Ambiguous Grief (the most confusing of all grief)
“Nothing is softer or more flexible than water, yet nothing can resist it.” -Lao Tzu
Grief is often compared to water; especially ocean waves. It comes and goes. Grief requires us to be flexible. It requires us to flow with it. However, it scares the hell out of us so much, we are afraid we might drown. I’ve often been known to say: grief is the single strongest human emotion there is. It seems to be the one emotion we can’t run or hide from. It finds us, no matter where we go or what we do.
“I want to be like water. Fluid enough to slip through fingers, but strong enough to hold up a ship.” -Michelle Williams
Why is the grief of loss of health, the most emotionally charged health condition I see? It is quite the same for the health loss of a loved one if we are in the unique position of being a caregiver. I start by a simple reminder that anxiety’s very easy definition is “the fear of the unknown.” Anxiety is worry, catastrophizing, angst, rumination, emotional extremes, & futuristic thinking. Anxiety doesn’t live in the present. Our body’s primal ability to go into fight or flight when actual danger presents doesn’t need anxiety. We are skilled human beings; designed for danger…in the moment. We are not designed for handling “what ifs” or “what should be.”
There are many articles and books out there on this very topic; starting with the iconic Pauline Boss, PhD who coined the term Ambiguous Loss in the 1970’s. She helped us put language to the feelings of the grief and loss we experience that is different from bereavement, final grief, or prolonged grief.
Ambiguous grief is the sadness and loss that comes from unexplained, unresolved or unending circumstances. There are two types of ambiguous grief. 1) those that are physically gone, but psychologically there. (i.e.. missing persons, kidnapping, war, etc.) And 2) those that are psychologically gone or changed, but physically there (i.e., new diagnosis, brain injury, stroke, etc.). This involves a loss of health, vitality, or quality of life. It involves the loss of a person from who/how they used to be. It involves the loss of trust in their body’s health and what it used to be.
The biggest challenge with ambiguous grief comes from a person changing quickly, sometimes in one quick incident, and sometimes more slowly through cognitive decline. We remember the person as they were “yesterday,” and we can’t quite make sense of the sudden change. Our memory holds onto the old image. We grieve the person they were, and the person they were supposed to remain. We get confused because we see short glimpses of that person almost every day. And every time we “see” that person again, our grief seemingly starts over.
I have worked for 20+ years as a medical social worker within healthcare systems, and have walked patients through all types of grief. I worked with families in final grief during my years as a bereavement counselor, working in hospice and palliative care. I worked with anticipatory grief during my time working in hospice and palliative care, cancer centers, and neurology departments, wherein I walked alongside those with terminal, but somewhat slow, progressive disorders. However, I have spent the bulk of my career, walking alongside those with health changes that impede the vision of “who I once was;” or in the case of family members or caregivers, “who they used to be.” This includes brain injuries, strokes, new health diagnosis, and chronic pain.
Though, the unique part of my story, comes from my personal story of ambiguous grief…
In 2009, my then, 11-year-old daughter was diagnosed with a slow growing brain tumor. For the next 7 years, we would be in almost constant treatment for both her brain cancer, and the many effects of the harsh treatments to her young, innocent, developing brain. During this active treatment time, there were surely moments of grief. Grief for our family of 4. Grief for our finances, savings, and college funds. Grief for the disruption to our son’s life (age 3 at the time). Grief for what our marriage had to endure. Grief for our life, work, and community stability, due to traveling back and forth to Children’s Hospital Colorado every few weeks. And of course, this was met with intense fear. This fear easily turned into our body’s natural fight-or-flight, and this beautifully protected us all through the many years of survival.
What I wasn’t prepared for was what came after 5 years of active cancer treatment, and the long-awaited words from her neuro-oncology team: “She is in remission. No sign of tumor or tumor activity.” What I wasn’t prepared for was my body’s letdown, and no longer having fight-or-flight to protect me.
Those intense years of Emmy’s treatment caused a significant and acquired, non-traumatic brain injury. I was not prepared for what this meant. I had no idea what the grief I was experiencing actually was. It didn’t make sense. We should be happy, right? She lived! Others celebrated with us, exclaiming things like: “Oh thank god; she lived.” “What a blessing!” “We prayed for this miracle.” Turns out we never felt like she was ok, despite being grateful she lived. It was a confusing time, wrought with wild emotions. It was lonely because no one understood our dulled enthusiasm. And these same champions and prayer warriors certainly couldn’t understand our absolute exhaustion. And we certainly didn’t share this. Our fight or flight had worn off.
