his former personality that the shock of who he had become after the brain injury caused his memories to disappear.”
It’s unfathomable that PTSD could have such an impact on his brain that he’d forget his entire past. It becomes a possible story to explain things, but it doesn’t actually help us change our situation.
Once a week, Richard goes to a cognitive group program. They study the effects of brain injury, including the deficits that injury to each lobe is apt to cause. He learns about activities to stimulate attention and strategies for reducing distractions. We discover there are times and environments in which Richard can focus (in quiet, with structured routine, at the beginning of the day) and moments in which concentration will prove to be impossible (when fatigued, when he is obsessed by having to get this one thing done). Time management is not an issue for Richard, but his fatigue is constant and overwhelming. His sleep requirements after the brain injury increased dramatically, but rest is even more necessary after he returns to work. When he hits his limit of endurance, he practically falls asleep at the dinner table, just like our children used to do. I learn not to ask for communication at the end of the day, and to do all of our family-related conversations in the morning. Richard also learns to take notes, manage social settings, plan projects, schedule his life and work. He identifies his greatest fears: having to speak to more than one person at a time, and being overly dependent on me. Over the weeks that he takes the class, he becomes more attuned to his deficits. With the help of the instructor, he recognizes that he withdraws because he’s afraid of being alone. He resists asking for help. For his homework, he interviews me about changes I see in him that he does not see in himself. I’m way too excited at the chance to weigh in on his personal defects.
We sit in the kitchen. He takes notes while I tell him how it is to be with him.
“You drive way too fast for your brain’s slower reaction time.”
“I’m a very good driver. A very, very good driver,” he says, trying his best Rainman.
I don’t smile. “Terrible sense of humor. Put that down,” I tease.
“No.”
“Okay, here’s one. Since the brain injury, you have an enhanced capacity for empathy.”
“I do.”
“You’re obsessive. And occasionally inappropriate.”
“How?”
“Grabbing me in front of the kids.”
He’s blinking twenty times faster than normal.
“And you have some strange physical responses. You went from this flat affect to a fast eye-blink whenever you’re emotional.”
“Anything else?”
“Obsessive hand-wringing, repetitive touch, social phobias, inability to form friendships, difficulty with technology.”
“You didn’t have to think.”
“I mean, these are things that I notice all the time. What’s on your list there?” I point to the form where he’s filled in the responses with his strange scratchy handwriting.
“My goals. From before the injury.”
“You remember?”
“Climb Mount Rainier. Be promoted to regional manager. Play competitive tennis.”
“Baby . . .”
“It’s okay.”
“What about now? Are you making any new goals?”
He looks at his list. “Stay active. Eat healthy. Keep a balance between work and home life.”
To accomplish these goals, he’ll have to keep saying “no.” As for me, I’m going to have to free myself from the notion that he’s going to stop forgetting, or that he’s going to find former parts of himself. He’s not a warrior. He’s more like a mama bear who has been hibernating in the long winter, dazedly awakening to his brood.
I’m curious about Richard’s mind, and the ways his changes affect who I think I am. We live as pluralities, all these selves that try to unify under one autobiographical narrative. I’m the high school student and the parent; the nice girl and the unkempt lover; the wild woman and the caregiver. As Whitman said, “I contain multitudes,” each self-concept operating from a past or present sense of “I.” But there’s another self too, the “possible self,” the one that represents the notion of who we’d like to become, the things we might do, even who we are afraid to become.
Because Richard’s past has so fully disappeared, he also has no reference for what he might be in the future. He is rootless and visionless. If he could have pulled on his old personality and history like a worn coat, he would have. Just to make us happy. But he seems to require a do-over. And because I feel somehow responsible for his reinvention, I have a chance to ask questions that would never have occurred to me: What does it mean to have an identity? Is there an enduring self when the narrative is released? Is there something beyond who we think we are?
We have weekly telephone calls with Joshua and Dylan, which work because these conversations are structured and time-limited. But when they have days or weeks to be with their father, what they’re struggling with becomes apparent. It’s sorrow over the loss, and confusion over what their family is now. In stressful situations, our daughter is more naturally angry; our son is given to withdrawal. Because in the past I’ve been the emotional center of the family, their concerns and complaints often come to me. Now that they see their father has become sweet, gentle, and unencumbered by his past, our adult children want to get closer to him. They want to define what their new relationship will be.
It takes me years after the brain injury to begin to speak with Richard about the angry man he used to be, about the cycle of addiction and rage that we kept enacting in our family out of habits learned from our parents. One day, as we walk at Green Lake Park near our home, I tell him about the violence in his past.
“Joshua was insistent upon making his own choices, even if they were destructive. He was skipping school, taking drugs, and physically pushing us around.”
“That must have been hard on a man who spent most of his life trying to control his environment,” he says. That man. The one he no longer knows.
