The Resilient Brain

Coping with Concussion and Mild Traumatic Brain Injury

Brain Injury Awareness: Grieving the Loss of Self

Before you can start regaining your life, you need to grieve who you once were.

The Importance of Grieving

In the waning day of Brain Injury Awareness month, one of the most crucial, core elements to regaining your life and allowing treatment to work, is for you and your loved ones to grieve the person you once were. For many, this is the most difficult part of regaining their lives. I know this personally as a survivor and as a caregiver for my son and mother, who both had concussions. Also, I know my spouse of 35 years could not grieve this loss and accept the new me. Thus, he moved on to someone else, which was still another loss. I wish this road was simple, however, it isn’t.

The first step is to acknowledge the changed you, the self and what is there. The idea or concept of the self is very complex and many have theorized what it is or is not. This blog is not an essay about the self, rather the objective is to give an idea of why this is the first step to regaining your life. The self is made up of two parts- the real self and the capacities of the self, such as if you’re a good worker, or likable. The real self doesn’t fully develop until adulthood. The sense of self is gained through work and through social relationships, especially family relationships. 

If a brain injury occurs in early years when the self and the capacities of the self are just developing, the loss is much less than for someone who has mostly established their sense of self. For example, if a child is just learning math and has a concussion and has difficulty in learning math, the child doesn’t feel the same loss as the rocket scientist who no longer is able to use or understand mathematics. Yet, the rocket scientist has the knowledge and still has a sense of accomplishment of the chosen career.

The group most affected by the loss of self are adolescents. During this period they are acquiring their sense of self, but have not yet mastered the capacities of the self. The two groups with the highest rates of suicide and self-destructive behavior are adolescence and the elderly. If either group has a brain injury, which often effects the ability for logical reasoning, there is a higher risk of depression and suicide.

The type of depression related to the loss of self is different than clinical depression, which is caused by changes in bio-chemistry. Depression related to loss is very unique. If you have ever been to a funeral, you have seen and experienced the difference. People are crying, eyes look vacant, then someone jokes about the deceased and the person’s mood is able to shift and they start laughing and their eyes twinkle. This ability to shift from sad to happy is NOT seen in clinical depression. Another aspect is being “huggable”. When you are depressed from a loss, people want and do hug you. When someone is clinically depressed there is an avoidance of wanting to hug the person. In fact, going near them feels like walking into a black hole where you will be absorbed into their darkness.

Grieving so often goes unseen or misdiagnosed. This is because many of the symptoms of grief are similar to symptoms of post concussion syndrome (PCS) and/or post traumatic stress disorder (PTSD). To see a chart showing the similarities and differences between the three, click here

The 5 Steps to Grieving the Loss of Self

Step 1: Acknowledgment. Once you’ve seen and accept the loss of self and the capacities of the self, you can allow the natural grieving process to occur.  

Step 2: Identify and express your grief. This difficult process can be done with clergy, a therapist or a friend.

Step 3: Commemorate your loss. This means, if needed, to show pictures, paper, or writing an essay or obituary, as you would if a family member, friend or pet had died. You need to have the wake and funeral for yourself.  This allows you and your family to honor who you were and to allow you to become who you are now.

Step 4: Acknowledge your ambivalence. You have lots and lots of feelings and emotions about your concussion and how it has affected you. You might have wanted to quit your job and the accident now pays you for not working. You knew the person you were and not sure you can love the person you are now.

Step 5: Move on. To do this is to let go of resistance of seeing yourself as a victim or just a survivor. It is now time to be a thriver. You are NOT a brain injured person, rather a person with a brain injury!

I often think of myself as a house that was hit by a hurricane and then restored. The stroke, concussion and brain surgery, destroyed portions of the house. The years of rehabilitation were like adding new lumber and material onto the original design. To all appearances, the restored house is the same, but it is NOT. It is a composite of the old and the new. I look and sound similar to my old or previous self, but I’m really a blend of the old and the new. In the years after my multiple brain injuries, I did a lot of grieving, and I learned to accept me, who I am now.

For more on the grieving process, see Chapter 27 of my book, Coping with Concussion and Mild Traumatic Brain Injury.

Diane Roberts Stoler, Ed.D., is a Neuropsychologist, Board Certified Health Psychologist, Board Certified Sports Psychologist, and Trauma Therapist with over 35 years experience.

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