“A friend loves at all times,
and a brother is born for a time of adversity.”
Ambiguous Loss. That is a term you’ve probably never heard before. What does it mean? In the 1970s Dr. Pauline Boss, a professor emeritus from the University of Minnesota and an educator and researcher, introduced the term “ambiguous loss.” She describes the term in her book Loss, Trauma and Resilience as “an unclear loss that defies closure.” She goes on to say that “ambiguous loss is the most stressful kind of loss. It defies resolution and creates long-term confusion about who is in or out of a particular couple or family. With death, there is official certification of loss, and mourning rituals allow one to say goodbye. With ambiguous loss, none of these markers exists.”
She did not say that ambiguous loss is the most painful of all losses. Because let’s face it, loss is loss and it all hurts. Ambiguous loss, however, is unique in that it is an “extraordinary stressor — a producer of uncanny anxiety and unending stress that blocks coping and understanding. It freezes the grief process and defies resolution. It understandably encourages denial of loss. It can lead to immobilization and more crises.” (Boss) Ambiguous loss is loss that is seen in families traumatized by war, terrorism, natural disasters, and chronic illnesses and disabilities. The brain injured, the stroke victim, the Alzheimer’s patient as well as the kidnapped or imprisoned also fall into this category. In my own words, it is hell on earth.
Caring for a child with a brain injury can be a lonely road. There are few who understand. We were suffering from a strange phenomenon that I termed “living in between life and death.” He wasn’t dead, although in some ways it felt like he died the day of his surgery. However, he wasn’t alive either — not really alive, just existing. The person he had once been was a thing of the past. Living in between life and death is an excruciatingly painful place to be. Twice I sought help from different Christian counselors. My hope was to process the grief with someone who understood, but after a few sessions, I was even more frustrated than when I began. I realized that unless a counselor has specific training in brain injury grief and loss, he does not understand the uniqueness and complexity of the pain.
In an article written in Brain Injury Journey magazine, Janelle Breese Biagioni, RPC, states, “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is.”
So, if most counselors don’t fully understand brain injury grief and loss, then how can the friend of a mother of a brain injury victim understand it?
Well, the answer is — they can’t. During the years my son lived with a brain injury, I heard repeatedly how hard it is to be the friend of a person who has experienced this kind of tragedy. I have seen people struggling about whether to bring it up or not bring it up. If they do bring it up, they don’t know what to say because they fear they may say the wrong thing and cause more hurt. I came to the conclusion that is why some do and say nothing and avoid the injured altogether. While it is very understandable why some would react this way, it probably is not the best way to handle it. Handling it this way actually causes the injured more loneliness and pain. Exiting their life translates to “I don’t care about you” even though that may not be true.
How do you relate to the mother of a child who has a brain injury? I believe the first and most important thing is to stay in their life even though it’s hard. It’s not necessary to be there daily or even weekly, but it helps if you just check in from time to time, like once a month, so they know you care. It can be something as simple as sending a text. I had no shortage of friends in my life while my son was alive, and I am grateful for every one of them. Many checked in on me often, took me to coffee or lunch, or just simply sat on the couch and cried with me. They were one of God’s many blessings during that time. I knew I was loved and cared for.
The second most important thing is don’t judge them or what they talk about. There were many times when I probably sounded irrational to some. There were times I was stuck in certain areas of the grieving process like anger, the never-ending pursuit of trying to find answers, or the most painful of all, the loss and change in TJ’s social standing. Although I may have sounded unreasonable, it really was a normal reaction to an abnormal situation. Many times when we don’t understand or haven’t experienced a situation before, we make judgments of others that they’re irrational, frustrating, feeling sorry for themselves, complaining, etc., but in reality these reactions are normal and have to be processed so the one experiencing the trauma can learn to cope with ambiguous loss.
The best thing the friend can do is just listen and say things like, “I’m so sorry this happened to you,” “I can’t imagine how hard this would be,” “I can understand why you would feel that way,” “I just want to be here for you and be a listening ear.” Part of the healing process for the one suffering is being able to talk about it without being judged for the way one feels. If they’re angry, let them be angry. If they’re frustrated, let them be frustrated. If they’re sad, let them be sad. Allow the one suffering to feel the way they feel without correcting them. Over time, as they process through their feelings, they will figure out what they need to do differently themselves. Understand this process can’t be sped up, and there is absolutely nothing you can say that will heal the hurt and make it all better. You are not there to solve the problem; you are just there to be a listener.
My friend Amber did an amazing job at being my friend during the course of TJ’s brain injury. Once a month for three years she showed up with two Starbucks coffees in hand, one for me and one for her. During each visit, she sat and talked with me for a couple of hours. She let me talk about my grief, sadness, and my frustrations. She also shared what was going on in her life which helped me feel connected to the outside world. It couldn’t have been easy for her. My problems were heavy, chronic, confusing, and long term, but she stayed by me, loved me, and truly modeled what being the hands and feet of Jesus looks like. She was a gift from God and was very wise at knowing how to be the friend of a mother with a son with a brain injury.