When someone is lost in death we accept that their absence will be grieved as a loss. As a society we have even begun to understand that the experienced loss doesn’t just go away in a few months or a year and is grieved over a lifetime.
However, there is still a lot to learn about holding space for people who actively grieve any other significant loss. This holds especially true for those who have lost someone who still lives.
Ambiguous grief is a profound sense of loss and sadness without a death. It is a grief that is characterized by a loss without closure from someone being physically or psychologically absent. Ambiguous loss has even been proposed to be the most stressful and traumatizing type of loss because of the lack of closure it carries.
Let’s focus on parents, or family members, of children who have suffered an acquired brain injury.
Society expects us to be grateful that our person has survived, no matter the challenges they now face, and move on happy for our blessing. We are told “I can’t even begin to imagine what you are going through” paired with “they look so good, I know they are going to be fine” or “at least you still have them.”
What people fail to understand is that part of them has died and, in the same way people grieve death, that part will be mourned. In fact, not only will it be mourned after the initial loss, it will be mourned and grieved again and again as they have to continue to live with that experience and the subsequent related experiences over and over.
When you have to live on with only part of your person there will be things that continue to be taken from you and them because of the loss that has happened. It continues to strike your lives over and over again reminding you that a part you once loved is gone. To compound this, any new memories of joy will share a space with sadness and grief.
So the next time you “can’t imagine” try a little harder. Imagine losing a piece of someone you love dearly like being able to hear their voice or being able to spend time with them unaffected by a medical need or them being able to understand what you are trying to explain to them. Then imagine having to live the rest of your days experiencing and being reminded of that loss. Every memory made at a holiday, every millstone that was made and lost only to struggle to be made again if it can, every birthday, every special occasion, every triggered memory, etc.
Just because we still have our loved one with us doesn’t mean that we should call it good and move on or we are “blessed and should be grateful.” Grieving doesn’t make us ungrateful for still having them it makes us people who are being forced to come to terms with a life that was thrust upon us. A life that now lives in a constant duality of making new memories while you mourn the loss of one’s already made. A life that constantly takes and exchanges one hard thing for another. A life that is now centered upon a continual cost analysis if the benefit outweighs the risk calculating if one decision is worth the consequences that will come with it.
Our grief will never go away. Sure we will develop coping mechanisms to accept this new reality and the loss of not only who our loved one used to be, but the life we once had. This trauma has not only changed our person but it has forever changed us as well.
You cannot simply expect to ride out the initial waves of our grief anticipating them to eventually subside because you attribute their existence to the initial capsizing of our boat. They came and will remain because of the storm that wrecked our ship and threw us in the middle of the ocean at the mercy of the tides. The waves shouldn’t be expected to cease any more than the ocean should be expected to be at peace, as if tides can end and storms don’t ravage the seas.
Love and support us the way we are now, not the way you wish we were again.
