In the twenty-third year of our marriage, my husband went into surgery for a rare cancer, and came out without any memory of our life. In the hospital that night, gallons of blood pooled inside his body while I watched, trying to compel the nurse to call for a transfusion. After an emergency second surgery, the bleeding was stopped, as was the cancer. But the man he had been never returned.
When Richard woke up, he couldn’t remember things. This formerly gregarious, magnetic man was now withdrawn, and could not find words to speak. He lost his work as a physical therapist. His identity was so shattered that he forgot where he’d come from. Things like his childhood, our wedding day, his children’s births, disappeared. He had trouble with both long- and short-term memory: the RAM and the hard drive were shot.
This is a story that was cobbled together over years of doctors, depositions, medications, musings, and therapies. It took every piece of information from that moment to this one, 6,307,200 minutes and counting, to come to this awareness of what happened. Or rather, one of the ways to describe what occurred: Richard suffered a brain injury. The ways I would explain what happened to him changed as we encountered research and theories, and then they changed again with my own transformation. The mystery of his missing memory and what that meant to our relationship reshaped my sense of self, too. Over those years, being with him would require me to change nearly every aspect of my character. His newly innocent self, one without preferences or need for approval, would begin to liberate me from my fear of judgment.
In those first days after the surgery, everyone at the hospital had a different reason for the disappearance of Richard’s memory, from morphine withdrawal to vitamin depletion to chemo brain. We lived in the cancer hospital for three weeks as he underwent treatment, and before we left, the surgeon pulled me aside and told me he thought my husband had had an anoxic insult. With that clue, we would begin to seek care to return Richard’s former capacities.
In the first year of evaluation and treatment, we slowly started to realize that the mistake by the hospital took my husband’s history, and absented his sense of self, and with that absence, all of his notions of a projected future too. The death of his personality would initiate a metamorphosis for everyone in our family: our two teenage children, and me.
Through his recovery, it felt like the most rational thing I could do was to track the story as his fresh self emerged, one that seemed to exist on compassion, sensitivity, and the kind of generous love I never thought was possible to experience. Before the surgery, Richard had been a complex and intellectually challenging partner, but this new man was a wonder. I couldn’t stop writing down the curiosities of our altered relationship.
I felt compelled to write my story to acknowledge and understand my grief. When an early essay was published, and people encouraged me to write a book, I shoved everything in a file carton in the basement, and said that I wasn’t interested in the past. But the truth was, I was more interested in falling in love with my new husband than in being in relationship with who we were. I needed to set down our history in order to see if we could find our way together. Somehow, every cell in my body knew that our transformation was mutual. And we were lucky; we did live our way into mind-splitting, heart-thrumming, belly-aching love. Again. Once our partnership was secure, the words began to come. Just in time to have to deliver our most intimate reflections to strangers.
Three years after the surgery, Richard was thankfully working with patients, though it was clear that his executive skills would not return. When we knew from a neuropsychological evaluation, and thousands of hours of therapy, that he would never find his way back to his career as a manager, we went to see about a lawyer.
In America, when you file a medical malpractice suit, you hand over your life for examination. The first thing we learned is that not only would we be deposed for our version of the events that caused his injury, but so would our children. We had to provide to the corporate hospital’s lawyers every piece of print or electronic data that included anything about Richard’s illness or brain injury: calendars, journals, notes, doctor’s records, letters and emails to and from friends, bank statements, medical bills, five years of tax statements, therapists’ notes (including those throughout our marriage).
Before I packed up the pile of papers, I sat next to the cherry tree in our front yard, and read every page. I imagined what a rational attorney might make of the letter from the shaman friend who’d had an important dream to share, how the opposing legal team might respond to our college-bound daughter’s grief disguised as pissed-off railing about her father’s new childlike self, how they might judge the ways I constantly and chaotically searched for meaning through books, teachers, and ritual. I wondered what they’d make of the time we had to enter therapy to rebuild our marriage after my years of drinking, how his anger at our rebellious teenage son would be parsed, and found lacking.
I scanned the scrawled pages of a journal I had written at the hospital, usually while I sat on a cot tucked under a tiny window ledge in his cold room, by the acrid light of the constantly monitoring medical machines. I touched the paper where the lettering changed, when I’d handed the diary to my sister to make notes, so I could concentrate on what the surgeon said. During those first unsettling days, I’d written lists of things I wanted to remember, terrified I’d be the only one who would want to hold onto the past. Amongst phone numbers and drawings and insurance contacts are anecdotes I found startling, real.
I feel like a caged animal in this story, he said one night after he stayed awake with terrible tremors.
One day he woke abruptly from a nap and remarked, The intensity has increased. Dr. M must have arrived. I walked into the hall to see a long line of residents following the surgeon out of the elevator.
After two weeks of no food or drink, Richard almost choked in his sleep on a cough drop a nurse had given him to appease his hunger.
“You must have been frightened,” the nurse said, when she heard of the event.
“No,” he said, nodding to me standing at his feet. “She’s here.”
He had never before so simply communicated how well cared for he felt in my presence. Even in those early days, I could sense that though he was losing facts, he was also becoming more able to sense his environment. He had become a delicate innocent.
At first, it was a shock and a devastation that we’d have to hand over all of these intimate moments to the defendants to potentially be used against us. Selling myself as some societal definition of perfect partner couldn’t save me. Nor could being bulletproof. I didn’t have the kind of sparkling past that could have made me a political candidate, or even a politician’s assistant.
That didn’t mean I couldn’t allow myself to be seen. Brene’ Brown says we judge others in those areas precisely where we’re vulnerable to shame. I’d spent much of my life being afraid of coming clean about who I was: a woman who learned to be authentic through making mistakes, trying things people might deem weird, staying curious about my changing relationship. Now I had to risk feeling deeply uncomfortable. If we went to trial, there would be a literal judge and jury who would make our fate. If I didn’t have the courage to lead us into this legal territory, it wouldn’t just be our well-being that was at stake. Doing nothing would mean condoning lack of accountability on the part of the hospital, and potential life-threatening issues for other patients.
As I sat with each vignette, every record, all the therapist’s comments about our family life, a kind of freedom arrived. The different-minded husband that I now lived with didn’t concern himself with what might happen. Along with his limited history came an amazing lack of shame or guilt. If Richard could fearlessly, doggedly return to his career helping people heal their body’s pain, then I could offer up my words in service to his care. I put all the papers in a box and dumped it in the mail.
The requirements of his memory loss, and learning to care for this new man, taught me to write with the kind of candor that allowed me to worry less about what people thought about our choices. It was the luckiest kind of give-away.