Our spunky, athletic girl was now a teen that had little coordination, little energy, working memory processing delays, short term memory deficits, double vision, paralysis of the tear ducts and her optic nerve, and fatigue that caused her to sleep around the clock. Her mood was quiet and blunted. Her friends left her side. She couldn’t go to school. She couldn’t dance or play sports or partake in usual kid activities. And I was not prepared for the grief that came with that.
Without any real intention, we as humans create a mental picture of how things are “supposed to go.” And this was NOT that. If you’ve experienced this, you have likely experienced wild emotions around the gap between how things were supposed to turn out and where they actually are right now. Understanding and accepting that gap is where ambiguous grief falls.
Ambiguous grief puts our bodies into hyperarousal. Ambiguous grief attempts to tell our bodies to go into fight or flight, but there is nothing inherently “wrong.” Our nervous system gets confused. Our bodies are designed for real danger, not perceived danger. Our bodies are programmed to ward off danger through short bursts or surges. In fight or flight, our breath increases, blood pressure increases, and blood is drawn to the muscles, increasing strength. Our pupils dilate and our internal systems shut down to ensure enough energy is going to the very things that make our bodies work harder and stronger.
Our bodies are not designed for long-term stress. As a result of long-term perceived danger, our bodies eventually go into freeze or numbing (also known as dissociation), to preserve the primal fight-or-flight response. We shut down our physical means and activate our emotional-cognitive means. Feelings start to emerge, and there’s nothing to protect us. We feel raw.
Here’s where ambiguous grief enters. Ambiguous grief is confusing. There’s no ending, no clarity, and no understanding. We want answers. We want a solution. And there is none. We want our health back or our loved one’s personality back. We want life to go back to normal, and it’s anything but.
When we took our daughter to an intensive brain injury treatment program, one of our first family therapy sessions was based on ambiguous grief. This word changed our lives and provided a source of comfort to begin our journey towards accepting what didn’t have answers, solutions, or clear boundaries.
Ambiguous grief essentially goes through all the grief stages, but there is no rhythm or routine to this grief. There is no “completion” if the person is alive. The typical stages of grief are: denial, anger, bargaining, depression, acceptance, and meaning making. With ambiguous grief, we experience them all, but it’s very messy. Each improvement or setback; goal achievement or disappointment, unmet or met expectation, sends us back into an emotional tug-o-war. It throws us off into big emotional swings ranging from despair to hope. And the one thing that perpetuates this emotional confusion comes mostly from expectations based on “normal,” and our comparison to others.
Of all types of grief, ambiguous grief from brain injury, concussive syndromes, and other cognitive impairments are the hardest for others to understand. I believe this, simply said, because most don’t understand the brain and all its complexities. After 14 years of living every day with our daughter’s brain injury, I still have days when her fatigue, slow processing and learning are puzzling and also incredibly frustrating. I have days that I cry from watching other young adults soar “normally” through life. I have days that I sit in awe that our life detoured here. I still have days that I am incredibly sad for our son, to have lost what a “full sibling” experience would be like.
And mostly, I have intense sadness for what she must feel deep inside herself, knowing her experience and life are profoundly harder compared to her peers and her brother. Her life has been a series of medical appointments, rehab programs, and complicated self-discovery that doesn’t compare to any normal teen process. Emmy had to learn who she was, all over again. Her usually-creative brain turned rigid and inflexible. Her natural-born gifts required a much different approach. And her ability to feel understood was almost impossible.
Now, all these years later, I finally have days where my pride in her accomplishments overwhelm me. I have days where my heart bursts with a depth of meaning about life, that seemingly none of my peers can relate to. My brain reaches for meaning, acceptance, and understanding, more than it does grief. However, when one change happens, the ambiguous nature of my grief is ready to grip me at any time. I predict this will last my entire lifetime. I must be flexible and learn to swim...
“Flow like water and you will find your way through any rock.” -Unknown
Note: Because of the very nature of ambiguous grief secondary to brain injury, I always encourage my patients to find a treatment team that understands brain injury. There is a lot of misinformation about the rehabilitation process post-concussion or post-brain injury, including the newest of all of these being the neuro-effects of long COVID. There are specialists and medical providers that understand neuro-rehabilitation and I highly recommend this for the best understanding and patience. It is also important to read and continually better understand the injured brain, and why allowing yourself to grieve the ambiguity is critical for healing and acceptance. It is such a personal journey and I encourage you all to talk with your (safe) loved ones and healthcare professionals, about your many complex feelings. It does help.