“Your temper got the best of you. You hurt him,” I say, and describe in detail the fights he had with his son.
“How could I have hurt my own child?” Richard asks, tears blocking his view. I pull him to the grass, wait for him to stop crying.
“What do you remember about the violence in your childhood?” I ask him.
“My alcoholic stepfathers spanked me. My uncle beat me with a brush when I didn’t bring him his pain pills from the pharmacy. I can recall instances of being hit by others, but not ones of being the hitter.”
Richard had a chance to clean up some of his past years ago, when we went to therapy. But he hadn’t really come to the importance of vocalizing his part in perpetuating violence before the cancer wiped out his life. For months we walk the park, preparing for Joshua’s winter visit.
When they sit in the kitchen together after breakfast, Richard says, “I am so sad that I hurt you. I can’t remember those things, but I can be with you as the father that I am now.”
Joshua says, “Dad, that man doesn’t exist. There is nothing more necessary.”
In this new relationship, Joshua and Richard play tennis together and talk about sports and laugh over our son’s fine quips. Dylan likes to ask her father questions and go for a beer at the pub and watch movies and talk about ideas. They say this new father feels closer to them than the time-starved, demanding one they knew before.
“Why did you never come to the hospital?” I ask Joshua before he leaves after that visit.
“Losing my dad was the most terrifying thing I could imagine. I couldn’t go to any place where that seemed possible.”
But there are challenges that come with the power shift in the family. Joshua initially sees his father as being too eager to accommodate my requests—“That poor bastard,” Joshua remarks when I ask Richard to do errands for us. Until his dad reassures him, Joshua doesn’t understand that Richard’s motivated by generosity, that he knows he has a wife who copes with stress by becoming a “control enthusiast,” and that he is doing what he wants to do too. When an early essay from this book is published in the Southern Review, and I begin blogging about our experiences, Dylan expresses her resentment over the story being in my control. When a memoirist writes about her family, people get pissed. Dylan sends me a letter, written in the form of an essay, shocking at first, that describes her fate:
My mother is a writer by profession. My father’s story has been lost. And so I moved from resenting my father for his lost memories to resenting my mother for her only tactic in also grieving this loss: filling it up with her memories. She was rewriting his story. And I wanted in. In fact, my retaliation was so stealthy that I didn’t even know it was happening. My mother and I have a wonderful relationship. And excluding a short time in my early teens where I felt the need to reject her stupid ideals in order to prove my independence, we’ve always been close. And so when my parents started their blog, I was the person behind the scenes, reaping the benefits. But then when the stories started to come out, I felt a tension in my jaw, a balling of my fist. “What is all of this romantic bullshit?!” I screamed inside my own head. In the most cunning of ways, I began to attack my mother’s writing.
The words of my child make me aware that I am molding Richard’s story as I wish, and that words have impact. I want to be uncompromisingly honest, but this is not my story alone. I have to take into account that all memory is radically subjective and that, when we raise questions about ownership, the story becomes even more complicated. Recent research supports this assertion. Memory can insert things from the present into recollections of the past. It can make us think we fell in love at first sight, when, in truth, we’re projecting current feelings into our history. Our memories do not archive events like film footage; we reframe and edit events to create a story to fit our current world. The hippocampus, that untrustworthy film editor, makes the memories we wish to see. Shaping a story is unavoidable.
Later, Dylan will tell me that her essay was written in “classic late-teen sensationalism” to address a deeper awareness: years after Richard’s brain injury, she was still coming to terms with the guilt and loss she felt for having left home, and for never really knowing her father at all. She wanted her perspective noted in the family lore.
But perhaps my daughter was right—my stories have had the tinge of “romantic bullshit.” There are parts I find dear because of the ways Richard is altered: his innocence and newness, his empathy for the human experience, his crying over anecdotes of people lost and found again. In the early years of the brain injury, romanticizing our story was safer than confronting reality. I needed to capture the potential mystery and excitement of our relationship so I might hold on to its promise. But being with Richard also dashes my idealizations, for the ways that I suppress and disregard my emotional reality reveal themselves in being with a man who cares nothing for making himself something for others.
His brain injury, even though it brings challenges for coping in life and diminished potential for career success, also has an iron imperative: you must wander to find yourself. In that wandering, I lose my religion. I find a silent, steady undercurrent below thoughts, beliefs, concepts. And all of those thoughts—how much I love the former man, how I’ll never be in that relationship again—are of the past and the future. What Richard’s brain injury provides is an entry to an immaculately fresh present moment. Perhaps the former husband and father disappeared so we can find our way toward this. Perhaps his memory loss—the loss of his association with the past—is not simply trauma, but rather his genius, the daemon enacted upon him.
