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 (38)

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Hello. My little brother was in a bad wreck two years ago. It was his two year anniversary on the 5th of January. He has a part time job and goes to school so I am proud of him beyond measure. I try not to think about what has happened most of the time because I know I should be grateful he is physically here and is doing well. The pain comes in waves. Some days I think I have adjusted to the new normal, and other days I am overwhelmed with the loss. He is still doing very good but he has to work 10 times as hard as anyone else and I hate that for him. He used to be valedictorian and the captain of the football team and once the wreck happened he could no longer play sports and lost his spot as valedictorian. I can see sometimes he has lost some of his confidence and he thinks something is wrong with him but he is perfect. I find myself sometimes missing the person I used to know though. He isn’t the same person he used to be and I try not to think about it but sometimes it just hits me in the face and I get super overwhelmed. We are taking the same chemistry class and I had to tell him 3 times the same thing last night and when I laid down to go to bed that night I just cried my eyes out bc the old him would have known immediately what to do. I feel guilty for having those thoughts.

This past Nov 25th was the ninth injureversary for our son Kyle. Lynn and I totally get where you are. Our son is still with us, but he is a different son from the one before the wreck. Lynn and I mourn the loss of our son, but give thanks to God for the modified version of him who miraculously survived. The hardest part is isolation from folks who are unnerved by dealing with a TBI. Kyle is battling to rebuild a social network, but it is tough for him due to cognitive challenges. We actually had to get a court order to protect him from a woman who tried to take advantage of his situation. All we can do is love them through the storms, and rely on God's grace to carry us through. You will be in our prayers.....

Dear Nicole, thank you so much for your story. I read it, and all the other comments, with tears pouring down my cheeks. I have felt so guilty for the way I feel - like, if my husband had dies, I could grieve, bereavement is something everyone deals with. But I keep expecting hi to come back, even though deep down I know he won't. And the worst of it is, it's my fault. I should not have ignored the signs ( momentary loss of speech), I should have called the doctor then, or taken him to hospital. Instead I thought he was ok (he said he was), and a few minutes later he fell, smashing his head on the floor. This is something I will have to live with the rest of my life. Please take comfort in knowing it wasn't your fault, what happened to your son, so even though you grieve, you should have no guilt. Thanks again, and to everyone. Take care. xxx

See Martina McClure story on Facebook. I shared your post and tagged her. Your story resonates with our struggles and successes. Blessings

Hi Nicole. I very much enjoyed your article on ambiguous loss - such wisdom in your words. I have worked in the field of rehabilitation for TBI for 30 years now (SLP and Case Manager). I am giving a presentation this July and would love to reference your article if I may have your permission.

Thank you, Debbie. And yes. Feel free to share. Thanks for asking.

We just passed my dear son’s 5 year “injureversary” and I’m sitting here nodding and crying at the words that so eloquently speak what’s in my heart. Thank you for saying what the rest of us are feeling.

Thank you for your blog.My daughter went twice through such trauma and she is still too young only 15 yrs. For me it seem like a new life, she take time to return back in normal life.Each time when i saw her on her hospital bed going through all these ask myself will she return back home.But i can see her trouble and effort.She is much stronger than me and I love her for that.

Your daughter is fortunate to have you. Sending you both love.

I want to hug you for your words, they could be mine, except it’s my daughter. I feel surrounded by people, yet desperately lonely. I am trying to accept what’s happened but I miss my girl so much. I deal with horrible feelings , guilt, wondering if I can love this new version of my girl. Thank you for sharing what I can’t put into words. Your blog has touched me as only a mother could that lives a similar life.

Myanna, your response means so much to me. Thank you for hearing the things that are hardest to say. With love, Nicole

As a survivor 24 years post TBI, I know I'm lucky, but still face the realization that I don't remember who I was before my head injury.

After my accident, I lost most of my friends, and many have passed away since; however, when I do have a chance to meet up with old friends, I regain memories by talking to them. This hasn't happened a lot, but its cool when it does. I have a husband and three awesome kids, a really good job, yet I still feel like a shell sometimes. After so long I decided to accept what happened and make a new me, a new life. This has been one of the hardest issues for me to deal with and I could go on about my other problems here from my head injury, but I'll spare you the details.

I've recently been remembering a lot more from my childhood and it's making me want to do things I used to like to do, which doesn't align with my current life. Ouch.

Bottom line is be supportive of your son. My dad was always there for me. He was there when I was learning to walk again, to brush my hair, he was there when I failed and he didn't give up on me. I've completed college degrees and have been successful. I'm thankful to have my dad in my life. Don't give up and tell your son you have his back. That's what he needs.

I too am nearly 24 years post. I tried to go back to school to finish degree but couldn’t learn from a book anymore. It’s so exhausting in Stacey’s world to this day. Would love to hear more about how you do it.

Thank you for sharing some of your story, Tasha. Our family works hard to be present for Taylor, and will continue to be. We are six years into Taylor's recovery, and still figuring out what life might look like down the road...I have always believed that "little by little, one travels far." Taylor continues to travel, and we are with him each step of the way.

With respect and wishes for your continued recovery.

In reading this beautiful article, I became very choked up, and my stomach was doing flip-flops.

I am a survivor of a brain injury and what is described here from the caregiver, is multiplied many times more by the person who has the loss in their brain.

I miss me. I miss the person who I used to be. I really worked hard to become that person, and really loved the person I grew up to be. I am not the person I was before, I am not the person who went through hell for seven to eight years with the worst parts of a brain injury, but I'm still trying to find out who I am now.

Again, I miss me, my friends, my family, my memory, and all the time that was lost in between.

Please know that I am so wholly grateful to be alive! Every day is a struggle and a challenge, but there was always growth and gratitude.

We, too, are grateful you are alive. Thank you for sharing your honest perspective with us. Celebrating and honoring your journey of becoming....I hear the ache in the words of sharing the things about you that you miss. My son often shares the same sentiments. It is heartbreaking, and I am so very sorry.

Megan, I am so glad you shared your article. It is POWERFUL. I loved every word and image. I plan to share the article on other forums, for those who might have missed it. Thank you!

I try so hard not to get caught in the undertow. My 14 y/o lives in the undertow. He told me his dad is “gone” even though his body is very much still here. He’s not wrong.

The man I married seems to play hide and seek. Once in a while, I catch a glimpse of him and it hurts so bad when he disappears again in an instant. My kids have been to counseling but there’s nothing that is going to “cure” this immense grief we all carry. Then there’s the guilt I feel for keeping him alive on life support when he repeatedly told me he never wanted to be kept alive like that. He was only 45 and I wasn’t entirely sure if he “really” meant it or not. If I could’ve known how he would suffer on this road to “recovery” I would’ve let him go with dignity. If there is one thing this journey has taught me it is, quality of life is far more important than quantity. My husband is my best friend and in retrospect I made choices for him that were based in my own selfish desire to keep him because the thought of losing him was too much to bear. I didn’t realize that the love of my life was already gone. His health is so fragile now. I have promised him that I will let him go when the time comes. Until then I am committed to help him pack as much quality into the time he has left as humanly possible. He’s got my all in. I don’t know if I would feel differently if this were one of our sons instead.

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.

Thanks for reading the blog, Virginia. I hope it helps you in some way.

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.

Interesting. Thankful that there are studies being done, we need support in every area of this...and without condemnation.

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.