The Journey of Grief after Brain Injury by Janelle Breese Biagioni

Grief after Brain Injury – How will I survive?

Grief is often hidden because it is misunderstood.

Grief is often hidden because it is misunderstood.

The journey of grief after brain injury is one of life’s most demanding processes. It is long, arduous, chaotic, and exhausting. Before grieving people can comprehend what they are going through or where the path of grieving will lead, they become tangled in this gut-wrenching question, “How will I survive?”

Common Terms

Before getting too far into what the journey of grief after brain injury is, I want to clarify the differences in terms commonly used:

Loss – refers to the event or what happened.

Bereavement – this is the call to grieve and mourn; however, we tend to use loss or specific words like death or suicide.

Grieving – is our internal response to the loss or how we feel on the inside.

Mourning – is giving expression to our grief feelings. Dr. Alan Wolfelt, of the Centre for Loss and Life Transition, calls this “grief gone public.”

The Journey of Grief

Brain injury can be a dark and lonely place.

Brain injury can be a dark and lonely place.

The journey of grief after brain injury is not predictable or orderly. It’s not a concise five-step process but rather a twisted and windy road fraught with pebbles, boulders, and unseen hurdles set to throw you off course. One day you may be going along and feeling as though life is manageable, and the next day, something completely innocuous causes you to spiral into that dark hole you thought was closed forever.

The journey is not one dimensional. It isn’t all emotional, and it isn’t all heartbreak. Grief attacks on four levels: social, physical, spiritual, and emotional. You may feel physically exhausted. Emotionally you are a wreck. Socially you withdraw. And spiritually, you will question, “Why me? Why him? Why us? Why now? Why… why… why?”

The grief journey demands that life be suspended. Grievers turn inward while searching for meaning and understanding of what has happened, why it has happened, and how it could happen to their family. These questions are not easily answered, nor can anyone but grievers answer them. Others may try to answer the “why,” but it’s not their place. Instead, they can help by respecting and holding the space for the grievers, for it is in asking the question “why” that they begin to reconcile the loss.

Those who have walked this path understand the struggle. Those who have not will try to fix it so the grief-stricken person is happy again. Although grieving individuals need support and assistance, they need to work through the process to heal. No one can fix it for them, nor can they go around, over, or under the grief journey. The only way to the other side is to go through it.

The Work of Grieving and Mourning

There is no schedule or timetable for grief.

There is no schedule or timetable for grief.

The goal of grieving is not to get over the loss. It is a myth that time heals all. This implies that if we go through the motions of living and let time pass, a broken heart will mend and we will be okay again. The journey doesn’t unfold like that. Time does not heal all, but rather it is what one does with the time that heals and mends a broken heart. In other words, we must do the work of grieving and mourning.

In the early days of grief, people cannot comprehend what it will take to mend their broken heart. This is true for all types of loss: developmental and transitional losses, loss of a significant other, loss of external objects, and loss of some aspect of self. These losses trigger grief responses and traditional ways of mourning. For example, a funeral is a common event to mourn the loss of another. Yet a funeral is not always appropriate because not all losses such as catastrophic injuries and trauma are as finite as death. I refer to this type of mourning as extraordinary mourning. In other words, it is when the event takes the grieving and mourning to new heights. Brain injury is such an event, and the traditional ways of mourning do not apply.

You may have heard the term ambiguous grief. It’s not a term that I favor when describing the grief journey arising from brain injury. Ambiguous grief is too understated, and well… vague. Those walking this path will affirm there is nothing vague about their loss or their pain. It’s pure hell. The term extraordinary mourning declares that the event and path of recovery are not easily understood and that those impacted by the loss endure unusual emotional distress. This is far more fitting for what I have experienced.

Loss resulting from brain injury puts the individuals and their loved ones on a unique path. Not only will they experience responses similar to other types of loss, but they also walk in a fog as others do when a loved one dies. There is a difference though. If your loved one dies, and you do the work of mourning, eventually the fog begins to lift. With brain injury, everything remains similar, but different. The differences are glaring for the family involved; however, the outside world defaults to the similarities. This leads to a false perception and expectation.