On a family vacation long after the brain injury, I ask our son, “What’s your favorite thing about us?”
“Mum, you see families that are troubled and you see families that are healthy. Rarely do you get to see a family that goes from fucked up to amazing. We got to live inside that remarkable experience.”
He’s right. We are all of these things.
Alongside the progress Richard makes with his physical therapy practice, and our acceptance of the brain injury, is the truth that Richard has problems that are not being resolved. He still has trouble initiating and maintaining relationships; he struggles to communicate verbally; he has challenges with intimacy of all kinds. Recovery from brain injury is marked by fragility, vulnerability, instability. Without a coherent identity and the purpose, interdependence, and self-management to balance the disruption of the self, the brain-injured enter a liminal state, seeing themselves as neither “me” nor “not me.” Richard struggles to find balance between life and work, and even though he improved dramatically in the first few years, he has no access to the executive-thinking skills that were the basis of his former career and the financial support of our family.
For the medical malpractice lawsuit, the effects of the brain injury on Richard, as well as their cause, must be documented and proven. Richard and I fly to the state where the case will be tried, to have him examined by psychologists and neuropsychologists, and to be deposed by lawyers. Our doctors, nurses, lab technicians, hospital staff, therapists, rehab specialists, financial planners, relatives, and children are also deposed. The case will take nearly three years. We don’t worry as much about exposing our private lives to strangers who might use the information against us, but we do fear that we will be castigated for bringing the lawsuit. We know the sequence of events that led to Richard being refused blood, and the toll that mismanagement of his care took on his health and life. Now we have to convince ourselves that we are rightful in taking the health-care corporation to court. Because the lawsuit will be grueling, we need to know we are being responsible and acting with integrity.
We learn from our research that the hype about medical malpractice suits is, according to Tom Baker’s The Medical Malpractice Myth, “urban legend mixed with the occasional true story, supported by selective references to academic studies”; that, including legal fees, insurance costs, and settlement payouts, the cost of medical malpractice suits comes to less than one-half of 1 percent of American health-care spending. Neither are the cases frivolous: 90 percent of all cases show evidence of wrongdoing, courts efficiently throw out baseless cases, and jury awards are not going up. A rise in medical mistakes, not frivolous lawsuits, has been found to be at the basis of increased medical malpractice in the health-care field. In fact, it can be said that the increase in lawsuits has pointed out specific problems in how medical injuries occur. According to Baker, “Lawsuits are the reason that we know what we know about medical mistakes.”
Someone has to shoulder the ongoing responsibility for a brain injury, and it’s often the patient and the family. We feel the consequences of Richard’s injury ought to be shared by the hospital. We could never have caused this event, and we did everything we could to prevent it, even screaming for an intervention to be made on his behalf when the nursing and resident staff were unresponsive. We expect that the surgeon will be absolved in the case, because he could not have prevented the injury. The nick on Richard’s stomach happened in the surgery, but the actual cause of the brain injury was the bleeding that remained unaddressed for hours. The surgeon revealed—both to my sister and me in person and in his deposition before the lawyers—that he ought to have been called in the first moments of the catastrophe that evening, not when Richard was near death. It is clear to us that the ICU staff made the mistake, and that the hospital is accountable for failing to do what their own policies indicate is the right thing.
We are compelled through our sense of responsibility to Richard’s health, our children’s needs, and our awareness of the American values of justice and safety to follow through with the lawsuit. The hospital corporation’s lawyers will do everything in their power to discredit us.
One court stenographer, three barristers, Richard, me, and a lot of coffee in a steely, lawyerish meeting room. My husband is being deposed. Many hours, many questions, each one becoming more personal. Whenever Richard cries, the men cringe. The lawyers are best at being adversarial, not at looking at what went wrong in a situation and addressing what needs changing. Oppositional stances do not feel true to us. There’s been no experience in our life where a process oriented to combat has had more relevance than one oriented to cooperation. We’re out of our league, trying to understand why the corporation’s legal team wants information on the state of our marriage, the times we’ve been to therapy, why we didn’t follow conventional Western medicine and instead chose alternative methods to complement Richard’s care.
Three months later, when the first phase of the rehab program at University of Washington is completed, and we have made our second trip to do interviews for the case, I write to our lawyer and ask him what his thoughts are about Richard taking a break from all of the rehab activity.
Chris writes us back in his usual plain talk. The reality is that Richard is working very hard with his therapy while also trying to continue working. If he needs a breather, no one is going to fault him for that. And, again, I can’t emphasize enough that you and Richard should be doing what you need to for you guys, not for the litigation.
