The Complexity of Ambiguous Loss

Something came flooding over me today like a tidal wave. For a few moments, I lost my footing. I found my mind trapped in the tumultuous waters of ambiguous grief, fighting my way to the surface. I recalled being a little girl at Clearwater Beach. I was in water up to my knees, when a large wave knocked me over and pulled me under. I spun in the salty ocean for what seemed like an eternity, my body brushing against the grainy sand underneath, as I tried to reach the surface. Finally, the spinning stopped, and I emerged. No one seemed aware of what I’d endured.

The emotional equivalent of being caught in the undertow came earlier this week.  I was scrolling through old photos, reconnecting to moments captured in time. Immediately following Taylor’s accident, he appeared injured, swollen and much like you would expect after falling down a flight of stairs. However, he also (still) looked like Taylor.

The furthest thing from our minds when Taylor was in critical condition was taking photos, but at some point we did. Our logic was simple. Taylor would want to see what happened. I wanted Taylor’s permission to take pictures, but he was hibernating in the natural coma his body had produced. I had to assume the photos would be allowed. I never shared them publicly, and if anyone did, they met my inner mama bear.

At the time he fell, Taylor was twenty-one years old; he worked a physically demanding job and was in terrific shape. His muscle tone was from hard work and heavy lifting. His body was well defined. He appeared strong in a way that was natural, not forced. Taylor had always been handsome, now he was growing into a man, and he was exceptionally attractive.

Two particular photos struck me. I took in how Taylor appeared in them. His jawline. His ruddy cheeks. His shoulders. His chest. His arms. His torso. When I looked at these photos, I remembered him. Not just his outer shell, but also the person living inside of that shell. Those images captured my firstborn.

A few shots later are of a changed Taylor, when his eyes finally opened. His hair was growing in. The large dent in his head was exposed. The toll of taking nutrition through a peg tube was obvious. His skin was grey. His jaw hung open in a state of strange release. His arms looked weak—as if they had been holding ten thousand pounds for days.  His eyes were empty. It was as if the spirit inside of his physical body was asleep, and being drawn to the earth below.

These photos could have been of two different people. They represent what ambiguous loss looks like.

When Taylor began to emerge from his coma, our familiarity with him was cloudy. In rehab, we assisted him with things like drinking through a straw, brushing his teeth, general movement and language recall. We weren’t thinking, “Where is the familiar Taylor?”  While I was keenly aware that I was missing a part of our family and a son I loved deeply, I didn’t grasp what was happening. As Taylor emerged, so did the complexity of our loss.

The loss was present, but it was hiding around a corner and felt more like despair. At the end of each day, the person I was grieving was still alive. I could touch him. I could encourage him. I could be with him and speak to him. And yet, he felt far away…because he was. I wondered at times how my friends who lost their children felt. Did it feel anything like this?

Fast-forward six years. How much of Taylor has returned? Does ambiguous loss still play a role in our lives?

The answer is not simple. Parts of Taylor have returned. The return comes in his laughter, the way he shares something, or a subtle reminder of his former self. But in being completely honest, these moments pass quickly. I am not sure if they are real. I can’t capture them.

Much of the time, I am aware of a longing. I feel an ache for somebody I used to know. I question what is worse, feeling this ache or feeling like an awful mother for missing a person who is still here.

A while ago someone asked, “Do you know how much worse this could be?”  I’ve seen the spectrum of brain injury. But I’ve not felt the spectrum. I’ve only felt our journey. I merely witness the journey of others. I’ve wept with mothers whose children have not reached the markers in recovery that Taylor has, but I don’t walk their path. And they don’t walk mine.  

That question began to sit with me in a way that made me uneasy. Within my brain injury family, I practice understanding the idea that just because a path looks less painful, doesn’t mean it is. I also try to avoid comparing scenarios. No injury is the same. No recovery is either. Some survivors have great support, some have none…this is never going to even up, or make sense.

I thought of my reply, “Do you understand what is it like to have your child feel like a stranger? To wonder why people don’t like him? To hear him ask what he must do to get his “old” life back? To have him beg God not to have another seizure, and when he does have to explain it to him? Have you ever kept going when the only thing you wanted to do is quit?”

Or the completely vulnerable response, “It feels like I am being shamed for my feelings.”

Ambiguous loss involves layers of complex, misunderstood, and sometimes shame producing emotions. Don’t get caught in the undertow. When you find yourself drowning in the confusion of this loss, know you will reach the surface again. And know that your grief is yours. You don’t have to defend it to anyone.