Writing for Two

Carolyn Roy-Bornstein, LiteraryMama
Writing for Two

I've journaled all my life. As a girl, I called my journal a diary. I got one every year for Christmas: soft pink ledgers with tiny locks and metal keys. In them, I detailed my middle school years: fish net stockings and Girl Scout meetings. I poured my heart onto their pages in high school: my first kiss with Donny Gatton, tears spilled over Jim Croce's death.

Later in life, I chronicled more salient events: my graduation from college, then medical school, my pot-luck hippie wedding, the births of my children. I wrote in spiral-bound notebooks that are stacked by the dozens on shelves in my bedroom closet. Now, if my husband and I want to remember the meal we had on our anniversary in 1989, I simply open the appropriate book and voila! Details!

"I had the grilled halibut with the Chimichurra sauce. You had the peppercorn pate. Remember?"

Several years ago, all that changed. The ink dried up. My son Neil, then 17, was hit by a drunk driver while walking his girlfriend Trista home after a study date at our house. Trista sustained a massive head injury and was flown from our small town to Boston by helicopter. Bending over her stretcher to kiss her good-bye, I saw her fixed and dilated pupils and I knew she would not make it. Her parents took her off life support the next day. Neil was loaded into an ambulance bound for Boston, as well. At first, the doctors thought his only injury was a broken leg. They ordered a CAT scan of his head as a precaution. That precaution turned out to be a subdural hematoma, a subarachnoid hemorrhage, and a fractured skull. His brain was bleeding.

I gave my husband a list of things we might need in the hospital: clothes for Neil, video games for when he felt better, knitting and books for me to pass the time. My journal? Not on the list. Over the next week Neil had three CAT scans, two leg operations, low blood pressure. He was put on anti-seizure medication. Through it all my pen was silent.

At first, it just didn't occur to me to write. This was life, not art. My boy needed me. I listened to the doctors describe his injuries. I prayed for his recovery. I sat in the waiting room through two operations, too worried to pick up a pen. But as the days stretched out through long hours of physical therapy, as we moved from the ICU to the step-down unit, I knew it was more than fear or worry that paralyzed me. More than sheer writer's block. I knew I would write eventually, maybe even soon. But I needed some distance first. I felt too raw at the moment. Too in the moment.

The British novelist Graham Greene called the necessary distance a writer must have from his or her material "a sliver of ice in the heart of the writer." And I did not yet have that sliver of ice. My heart was still warm with worry for my boy.

We brought Neil home in the dead of winter, a week after the accident. He was thin and weak. He had lost weight. I took a leave from my position as a pediatrician at a community health center. I made Neil high-calorie milk shakes to drink. I kept track of everything he ate and recorded each trip to the bathroom. He was on anti-seizure medications and pain killers. I made charts for those, too, terrified that I would overdose him on Percocets or forget a Dilantin and cause an epileptic attack. I followed behind him as he teetered around the house with his walker.

Neil slept at first on a pull-out couch in the living room; I slept on a mattress on the floor next to him. Later, when he slept in his own room, we set up an intercom system, like parents of infants, in case he woke at night and needed us. My heart ached for him; one moment he was holding hands with his girlfriend walking her home, the next, she was gone — dead and buried before he was even discharged from the hospital. Still the page remained blank.

Notebooks lay all around the house. There was one for my essays, one for my health column for parents published in the local newspaper. There was one for fiction and one for my novel-in-progress. Then there was the one where I kept track of where each piece was submitted, when they were accepted and when they would be published. Now all these notebooks seemed to be calling out to me, beckoning me back. I once went so far as to open up my journal to the last thing I wrote before the accident. But it was like watching a train approaching a woman on the tracks and having no way to warn her: blithely breezy words, then nothing. I slammed it shut.