That summer, Richard and I make a list of the things we’d like to do if we are awarded a settlement: pay off our mortgage, zero out the kids’ student loans, take a small vacation, give to our favorite charities. Other than our home, we have no debt. We have medical insurance and we are oh-so-thankfully healthy. We have each other. We place the list of wishes in the box in which we keep all of our lists, and we forget about the legal case. A few weeks later, I learn that my father is dying. I leave home to be with my mother and father, to set up hospice and help coordinate his ongoing care. Richard meets me there to say good-bye to the man he knew as a father. When my sister comes to stay, Richard and I fly to Banff to hike the wilderness and restore ourselves. By the end of the summer, my father is dead.
After grieving, memorializing, and reconnecting with our family, we’re called to a court-ordered mediation, a part of the process we’d expected. It’s six years after the surgery and we’re clearer than ever about what matters in our lives: authenticity, kindness, love. There isn’t any possibility of losing anything. Still, I’m scared. I want to settle rather than have our lives raked over in a weeks-long court case.
I call my therapist friend, who says, “The justice system also works for wayward, bohemian people who live in liberal Seattle.”
“Huh?” I say.
“Justice. She works for you too.”
“You think?”
And then my friend, who has been a whistleblower in a landmark case, listens while I tell her how I’m feeling optimistic about the judgment, except when I am freaking out about how ridiculous it is to put ourselves through this process, and how sad I am that Richard has to revisit the terror of the hospital, and how I want to come across the table and slap the face of the smartass city lawyer deposing me. Richard and I pack our suitcases, and by the New Year, we sit across a table in a lawyer’s office waiting for the whole mad dance to end.
Our lawyer, Chris, introduces us to Eddie, our mediator, who has come out of retirement for this gig. Eddie has silver hair and spectacles and animated gestures that, over the course of the day, escalate from a finger point to a stadium wave.
“He looks like the Planters peanut guy,” Richard says, and we smile.
Our lawyer tells us that we will not sit across the table from the opposing lawyers and be interrogated. That part is over. Instead Eddie travels back and forth between two groups: us—two long-married, jet-lagged, less-than-loquacious people and their lawyer; and them—three lawyers, one hospital CEO, one parent company representative of the hospital CEO, one risk-assessment expert, their legal assistants, and several consultants by telephone. Eddie says this is likely to take all day.
He starts the process by giving us some ridiculous number that wouldn’t cover the expenses of the legal process, which Chris rejects, threatens to walk away from, and then the gauntlet goes down. In an odd display of what can only be called professional bullshitting, Eddie rushes into our room every fifteen minutes or so, throwing down some piece of “evidence” intended to impugn our characters and prove we are unworthy of any of their hard-earned corporate profits.
“Do you realize you used sketchy alternative medicine to heal him?”
“In the progressive parts of the country, this is called ‘complementary medicine.’ And we also followed the advice of our neuropsychologist,” I retort.
“Not to the letter,” Eddie responds.
“Does anyone?”
“People who care about their spouses do. He wasn’t treated for months during this period,” Eddie says, pointing to the calendar.
I pull my laptop from my bag, open my calendar, read off Richard’s therapy appointments, homework assignments, practice sessions.
“Did you make these available to the defense?”
“Every single piece of information,” I say.
“Do you realize that a jury in this part of the USA is going to be composed of Republican grandmothers? They’ll never understand you,” he surmises.
“The justice system also stands for wayward, bohemian people from liberal Seattle,” I say.
For most of the day, the mediation goes on like this, cajoling, catastrophizing, smearing, shaming, scorning, nitpicking, demanding, whining. For hours. Until the CEO of the corporation that owns the corporation that owns the hospital calls. Eddie listens to her speak over the phone and reports the message to us.
“She says the surgeon saved his life!”
“We know,” we answer.
“For most people, that’s enough,” Eddie says.
Richard and I look at each other. My husband has said little all day, and now he blinks back tears of gratitude for being given his life. I look closely at Eddie. My gaze says: You really want to put this gentle, beautiful one on the stand?
On the whole, it’s amusing to parse how we might be judged. I calculate the day’s salaries the corporations have paid to those present in the adjoining room (whom we see when we go for coffee breaks), and start to welcome the obvious game of verbal barrage. I’m thankful to have been surrounded in my life by cancer survivors, peace activists, ecofeminists, same-sex-marriage advocates, and rebel artists, people who have taught me about power and its uses. The strange thing about Richard losing his former identity as an eloquent, dashing, smartest-man-in-the-room guy is that now, all of his former personality can be seen for what it was: window dressing. Not wonder.
The other side starts throwing numbers around. Chris asks to take a break and tells us the choice is ours. His firm is willing to go to trial, and if we wish to walk away, there will be no difficult feelings. Everyone leaves us alone. Richard and I sit in silence. I can’t find an answer inside about whether we ought to settle. It’s like being in France again and not knowing where home is. I have no intuition. Richard looks at me with big eyes and says nothing. I go to the bathroom and call my friend Judith to ask her what she thinks. Her words go into me, but they do not hold. I sit on the floor of the bathroom and talk to my dead father.
