Ambiguous Grief After Brain Injury

David and his wife smiling in front of pine trees on a sunny day

To be human is to grieve. As members of the human family, we all experience great joy but also grief.

My first real experience with grief came after the sudden loss of my sister-in-law. She was murdered. I was only 28 at the time and had never even heard of the five stages of grief. The only thing I knew was that I felt an inner pain I didn’t understand and could not have prepared for. It took me many months to get my emotional feet under me, only to lose that footing again and again. More than 30 years later, if my mind bends back to that October 1990 day, my eyes still fill with tears. Today I know that grief never ends, it just changes form.

If there is any such thing as traditional grief, our family had a full-on crash course in 2019. It was in 2019 that both my mother and my wife Sarah’s mother passed away. My mom suffered a stroke the year prior and spent her last year in a rehab. My mother-in-law passed away completely unexpectedly in her sleep. One death we knew was coming, the other blindsided us. Both were intensely painful. 2019 is not a year I will remember with much fondness.

Like it or not, the losses of our beloved mothers are part of the natural path that most of us follow. Parents age, they die, and we grieve.

But there is a type of grief that many people experience that is less common, less talked about, but none the less real and painful. It’s called ambiguous grief or ambiguous loss.

Ambiguous loss, by definition, is “a loss that occurs without a significant likelihood of reaching emotional closure or a clear understanding. This kind of loss leaves a person searching for answers, and thus complicates and delays the process of grieving, and often results in unresolved grief.”

In 2010, I was about to get a front row seat to living with ambiguous grief and loss.

On a sunny November day, I went out for my daily bike ride. My life changed completely when I was t-boned by a newly-licensed 16-year-old driver. Local authorities estimated his speed at more than 30 MPH; apparently, he never even hit his brakes. I went through his windshield and was catapulted into a strange new existence. In addition to broken bones, bruises, and lacerations, I had an invisible injury. Though I was wearing a helmet, I sustained a traumatic brain injury. Nothing would ever be the same.

Trying to describe to the uninjured what life is like after a brain injury is exceptionally difficult, but I’ll do my best.

Just imagine if the person you know as yourself one day completely disappears, gone … dead without being dead. My whole personality changed. I acted differently, I thought differently, I spoke differently. In an instant, literally, I was a completely different person.

One of the biggest challenges was still remembering the person I was before my injury. I saw his face every day in the mirror. His voice sounded just like mine. We wore the same clothes and had the same address. I vehemently missed that person with every fiber of my being. As it turns out, I was grieving the loss of who I used to be, although it would take me many years to be able to both understand and articulate this.

My grief was as real as any grief I had ever experienced. I went through denial and anger. The bargaining was tough. What I wouldn’t give to have a do-over on that fated day. What if I’d opted to take a right turn that day instead of a left? With a personality change, I was a stranger to people who knew me. The loss of personal relationships was staggering — including the loss of most of my children. They no longer knew who I was.

Depression was unrelenting. I contemplated suicide for close to a year, firmly convinced that the world would be better off without me. The very act of existing was painful. I sought professional help through a grief counselor. Over the years since, I have told her fondly, many times, that she saved my life, truly.

For a long time, I underestimated my own personal tenacity, and the power of healing that comes with using one’s life experiences to serve a greater good.

During my first year — when loss and sadness defined the very fabric of my being — I attended a support group for brain injury survivors. For the first time, I was in the company of others who understood the sadness and the grief that comes with the loss of self after brain injury. I had found a home, and with that a new footing.

what I expected to be a small online community. That was nine years ago. Today that same community, the Brain Injury Hope Network, serves more than 35,000 members from 60-plus countries. It is one of the world’s largest groups of its kind and exemplifies the power of — and need for — connection.

In the years since my injury, I have, at least in part, become a writer, realizing a lifelong goal. My work, as published in a number of Chicken Soup for the Soul books, has been read by millions. I served as the keynote speaker at a brain injury conference … then another and another. I am proud that my voice has helped others chart their own paths to a new normal.

As the years passed, I changed. No longer do I look at my 2010 accident as the most terrible day of my life. Yes, it will always be the day marking the biggest changes in my life, but so much good has come from it. I have a sense of purpose that I never had before my injury.

So, what about the ambiguous grief/loss that paralyzed me for many years? Today, I find myself not looking back like I did in those early years; instead, I choose to focus on who I am — and who I continue to become. And it is in that very shift of focus that I have found acceptance and a measure of peace … both of which I wish for you today.

Comments (5)

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Thank you so much for sharing your journey with all of us and speaking truth to the very real, and very debilitating ambiguous loss. When my son suffered a terrible fall that resulted in a brain injury and stroke at the age of 20, we were catapulted down that same hell hole and it took a lot of therapy for me to learn to name, process, and embrace grief. I now have the honor of working at Shepherd Center and helping other families through their worst days, months, and years. And we talk a LOT about grief, gratitude, guilt, and grace (the four G's). It helps to share it and I am so glad you did!

I am 24+ years post Severe TBI, a month unconscious, three days at G.C.S. 3 (it goes from 3 -15. is made up of three categories. At level one on each catergory, you got one for being un-responsive.) Resusitated upon arrival at hospital. Bad shit.. blah blah.
Finally out of Hospital services six months after. (3 months in hospital, and 3 months in Neuro Re-Hab unit) Joined a TBI group, and on my first visit, one of the 3 - 4 years survivors explained it was like hitting the reset button. The person I was is gone...However, 24 yrs down, I miss that person so badly! I have everything they learned. And they taught me a lot of skills. Since my crash, I have lost all grandparent, and my Father. Depression is always there. Hell, I have 24/7 non-stop tinnitus in my left ear. When I do die, the theatre is closed. Life as I know it is over. Everyone else dies at the same time. So I live me life simply to see what will happen next. I will never lose respect for someone who took or takes their own life. I am not them! They go through their lives, I don't. I hunt everyday, for a slice of enjoyment in everything that goes on in my life. I will never forget who I was prior to my accident. I know I am not him. But, by living, I live his life as well.

The most important lesson I have learned in my nearly 5 years, is that, within the ambiguous grief that envelops brain injury, there also lies an opportunity to become, or to build, the person you want to be. Without the constraints of the personality development process (that takes a lifetime) that results in you becoming you, you get to experience an event, react to that event without any preconceived ideas of how you SHOULD react, think about it with a mature (albeit injured) brain, and process the consequences. This creates experiential memories that, in turn build to begin to piece together your personality. This can help you feel like you’re taking a little bit of control back when the injury takes so much.

At least that was a concept that helped me hugely, if it helps anyone else, that’s a bonus!


Thank you. Namaste.