Partly, my inability to write was due to the sheer amount of work it took to care for Neil each day, and a lack of energy to do anything else. Partly, I wasn't yet sure how to write about the ways my son's life had so drastically changed. So I ignored my notebooks and focused on the tasks at hand: setting up equipment, arranging appointments.

After nearly a month, Neil went back to school. It was still January, but the cold snap that gripped us the night of Neil's accident had lifted. Soggy puddles of snow had replaced the treacherous chunks of ice on our sidewalk. I loaded him into the front seat and tossed his walker in the back. It was the first time Neil had been out-of-doors since we carried him up the stairs to our house the day of his discharge. I looked up at the menacing sky. But Neil's vision was focused downward, negotiating this new terrain with concentration and care.

That morning we had a "re-entry meeting" with the principal, the school nurse, the guidance counselor, and all of Neil's teachers. We worked out a game plan: part time course-work at first, a "book buddy" to help him with his assignments, AP classes scaled back to regular. After the meeting, I gave him a hug and watched him teeter off down the hall with his walker. I longed to follow behind him like I did at home, my arms open wide to catch him if he were to fall. It was like kindergarten all over again.

I went home alone. I puttered around. I threw a load of clothes into the washing machine.

I sat at my dining room table drinking black coffee and looking out the window. It was a cold gray day. Thick clouds loomed over the bare oaks in my yard. My boy, my brain-injured boy, was out in the world, and I was at home — useless, unable to help him.

I knew that, somehow, I needed to gain control of my world again. I grabbed a notebook and pen and began to write. The words came quickly. The phone call. The crash. The cries of pain. The weeks of hard work. Physical therapy. Anti-depressants. I got it all down. My hand cramped. I soaked the pages with tears. I lost track of time. I chronicled everything right up to the events of that very morning. His first day back at school. The meeting. The walker. My fears and anxiety.

At last I was done. I pushed the pen and notebook away from me in exhaustion. My breath was coming hard. I felt as though I'd run a marathon. I looked at my watch, shocked to find that nearly three hours had passed. But I was back, doing what I do, what I've always done: capturing my world in words on a page. Trying to make sense of something senseless. Pulling one word after another from some deep space in my heart.

I got into a routine. Feed Neil breakfast. Drive him to school. Write for an hour. Work around the house. Pick Neil up. I was still attuned to Neil, listening for the phone to ring when he was gone. (Was everything okay at school?) Or, when he was home, waiting for his crutches to sound the alarm of a run-in with a wall. But it was a start. The muscle memory persisted, and writing helped me feel more grounded, more like myself.

One day, a few weeks after I had begun to write again, I came home to find Neil sitting at the dining room table, my journal opened in front of him. My heart skipped a beat. What had I written there? I racked my brain. Neil pulling off his hospital gown. Neil lashing out at the hospital staff. Neil needing to be restrained.

But before I could decide whether to ask him to stop reading my private entries or let him continue, he looked up at me, his face pale and blank as a plate.

"I'm sorry I yelled at you in the hospital, Mom."

My heart cracked. Here was my boy apologizing for something totally beyond his control: disinhibited rants caused by temporal lobe agitation. He didn't know he had yelled at me. He didn't know anything. He was totally amnesic for his entire stay in the ICU. I squeezed his shoulders and pressed my lips to the top of his head.

I knew at that moment that he needed to recover information about those lost days. My journal was filling in the memory gaps for him. He was learning things from the page that I could not bring myself to express out loud: the breadth and depth of my love for him, my deep sorrow at not being able to take away his pain, my guilt at being the mother of the one who survived this terrible accident, my guilt at feeling guilty.

"It's okay, Neil. Read what you want. I'll be here if you have any questions."

But I hovered as he read. I pretended to dust, flipped through books, all the while keeping a wary eye on my son. I worried about what his reaction would be. Embarrassment at his uncharacteristic behavior in the hospital. Anger at me for writing about it. Finally he closed the back cover of the notebook and looked up at me.

"I just like that song," he finally said.