“Hey, I know it’s a little soon to be involving you down here again, but I need your help. Can you knock some heads together and get this done?” I say to the walls.
When I come back to the office, Richard and Chris are sitting together.
“Have you made a decision?” Chris asks.
“I don’t know what to do,” I tell him. I’m scared that I’m going to do nothing and regret it for the rest of my life.
Eddie bounces in the door, his tie askew, and yells out a number. “Final offer!”
Richard looks up at him, and says, “Tell him if they can get to $___, we’ve got a deal.”
I look at my man a long, long time. Not only are these words the most he’s said all day, this is also the first time he’s made a strong decision since the brain injury. I start laughing, which makes Chris look at me like I’ve gone a little crazy.
“You okay with this deal, Sonya?” he asks.
“Looks like he’s ready to settle,” I say.
Less than five minutes later we have a typed, notarized contract to sign, and we’re shaking hands and preparing to go home.
In the taxi on the way back to the hotel, I ask Richard, “How were you able to be so definitive?”
He shrugs his shoulders.
I get it. The big mystery. That’s what we’re living in.
Nearly ten years after Richard was diagnosed with pseudomyxoma peritonei, we learn through the Washington Post that the experimental treatment that saved his life is now considered the standard of care for long-term survival. A decade later, the cell pathology is still often misdiagnosed and the treatment methods are misunderstood. No one knows the cancer’s cause. Far too many people suffer early deaths from not receiving a diagnosis, or not being referred to a PMP specialist. This disease is not curable, but it is treatable. People are living years and years. Richard’s yearly CT scans come back free of disease. His death is as certain and unpredictable as my own.
When we return to Seattle after the settlement, we start living like he’s cancer-free. We’ve been married for thirty years and we decide to have a blind date. We meet at the art museum downtown to enact the roles of two people who have not known each other. Richard is waiting for me when I arrive. At first glance, I’m relieved that I’m attracted to him, like the pretending has begun some way of seeing that I was incapable of when he was a slurping ape over a cereal bowl at breakfast.
We walk around the exhibit, watching each other. I’m pretty sure he’s checking out my curves. I observe what art tends to captivate him. When we sit down to dinner in the restaurant, he orders for us. He looks at me directly. He has fine manners. He leans across the table.
“What are you drawn to in a partner?” he asks.
This brain-injured man, the one who forgot our life, the one with few desires, the one whom I have been teaching to become a lover again, is teaching me what it is to imagine with all your heart. Everything he wanted to keep—identity, objects, status, strength, allies, the past, and the future—has been lost. Dying for a time in surgery showed him that lives are impermanent too. He has taken me into his irrefutable truth: nothing I am in any moment will remain.
Like most of us, I have had many false selves that evolved out of desperate refusals to meet this, this right here, right now as it is. Sufferer, sweetheart, scapegoat, spiritual scout. My husband’s willingness to meet the conditions of his life has altered our family and loved ones. It has freed us from the tyranny of our story. The man I have known for decades, who is also the man I have never known, reaches across the table to take my hand.
“What do you love about your life?” he asks.
The story of the family we created once—with all of its rage, shame, mistakes—flashes through my body, and then I remember there is nothing to prove with him, or with others, or here. I won’t know who I’ll be until I give up seeking who I will be. I take his hand. For the first time I answer his words with silence.
But this is what I’m thinking. We are all storytellers. We remember. Or we think we remember. Every day we wake up and we create a story about who we are. We create ourselves from the remnants of our past, a past that exists as we imagine it to be. Before we raise our heads from the pillow, we fix our beliefs in our memory, and we construct our remembered roles—child, parent, lover, worker—and we thrust our expectant bodies out of bed.
But neither history nor our memories are reliable. Our minds influence not only the probable future but also the remembered past. Our very biology makes this so. Our stories do not emerge exactly the way that they happened. They are pieces, collages, mosaics, found objects, assemblages. Montaigne said, “Painting myself for others, I have painted my inward self with colors clearer than my original ones. I have no more made my book than my book has made me.” Turns out, the only thing reliable about the past is our insistence that it was so, a drunk claiming he can drive.
This story that Richard and I created together has been read (in part) by our children. Over the years, I’ve listened to dozens of therapists and medical professionals and healers tell me their opinion about what happened. We’ve sat with friends and family who have their own experience and ideas about what happened in our lives. I’ve read a hundred books on memory and identity, and followed the works of brain scientists plumbing this territory. I’ve interviewed many people—teachers and therapists and mystics—who specialize in the thought-created narratives we tell about ourselves. I’ve had conversations with my husband that encourage me to look more deeply at what I think I know.
