The Complexity of Ambiguous Loss

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.

Comments (16)

So well written, there is no way people who have never been here could understand no matter how much they want to. My son makes gains every day but what I would give for him to have "his life" back.

Yes! There is a lot more studies in the non-closure loss and process when dealing with say a parent with Alzheimer's. Grief over a loss that isn't "quiet a full loss" can lead to guilt, extra sadness, a series of open-ended regrets... People need support and understanding without condemnation or trying to make it all better in these situations. The open daily grief without closure is different to live with every day.

Thank you for addressing this. It’s difficult to reconcile in your “Mom brain” that you are so blessed to still be able to touch, hear, see & love your child but grieve for the loss of that child at the same time. People who say “You are so lucky” or “Do you know how much worse it could have been” have NO idea as you say what it is like to live in this split world with your child, praying for & celebrating every little step forward yet grieving what was...God Bless you & your son.

Carla, THANK YOU for sharing your thoughts and feelings. They resonated with me. Blessings and love to you and yours as well.

I’ve been through a similar journey with my daughter. She is a walking miracle, but she is not the same person she was before her injury. I miss that girl, but I dearly love the one she has become. It’s a fractured journey. Thank you for sharing your heart.

" a fractured journey"- very profound words
Thank you for sharing.

THANK YOU! You have put into words some of what I have been feeling but could not express. You have given a name to emotions I don’t understand.
I am married to a different man than I married 20 years ago. He kinda looks the same and his voice is the same, but he is so very different since the car accident in 2014. I miss that man and realize I grieve for him, yet he is next to me. You have helped me more than you know. Thank you!

Linda, it helps me to know that my words have reached your heart. Wishing you and your husband the best.

I stumbled upon your article while scrolling social media. I was overwhelmed with emotion. I have not been able to articulate what you have written. My son too has suffered much like yours and I struggle with this every day. It's been six years and I feel so guilty. I've never expressed it to ANYONE in my inner circle because no one will understand. Your words mean more than you know. Now I know I'm not crazy or alone. Thank you so much.

Monica...You are not crazy or alone. Wow. I am so thankful you stumbled on the words your heart needed. Much much love to you.

Oh my - this is so beautifully written and expressed. I grieve not the loss of a child but that of a husband and life partner who is with me but is not really. Thank you for sharing a feeling I can relate to.

You are most welcome. I am so sorry for the grief you feel.

Your message struck me to the core. I’m forever amazed how we can move through life so purposefully, oblivious to the fact that some random catastrophic event could change our lives forever at any moment. Hoping for the best for Taylor and your family.

Thank you for taking it in, Laurie. So true, that we move unaware of what might occur.

Thanks for sharing this powerful article! I wept because you described it so well which means two things: we are not alone in this journey and yet everyone’s recovery is a different jagged path.

Praying for the best for Taylor and your family!

Thanks for your words, and sharing your heart. Much love.