For weeks after the accident, Neil listened to Trista's favorite band, They Might Be Giants, sing a song called "Dead" every morning in the shower. In my journal I had written that I was worried that it was more than coincidence. I worried that it meant he was stuck, obsessing over his lost girlfriend. But here he was reassuring me that this was not the case. Here we were, reassuring each other that it was okay.

I continued to write about our experiences — his experiences as a brain-injury survivor and my experiences as both his mother and a doctor. But I understood that I wasn't writing just for myself. I wasn't writing simply because this was the way I made sense of the world. I was also writing for my son.

For medical journals, I wrote about sharing Neil's experiences with my patients, to emphasize the dangers of underage drinking and drunk driving. For literary journals, I wrote about comparing my grief as the mother of a brain injury survivor to the grief of the mother whose child did not survive at all. And in each case, Neil read what I wrote and let me know whether it was okay to send it into the world or not.

In one essay, I wrote about the doctors testing his hearing in the hospital by rubbing his hairs together in front of his ears and asking him what he heard.

"Beating off," was Neil's reply.

When I asked him whether it was okay to share that, he nodded.

I wrote about Trista's mother, Mary, reading Trista's diary after she died and finding out that Neil and Trista had had sex.

"If Trista were alive, I'd kill Neil," she told me. "But since she's dead, I'm grateful to him for giving her that experience as a woman."

"Can that stay, Neil?" I asked.

Neil caught his breath and blinked as he read, then looked me right in the eye.

"It can stay," he said.

Neil graduated from high school, then college. Things were tougher for him than they would have been before the crash. He went from a kid who got a perfect 800 on his math SATs to one who needed tutors and extra help with his college papers. I tried not to dwell on what Neil might have accomplished without his brain injury and focused instead on how much he had accomplished with it. And through everything, I continued to write. I'm still writing. For both of us.

Originally published in LiteraryMama, January 2, 2011. Used with permission. www.literarymama.com. For more information on the author, Carolyn Roy-Bornstein, go to carolynroybornstein.com.

Posted on BrainLine August 20, 2012.

Comments (3)

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Love this! While the story is far different than that of our brain injury, many of the experiences are the same. Just more proof that the world is full of families that have their own personal brain injury stories. Read ours if interested. www.inspiredrecovery.net
I kept journals too - approximately 14 of them. At first, it was so I could remember everything, because I knew my husband would want to know everything and would need to endlessly discuss it, so he could process and deal with all that had happened to him without his knowledge. Eventually, my journals were just endless pouring out of my pain, my lonliness, my grief. My husband suffered a cerebral aneurysm 22+ years ago. My "husband" died that day, but his body remained alive. He became my forever little boy, not being able to have a conversation because virtually ALL memory was gone. Plus, he couldn't move, let alone walk at first. Through 9 months of hospitalization and 2 and a half years of full therapy, I just loved him and put one foot in front of the other. I had to survive because we had three children - although many times throughout these years, I just wanted/ached for God to take me. The loss and pain have been so great. I still have my little boy who is now back in diapers. He has done far more good for people than I. He is virtually always happy. He sees no age or race. His primary vocabulary is, "God Bless You a Bushel and a Peck and a Hug around the Neck" which he says to anybody and everybody. He kisses all the little ole ladies hands and tells them they are beautiful. As for me, I never learned to live without my beautiful husband. I just survive/exist and pray a lot that God will take me soon. As for my husband, he is healthy and loving. I now know why his Mother enjoyed having him as her son. Only problem is, he will never grow up. Although the 90's were the "Decade of the Brain" - they forgot what to do with the families. I no longer write in those journals. What for?
As a BI physical therapist I love to hear family's experiences. It keeps me grounded and helps me relate a bit better with the families of the clients I'm treating. I appreciate how much longer the road is than the "short" months of inpatient and outpatient rehab that I'm directly involved in. Thank you for your honesty and perspective.