“What do you remember about your time in the hospital?” I ask my husband, years after the surgery.
“I remember waking up,” he says, then pauses. “Wait. That’s a lie. I’ve been told that I woke up and, like many aspects of my life, it became my story.”
“When did you come to?”
“I’m walking down the hallway with you. I look over, and you’re there.”
“That was ten days after you were awake, talking with me.”
“Yeah. That’s how it is.”
The tale you have read here has been crafted by my memories, and also by my asking Richard to sit in silence with a question until some memory emerged. Even then, many of these vignettes are my recollections. I’m the one who writes things down. Sometimes I read the story to Richard to see if I have imagined correctly. The thing is, how would I know if I hadn’t imagined accurately? The man wants to agree with me. That’s how his love extends. His actual memory comes and goes. So does mine. So does yours. We are all making this up, even though the narrative form pretends that our life events are cohesive and understandable. Our stories are at best mash-ups: they point to things; they are not the thing.
After the settlement of the medical malpractice case, we take out our box of lists and do everything we said we were going to do. We give away money, pay off the house, put some funds in a savings account for travel.
“Is there anything left to do? Anyone left to forgive?” a friend asks Richard.
“One of the things that weighs on me is trying to remember my childhood. I’ve always identified with my mother before the brain injury. Didn’t know my father at all.”
Richard’s military father and bohemian mother divorced when he was a toddler. His parents never saw each other again. Once, when Richard was eighteen, his father dropped by the house on his way across Canada with his new, younger family. Richard was home alone. They stayed to use the bathroom, and then they were gone.
“I think I need to forgive my father for not staying in our lives,” Richard says.
Other than Christmas and birthday cards with five-dollar bills tucked inside, Richard’s father never tried to get in touch with him. We’d always wondered how he could separate himself from his family. After fifty years of silence, Richard works up the courage to call his father. He’s a ferry ride away, in Victoria, British Columbia, but he doesn’t want to meet his son.
“I’m not good company,” Richard’s father says. “I don’t want you and your wife to go out of your way.”
Richard insists that we visit.
We take the ferry to Victoria, planning to camp for the night at a city park. But first we arrive at his father’s tidy suburban home.
“How you doing?” I ask Richard when we park out front.
“Apprehensive,” Richard says. “I have no memory of this man, and no relationship with him. So I’m not sure why.”
We’re surprised at the man who opens the door. He is five foot eight to Richard’s six foot four. He offers a shy smile and invites us into his house. When Richard hugs him, his father steps back. Then he leads us into his traditional living room, which is dark and lonely. We ask questions about the family. He shows us pictures of his parents, tells us about his Mexican mother and German father. He cries when he speaks about the death of his second wife, who passed two years ago. He tells us of the many regrets he’s had about his life.
“What about your marriage to my mother?” Richard asks.
“The marriage was a mistake. We were not well suited as a couple,” he says, looking sad.
Richard looks across to me, takes a deep breath. He’s going to ask the question he’s been wanting to for years: “Why did you divorce?”
The reply is one we never expected.
“There was a question as to whether all three of you children were mine,” the man says.
Richard and I are stunned. Our host goes to find some letters from the family. I walk across the room to the couch where Richard has been sitting, and I kiss the top of his head. We talk about trival things for another fifteen minutes, and then we leave.
We drive across town, set up our tent, make a fire, then sit at our campsite eating s’mores and wondering what to do with the information. Clearly Richard’s younger brother is his father’s child because they look alike. It’s Richard and his sister who don’t look like the paternal side.
Months later, Richard is ready to talk with his sister about that day.
“Richard, I’ve been holding this secret for decades,” she says, over the phone, a country away. “Mum revealed it before she died. She didn’t mean to, it just came out. You aren’t his.”
Richard cries, looks out toward the bamboo lining the yard.
“Does anyone know who my father is?”
“Not a word from anyone. It could be one of Dad’s friends . . .”
When Richard puts down the phone, we walk over to Green Lake, the park near our home, and watch the ducklings form a trail behind their mother.
“Damn, baby, life keeps sliding the rug right out from under you.”
“You know, I’m okay.”
“Are you going to try and find him?”
“I’ve never associated myself with having a father. My mother raised me, taught me how to make my way in the world. I don’t need any more than that.”
The regretful man who never raised him, who knows Richard isn’t his child, keeps sending the Christmas cards. Signed Dad.
Later that year, Richard says, “Let’s go somewhere for your fiftieth birthday.”
Because we’ve made it through the brain injury and all of its tricky requirements, I want to do something frightening, to be taken over by something bigger than I am. Richard’s recovery has been a shared fire-walk, but I want a trip that will shred my psychic comfort by making me rethink everything I think I know about who I am.
