Connected: Resolving Grief after Brain Injury through Words by Dr. Carolyn Roy-Bornstein

Connected by Words after Brain Injury: Dealing wtih the Grief of Traumatic Brain Injury in the Family. 

by Dr. Carolyn Roy-Bornstein

Communicating through grief

Dr. Carolyn Roy-Bornstein

Dr. Carolyn Roy-Bornstein

I imagine I talk to my young adult son with about the same frequency as any other mother, which is to say, possibly once a week, and even then, only when I call him. I suspect Neil and I touch on the same subjects other moms and sons talk about—his graduate school program, my work, the family.

What perhaps makes our relationship different is that I’ve written a book about my son… And he has read it… Multiple times.

To be clear, my memoir Crash: A Mother, a Son, and the Journey from Grief to Gratitude isn’t just a blow-by-blow description of the accident that killed Neil’s girlfriend and left him with a traumatic brain injury. It is, I hope, a thoughtful examination of how one family moves beyond tragedy. Forging obstacles into opportunities and finding grace in the aftermath of adversity.

Neil has read every word of the book. I gave him total veto power over each and every page. I would not be comfortable putting my words out there unless I knew he had approved them.

Reading various iterations of my memoir was not the first time my son had read my writings. About three months after the accident, I came home from running errands to find Neil seated at the dining room table with a book opened in front of him. Not just any book. My journal. I gulped down my panic, trying to recall what I’d written. But before I had a chance to decide whether to ask him not to read my private entries or let him continue, he looked up at me, his face blank as a plate.

“I’m sorry I yelled at you in the hospital, Mom.”

While journaling, I wrote with no thought that my words would ever be read by another soul. My feelings were raw, my heart exposed. Gratitude for Neil’s survival, anger at the drunk driver, fears for the future, all bled together onto the page. Neil was unaware of the disinhibition, confusion and agitation he had experienced in the ICU at Brigham and Women’s Hospital. He was completely amnesic for those early days. So as squeamish as I was about baring my soul to my child—what mother lets her teenaged son read her journal?—I let him continue, my words filling in the gaps in his memory.

Ten years later, I still worry about Neil in a way I don’t over our other son. I mine our conversations for signs of anxiety or depression. In the book, I wrote about how his father and I find ourselves wondering if certain traits—a slow response here, a stony silence there—are a result of his traumatic brain injury or just his personality; who he would have been without the accident. I gave the chapter to Neil to read for approval.

“I wonder that sometimes myself,” he told me, handing me back the pages.

He went on to say that he’s coming to terms with the fact that it doesn’t really matter how he got that way: brain injury or natural development.

“It’s just who I am now.”  Wise words from the mouths of babes.

Not long ago he called me to ask if I could send him copies of his CAT scan results and neuropsychological testing.

“What for?” I asked.

“I’m going to the Disabilities Office to try to get a distraction-free environment for test-taking,” he answered, referring to the PhD program in math education he had recently begun.

I flinched. I assumed this meant he was struggling with academics, drowning in the work or overwhelmed.

But then he added, cheerfully, “I got the idea from reading your revisions, Mom”

Well I’ll be. While the words in my journal had given Neil his memory, the words in my book were giving him ideas—strategies for succeeding in a rigorous environment. Advocating for himself as I had done for him ten years before.

My connection with my son is unconventional. We don’t have a nightly phone chat or even a weekly Sunday dinner. We are connected by words—our names side by side on page after page. It’s a shared story that has found its way into a book and out into the world. It has served Neil as both memory and game plan. The book sits between us, not as an obstacle, but as a conduit, giving us a way to talk about the accident. To rekindle a conversation that had, after ten years, grown cold.

About the Author

Dr. Carolyn Roy-Bornstein is a pediatrician, a mother, and an award-winning writer. She is the author of Crash: A Mother, a Son, and the Journey from Grief to Gratitude (Globe Pequot Press. Sept. 2012.) Her work has appeared in the Boston Globe, JAMA, Pediatrics, Yale Journal of Humanities in Medicine, several Chicken Soup for the Soul anthologies. She has been interviewed on radio and TV and speaks regularly to doctors, nurses, college students and civic groups about traumatic brain injury.

4 responses to “Connected: Resolving Grief after Brain Injury through Words by Dr. Carolyn Roy-Bornstein”

  1. Dawn Congdon says:

    18 months ago, I witnessed my husband’s head slam into the concrete as we were riding our motorcycles home from dinner. Someone ran a red light,& our whole family has suffered the consequences of their carelessness. Having been in my last semester of nursing school, I stabilized him until the EMS came. The journey of that night, being taken into the little room & being told to probably prepare for a funeral or to have preparations for a vegetative spouse has been a roller coaster ride. My “OLD” hubby made it very clear that “IF” something like this happened, he’d rather be dead. My “NEW” man is happier and can’t believe he ever made such comments. I have struggled with the fact that we already lost the man I married, yet I rejoice in the man he has become. Our 2 daughters have had such difficulty dealing with this and the fact that he often is like a little brother instead of a father. Yet, as time goes by, things get a bit better. After a year of drooling and walking around with no emotion, something clicked and everyone else thinks he is back to normal. What is normal? There is no single reply, but I can tell you, there is hope. You just have to pass the ultimate test of having patience. He’s driving, playing music better than ever, helping out around the house, and smiling more than he ever did pre-accident! Now if we girls could just get a normal night’s sleep without him waking us, all would be perfect!

  2. Carolyn, I am touched by your story.I wish your son the best.

  3. Donna J. Raga says:

    Thank you for sharing your story.
    I have a few TBI’S, and live alone and mt journey has been me alone reading paper work repetedly. Your so blessed that you and your son found a way to connect and bring a close bond and a very open “book” way to share and brainstorm to help take the parts of Neil that are still “wired” the same and take them and figure out how to pull the now and the previous persona together enabling him to feel a stronger sense of self. Thank you for sharing your story…> I am sure I would have seen faster results if I had that some one to help put myself back together. I taught special ed. a student grabed my head and shook it and this was just 2.5 months after a car accident. You are both blessed to have allowed God to guide your journey.

  4. Pat Vega says:

    My daughter is the one with the TBI and she is the writer. She was in her 40’s when she developed a bleed at the site of a blood vessel anomaly in the brain stem. The surgery to remove it was successful, but the ensuing TBI was devastating to the whole family. She is now on disability, but it was a long harrowing trip. I used to call her once a week, or drop by, but no more. I wait for her call or visit. I cannot describe the roller coaster I’m on. But I’m grateful for her recovery/coping and advocacy of TBI issues. She has a blog too.

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