The Emotional Toll of Traumatic Brain Injury

By JoAnne Silver Jones with Hilary Jacobs Hendel

One and a half million people in the United States suffer a traumatic brain injury (TBI) each year. Attention tends to focus on regaining physical health and brain recovery to the extent possible, including speech, mobility, sight, hearing, and often emotional lability. Having lived with a TBI for nearly 13 years, my friend Joanie knows all too well the emotional by-products of this lingering injury; often untreated, often dismissed as “over-reacting.”  We speak about the challenges, confusion, and loneliness of dealing with anger, sadness, and shame.

Joanie was attacked by a violent stranger, a man with a hammer. A mother, a college professor with a PhD in social work, and an activist, Joanie remains one of the kindest and most loving people I know. The phrase when bad things happen to good people comes to mind when I think of what happened to Joanie. Over a decade after the attack, she wrote a book called Headstrong: Surviving a Traumatic Brain Injury, which I highly recommend.

I asked Joanie if she might write down some of her experiences dealing with emotions in the hopes it would help others. Here are her words:

Anger

When the constant head pain abated and bones healed, I began to understand what happened to me, both the precipitating incident and the magnitude of my injuries. And then anger entered. I was angry at the person who attacked me. Angry at the police who didn’t seem to care about me. Angry at friends who asked too few questions and those who asked too many. When I was able to walk outside for short outings, I felt angry at the people who could simply walk, without thinking about what might happen to them, without pain, without caution. When I was able to go back to work, I felt angry at the administration for not giving me the accommodations I asked for. When I was able to go out to dinner, I felt angry at the restaurants for being too loud or too bright. When I got lost, I felt angry that I lost had my keen sense of direction. I felt angry at myself for being injured in the first place. I was so often angry. It took years for me to understand that my anger was misplaced, and blocking my healing and ability to create a new normal.

Sadness

Before that split second of time when traumatic brain injury invaded my world, I didn’t give much thought to the ordinary things that I could do. Since I could do them, I was oblivious to my good fortune. And then, I got lost on my way to the home of a close friend. Places once familiar now felt strange and unrecognizable. I could no longer move seamlessly in the world because my brain couldn’t do the shifts and turns necessary. I felt like I lost a dear friend, this inner self who with her navigation skills, guided me and kept me feeling strong. This loss left me with a constant, underlying sense of sadness.

Words always came easily to me. They were an essential part of my work and of my ability to connect to people. While I still have words, they are more difficult to access in the mornings when I wake up feeling exhausted; and at night when the exertion of simply moving through a day is so tiring. Fatigue and TBI are yoked together. I am saddened by the loss of abilities that gave me a sense of strength and by the tiredness tamping down my energy and dulling my motivation.

Shame

It is not my fault that I have a TBI. I was an innocent victim. I always add the word innocent to clarify that I didn’t cause my injury. And what if I did? Would that make it less onerous?

When someone asks me about my accident, I almost always snap, “It wasn’t an accident.” Even as I stress my innocent victimhood, I often feel ashamed of what happened to me and how the after effects are so palpable, every day, in so many ways.

I become ashamed of the words I can’t remember or the ones I mispronounce, or the times I get confused about where I am, or the times when my emotions boil up and I want to yell at whoever is nearby.

I feel shame when someone hears about the assault and looks at me as if I’m now suddenly fragile and someone to pity.

I am ashamed of my persistent fatigue and the ways in which it interferes with most social gatherings. My shame comes from inside me, not from what’s being said or asked of me. It’s just there, available and waiting for a trigger to bring it to the surface of my consciousness.

Emotions like anger, sadness, and shame are deeply painful. And, if we let them, they open a door to further growth and healing. For example, when we feel anger, we can process with a trauma therapist in safe ways using imagination to fulfill revenge and retribution fantasies in actively healing ways. Additionally, we can use the enlivening energy of anger to help others and make a difference – like Joanie did by writing a wonderful book to help others. When we feel sadness, we are called to fully accept our suffering and the loss of cherished parts of ourselves. Our sadness is our self-love and self-compassion. When we feel shame, we know we must tend to the parts of us still hidden away, mistaking our suffering for a flaw. We are called to help those shamed and wounded parts of us see our extraordinary courage, strength, and on-going contributions with or without our disabilities. We are called to build a new society where each and every one of us understands suffering as a call for more love and connection to ourselves and others.

Hilary Jacobs Hendel is author of the international award-winning book, “It’s Not Always Depression: Working the Change Triangle to Listen to the Body, Discover Core Emotions, and Connect to Your Authentic Self” (Random House). She received her B.A. in biochemistry from Wesleyan University and an MSW from Fordham University. She is a certified psychoanalyst and AEDP psychotherapist and supervisor.

JoAnne Silver Jones was a college professor, and is now a TBI survivor and author.