“I’ve always wanted to go to India,” I say, terrified. Would I lose my mind in India? And would I want to live in that shocking emptiness? I’m drawn to and daunted by the thought of journeying to the land of Kali and Saraswati and Mirabai. A Google search later, we discover that the world’s largest act of faith, the Kumbh Mela, is happening within two days of my birthday. We can’t find any compelling reason to say no.
This year, the Kumbh Mela will take place in Haridwar, where the River Ganga enters the plains from the Himalayas. The Kumbh Mela (Festival of the Pot of Nectar) is the largest human gathering in the world. We’ve heard estimates of eighty million people attending over four months, with half that number present at the festival’s pinnacle. The religious festival draws devotees, sadhus, rishiks, yogis, and tourists from almost every corner of the world. We will be present for the opening snans (or baths).
Hindus believe that the waters of the Ganges turn into nectar on the auspicious occasion of Kumbh Mela. And that a holy dip in the divine waters of Ganga eliminates all the evil and past sins from an individual’s life. Bathing at Har ki Pauri Ghat during the festival is said to purify the inner self. I don’t know if any of these things are true. The last few years have only made me leery of the notion of self-realization. What is exciting about the Kumbh Mela is the chance to be taken on a strange journey, to give up thinking, and instead to experience.
On the day before we are to take the bath at the Kumbh Mela, we discover that the town’s security situation has changed. Our guide, Parikshit Joshi, drives us around the site so we can see what we are in for. The main ghat will be inundated with sadhus and temple leaders, who bring their devotees by the thousands. We’ll be hiking toward Ashti Parvath Ghat, directly south and across the Ganges River from where the sadhus will immerse themselves before dawn the morning of January 14, the first bath of the months-long festival. Because of the need for high security in the region, twenty thousand members of the Indian military, state police, and Rapid Action Force have been brought in to suppress potential riots and terrorist threats. We soon learn that plans may change hour to hour, and that we won’t know until the day of the events what our approach to the site might be.
Mr. Joshi points to the long, fenced, narrow bridges and tells me that if the procession becomes too crowded, security will herd people onto the bridges and then lock the gates, sometimes for hours, until the bathers at the ghats move toward their homes and tents. My husband takes my hand. I have been claustrophobic for years. I avoid elevators, crowds, and locked rooms.
“Think you can do it?” Richard asks. I close my eyes and listen for an inner voice I have learned to trust. Could I overcome my fear if I got locked on a bridge? I look to the man sitting next to me, whom I have been loving for three decades. Something beyond our intellectual understanding has brought us to the Kumbh Mela, and I want to complete the ritual, to understand something about why we have come. I nod, feeling safe, thinking that neither of these men will allow us into a foolhardy situation. When our guide asks us when we’d like to go, our first impulse tells us to get to the Kumbh Mela at the beginning. We must get a quick sleep so we can leave the hotel at four in the morning, to be at the ghats when the sadhus are in attendance, likely one of the busiest times of the festival.
Pilgrims walk many days to get here, often with bare feet or worn sandals. The weather is unseasonably cold in Haridwar, four degrees Celsius at night, and so this is not an easy journey. Many families save for years to come for a bath in their beloved Mother Ganga.
In the hours before dawn, we walk through the dark. No vehicles or bicycles are allowed, only those travelers on foot, and we walk down alleys so black that I cannot see the ground. People emerge from alleys and buildings; people come from everywhere, chanting, moving quickly in the blackness, no lamps or lanterns. Although I have prepared myself for what it might be like to be noticed as Westerners—we’ve had a few days of acclimating to being the new ones in town—I have no idea to what degree those effects will be amplified at the Kumbh Mela. According to our guide, people coming from rural areas may not have seen many Westerners except in the media. As far as I can tell, I am the only Western woman among the millions who have come this morning.
When we arrive at the ghat, we look at the roiling water. We take off our jackets. Richard removes his pants and shirt, strips to his underwear, as the other men do. I become aware of the people around us, watching us while they make their own preparations. I walk down the stone steps into the freezing river just as I see my husband’s body fall below the churning waters. He holds on to the iron rail to keep himself from floating away, for the current is strong. I drop my hands into the river and pour the stream over my head, my skirt flowing around me like a blood-red pool in the steel-grey water. A statue of the destroyer god Shiva glows in the distance and lights the heads of other bathers, who are falling, rising, jumping, bowing, shivering, stilling.
I splash a river salutation. In my mind: Ganges! Ganges! as the loudspeaker blares instructions in Hindi. Over my body flow the ashes of the dead. Where we stand in the river is the place of last night’s puja, a ceremony with fire and flowers that was chanted by a young man and a priest as they performed the last rites, then set the relative’s ashes into the water. I think I am swimming through souls. And then I wonder if I believe in the soul anymore. But there’s a beauty in being here, like what Mirabai has written:
I came for the sake of love-devotion;
seeing the world, I wept.
