One of the distinct markers in the aftermath of my son’s traumatic brain injury (TBI) is the presence of an emotional space I’ve never before experienced called ambiguous grief. Kathleen Gilbert, Ph.D. describes the term well: “Ambiguous losses are those that lack clarity and can lead to sharply different assessments of exactly who or what has been lost. There may even be some question as to whether or not a loss has occurred.”1 For both survivors and family members, it can be challenging to address the path of this type of grief.
I find it important to share our strategies because it’s helpful to uncover coping mechanisms that both help and hinder our grieving process. Here’s what I have discovered:
Do not get trapped in comparing your grief and the circumstances that surround it to how others are processing their journey.
Comparison is said to be the thief of joy. In the space of your grief, there is already a lack of joy, which has been taken over by a depth of sorrow. It’s important to recognize that each of us comes to the table of grief associated with our TBI story with a history of previous experiences and often losses. When we come to that new table, and the offerings of brain injury are placed before us, we are not only found in that moment, but perhaps all of the moments that were leading up to it.
No one comes to the table with the same experiences as you. There may or may not have been other traumas, unexpected losses, or tragedies. When we compare our grief process to that of others, we deny the things in our lives that brought us to the moment we are in and made us who we are. Our grief is going to look different because our lives have been different.
This is not something that anyone can do for you.
I find the words of Rumi both freeing and haunting, “It’s your road and yours alone. Others may walk it with you, but no one can walk it for you.”
Reading those words feels like a stinger to the heart. Sometimes we need for someone to bear the burden for us, it becomes too much. It is heavy, and open-ended grief presents the challenge of not being able to walk away.
For me, there is a stage of acceptance that acknowledges that this grief is not something a loving mother can do for me. My big brother cannot fix my feelings. And the love of my others sons cannot heal the hole in my heart that holds the space of my hopes and dreams that are marked just for Taylor.
People can love you. Friends can support you. But unfortunately, and sadly, this path is yours alone to walk. If I were sitting with you on your sofa right now, as you grieved the loss of someone with a traumatic brain injury, I would hold your hands in mine, hug you tight, and weep with you, but I could not and would not take your grief. It is yours, and it comes from a beautiful place called love. Walking this road is lonely, frightening and hard, but you can walk it, and you can make progress.
Recognize that you are both fierce and fragile.
The life of brain injury is often a roller coaster. Mood swings. Seizures. Managing care. Medical teams. New treatments. Expectations. Disappointments. Everything in between.
Tremendous losses both strengthen and break us. You will have days where your grief brings you to your knees. Sometimes I look at Taylor and feel exceedingly proud of him and how far he has come. Other days I look at him and see merely a shell of who he used to be. That range of emotion can perpetuate guilt and frustration. Grief is confusing, and it may look different from day to day. Some days you will show up for life, and your friends will put a post-it on your desk that sweetly says, “You are Wonder Woman.” The next day, it may be all you can do to show up with your hair and teeth brushed, and as you cry on a friends shoulder, neither one of you denies that you present as the epitome of the phrase “train wreck.”
The most important thing you do on any given day, whether it is having a successful meeting with a nurse psychiatrist or getting to work on time after a crazy caregiving morning, is showing up.
We are all superheroes and train wrecks who co-exist.
We are human, and we owe it to ourselves to keep it real.
Finally, and perhaps the thing I am finding most important for me at the stage I’m in is this: be truth.
Friends and even family may not know what to say. Well-meaning coworkers may unknowingly express the idea that we need to “wrap it up” or “move it along.” Grief is a process. And ambiguous grief is a journey.
Own where you are. Be okay with it. Be safe enough with yourself to express, even years later, “I am still deeply saddened by what has taken much from me, and continues to do so.” You are allowed to feel. The hope is that as you acknowledge, accept, and own your truest, deepest feelings of ongoing loss; the truth leads you to the next place.
I cause myself more pain when I try to ignore how I feel. I have put on the brave face, shown up with a smile when I wanted to crawl in a hole, and done what others expected of me. None of that worked.
A few months ago I hosted a painting night at my house, and my friend painted the words “Be Truth” on her canvas. Those words deeply resonated with me. From now on, I am going to get to the next place by choosing to allow my true feelings to surface and be acknowledged.
1 Source for Ambiguous Grief: www.indiana.edu