My family experienced this, as have many of the families I have worked with. The outside world saw us as the same family—the mom, the dad, two kids, and a dog. So their perception was skewed. We looked the same; therefore, they expected we should function as the same family. My husband, albeit healed from the physical injuries, was not able to participate in life as he had before. He could not return to work. He was unable to co-parent our children. And he was unable to be my marital partner… he was like a child. To function as the family we were prior to his injury was an impossible feat.

Offer H.O.P.E.

HOPE cover art.jpgPeople in grief not only need to do the work, they need to feel a sense of hope. In finding hope, they are empowered to do the work of mourning, thus leading to healing the four areas of need (physical, emotional, social, and spiritual). When I offer HOPE, I strive to give the following:

H: Healing – give them the tools needed to heal

O: Optimism – with sensitivity, I help them to see that life will return to a sense of good with the best outcome possible

P: Power – I teach them to pace themselves so they have the energy, strength, and courage to do the work of mourning

E: Endurance – I help them to balance their nutrition, rest, exercise, and time for reflection so they can withstand the stress of the journey

In doing the work of grieving and mourning, you move toward reconciliation. In reconciling the losses experienced, you are able to acknowledge what has happened, what has changed, and what the impact has been. As you continue to work through your feelings and emotions and go through the sorrow, you ultimately develop a new self-identity. You are changed because of what has happened. Life has changed all around you and in order to move forward, it’s paramount to embrace the new you. Start by giving yourself a big hug!

About the Author

Janelle Breese, RPC, is an author, speaker, and counselor with expertise in grief, loss, life transitions, and brain injury. She resides with her family in Victoria, BC. She is the author of A Change of Mind: One Family’s Journey through Brain Injury and the upcoming book, Life Losses: Healing for a Broken Heart. Visit her website at and follow her blog at She can be contacted at


Special Collection on Brain Injury Journey Vol 1

Special Collection on Brain Injury Journey Vol 1

This article is from Brain Injury Journey – Hope, Help, Healing, Vol 1, 2014.

4 responses to “The Journey of Grief after Brain Injury by Janelle Breese Biagioni”

  1. Thank you for your comment Catherine. In Canada, our survivors are facing the same issues and lack of supports. It’s fight I fight every day for them. It’s time for a change and together we can be strong voice! I appreciate the journey you are on and applaud you for bravely working to rebuild your life. keep in touch.
    kindest regards,

    Janelle Breese Biagioni, RPC
    Click here to see my #Canada150 project for brain injury awareness

  2. Catz LeBlanc says:

    It’s been 7.5 years since multiple concussions and the fallout continues, no new career, no boyfriend/companion, profound economic stress, no familial or community understanding…the prolonged marathon of what is expected of a person with TBI in America is truly insane.

    I greatly appreciate anyone who realizes the devastation of having their life, their child’s life shattered beyond recognition by someone who didn’t swerve to avoid hitting you….
    Not having “safety net” and living in one of the most affluent countries in the world is beyond tough to reconcile. Having disenfranchised grief is a burden beyond what any highly competitive athlete would ever want to take on as a personal challenge.

    The isolation and especially the disengagement because you look normal is torturous. Not having one’s cognitive function and physical/emotional stamina with the awareness of your deficit is crushing. People cavalierly mention rebuilding one’s life, making a new identity…accepting. What person in their right mind would find it acceptable to have lost much of their life function/purpose/meaning/support/finances/sleep? Isn’t that basically saying “Hey, be happy that you are shell of your former self? Dependent on others, social programs, social security disability…? The death of the person you relate to as yourself but still breathing?”

  3. manzarm says:

    Great information.

  4. Anne Manville says:

    My husband sustained his TBI September 16th, 1997. In reading this article The Journey of Grief after Brain Injury, every paragraph every single sentence, every word washed over me, because this is me and my daughters what we have been living since the day of his Injury…Loss. Our lives changed forever and we continue to go through so much day in and day out with all his problems. It has not gotten easier , if anything more difficulties for him and heart wrenching choices for us. …

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