We towel off, and then we walk around the great display of humanity milling upon makeshift bridges, the loudspeakers blasting instructions, everyone still in the shadows. My hair and skirt are wet from the dip, and my feet are bright red from the cold. Around my shoulders I clench a saffron shawl for warmth. Before we leave the ghats, I ask for a moment to offer my gratitude for everything we have been through together, for Richard surviving the cancer and its challenging treatment, for the brain injury that separated us from who we thought we were, for our children who have learned to be transparent and safe too, for always being taken care of, especially when we were frightened.
I’m not thanking any God, because all of my gods are falling away. Just as I’ve learned that love doesn’t count on anyone’s participation, I no longer need any other to be at home here. No husband, no lover, no children, no God, no Buddha, no mama, no Mother Nature, no Jesus, no Mary and Joseph, no Allah, no Rama, no Krishna. No teachers. No gurus. No Byron Katie, no Eckhart Tolle, no modern-day masters, not even Science. There’s no one coming to save me. I’m alone with the experience of my life. I bend toward the river and lift the water to my head, my lips, my heart.
To forget is not to fail. Forgetting is memory’s raison d’être. “My dreams are like your vigils,” says the man in Jorge Luis Borges’s “Funes, the Memorious,” who has acquired the gift and burden of never forgetting. The man dies of congestion from holding on to useless details. To know what is worth keeping, we have to be willing to let go of what is irrelevant; for us, it’s the myth that we need anything to be different in order to be at peace.
My husband isn’t “the one,” as people like to say in their love stories. Although I’ve spent my life as his scout—seeking answers through romance, religion, expansive substances, spiritual practices, nature, sex, therapy, words—this life as it is happening, this story beyond my control, keeps killing my ideas about it. Not only am I tired of wanting understanding, but also I’m exhausted in my search. This exhaustion makes me pause.
We stop expecting to be happy. We do things we enjoy. I give up the role of the caregiver; he is not the survivor. I stop trying to fix him, or me. I stop trying to “wake up.” When I examine myself honestly, I see that the desire for “awakening” is a desire to transcend reality and separate myself from others who are not “awakened.”
Somewhere along the way, we have gone from railing against disease to accepting it. In our acceptance of his condition, we do not ignore his care. We have the best doctor and treatment possible for this orphan ailment. Every year, Richard gets rigorous checkups. We eat nutritious foods, exercise regularly, and limit our stress. But we stop fighting cancer. We stop using the language of commercial cancer: the battle, the fight, the struggle. We realize that humans tend to heal when they’re at peace, rather than at war. His calm is life-giving, to him and to those of us caring for him. There is no race for the cure. Reality is the cure.
I am no longer hopeful that the old Richard will return. The evolution of his illness has taken my hope, and not in a manner that is without joy. I no longer want to be someone who imagines a better future, someone yearning for things to be different, someone who hopes her way into missing what perfection is, right here, in her face.
My husband’s memories continue to return. Not whole or instantly, as in some Hollywood version, but slowly, through the stories we tell him over and over; through images, and sounds, and tastes, history is woven back into consciousness. Even with the help of what seems like a hundred therapists, some memories hold, while others drop like useless stitches. Our family accepts what has been released by his mind: the ability to multitask, much of the past, the desire to communicate. And we adore what returns: the loving man, the generous man, the man who can fulfill his work as a healer. In our reconstruction of his life we learn about remembrance: it is communal and powerful. And it is also solitary and ephemeral.
Our stories do not include prognosis; we stay rooted in love, we feel more than report. Our lives are rich in folklore and secrets. We refuse stories that don’t include the hot of tears on the cheek, the song of a street protest, the scream of a child’s nightmare, the slick of saliva on skin, the smell of jasmine or sex or apples or sickness, the plain diaphanousness of ghosts, the jolt of a question harkened. We have not kept genealogies, archives, first editions; our stories are passed down in festivals and barbecues, in ordinary objects like blankets, Bibles, ice-cream buckets. There are no memorials to birthing, grieving, getting by. There are no markers to dreams or inspiration or forgiveness, for unlike battles, they occur in the most unlikely places.
Still, we love.
We awake.
We forget.
We begin.
There is no “we” here. I cannot ever know if I experience Richard for who he is to himself. I can only know my interpretation. The work in my life is to come to a brave self-awareness. Even when I love him, even when I adore my memories of him, even when I cherish my idea of a future with him, I am only in relationship with myself. This self who does not really remember, but instead imposes a narrative line upon gaps, images, sensations. I began this journey as the woman who wondered who the man was who arrived fresh from death, swaddled in gentleness and empathy and silence. Now I wonder who I am. I wonder without the desire to know. I wonder at the beauty of this. This wondrous life.