Three Truths

Nicole Bingaman and her son Taylor

Recently while completing a cleanout we stumbled across fun memories, lots of clutter, and a neglected pair of socks. I picked up the socks knowing I hadn’t seen them in years. Like many other things they were buried in Taylor’s closet. These weren’t just any socks; they were socks Taylor had purchased to go with his work boots. He hasn’t worn them since before his fall. Finding them triggered reminders of the magnitude of changes that have occurred.

A phrase we hear often is, “Before my fall …” Taylor will remind us of his life before 2012. Freedoms he had, things he enjoyed, memories and moments now lost. Taylor struggles to comprehend the after effects of his injury. He notices the differences. He certainly feels them. But he cannot intellectually grasp them. 

Holding the socks in my hands while staring ahead brought me to a place of undeniable physical and emotional heartache. I missed the years of work they represented. I missed the young man who picked them out and purchased them. But it was deeper than that … I missed it all. I missed Taylor. Sadness washed over my being, enveloping me. No part of me was excluded. 

My blog is titled Permission to Tell the Truth in an effort of honoring my feelings, not denying them. My desire is to be as truthful as possible with those connected to brain injury, while still protecting our family. The actual act of truth telling is challenging. It hurts. Emotions like fear and vulnerability creep up. Here we’ve established a relationship of trusting support. I’d like your continued permission to be open and real. 

I am asking you to read my words knowing they come from a desire to respect the journey of survivors and caregivers, because both of them matter. We are all hurting and healing. There is common ground among us. 

 

Truth One 

We struggle. 

I struggle with guilt about my grief. I ask, “Should I still be grieving? If so, will it ever end?” In my heart of hearts, I don’t think it will. The aspect of ambiguous loss that carries the power is this: we may be grieving the “what might have beens” for the rest of our lives. The jury is out on how best to handle this. However, I am certain carrying guilt around about the sadness and struggle is counterproductive.  

Taylor also struggles. I cannot assume to understand his journey. More importantly, I would never want him to feel bad about his grief. I certainly wouldn’t want him to shame himself because he is genuinely hurting. I work through these times reminding myself as I expand and soften my heart towards others, I also must offer myself and Taylor the same expansion and softness.   

 

Truth Two 

We feel angry. 

I get angry that this happened; so does Taylor. It didn’t have to. Taylor’s fall was a horrible accident. If I could have done anything to have prevented it, I would have. As would every member of our family, including Taylor. When I walk down the stairs that Taylor fell down, I’m reminded we don’t always get a second chance. 

I don’t view Taylor’s survival as a second chance. It is a new journey, a new path he must walk. 

What is equally painful as sharing this truth is knowing what took place. Taylor was intoxicated when he fell. I abhor sharing that fact. Typing the words is painful. It feels as if I am betraying my son. But I’m not. Sharing this truth is a call to action, to love your brain. At twenty-one years old, Taylor never considered what might happen. I wish he would have. I wish those with him would have. I wish in the midst of that night things would have gone differently.  But they didn’t. 

This was an accident … one that may have been preventable. 

 

Truth Three

We grow. 

Taylor's injury has taught me to accept my emotions. They shift. They change. They shrink. They grow. I often feel joy and sorrow in the same day. I don’t exist in a state of sheer sadness, but I do experience dark times.

I’ve had moments of witnessing Taylor go through harsh mood swings, deep depression, a seizure’s wrath, heartbreaking losses, extreme confusion, rejection, and ongoing physical, emotional, and spiritual trials and pain. Sometimes in these moments I sense Taylor’s injury to be a forceful presence so powerful, refusing to be ignored. And in the midst of the worst of these times, I sense my heart sinking through my body. I see my son. I see his injury. And I must make peace with both.

Every once in a while I have this conversation with my husband:  

Me: "Do you think about where Taylor would be in life if his accident hadn't taken place?"

As I say the words I also feel them, along with the burn of my tears. 

Married?
A child?
His career?
His relationship with us?
His brothers?
His friends?
What about his relationship with himself?

Husband: "I try not to think about those things. It makes me very sad."

Me: "Me, too."

In my being I hold the entirety of this shift in our lives. What is gone. What has changed.  The blank space that remains. I feel the missing of Taylor for Taylor and with Taylor. I don’t  like it. It is an indescribable aching/longing/sadness. Taylor experiences these feelings, too. 

Together we glimpse at the dreams held and wonder if any of them will come to pass. We grieve hopes held while still hearing the whisper of yesterday’s prayers. I take a deep breath and try not to let the pain swallow me whole. I also hope it doesn’t swallow Taylor.  

Ambiguous loss is no longer a stranger, and certainly not a friend. This loss can feel like deep betrayal, missing someone who is standing beside you or missing your former self. These feelings are not a betrayal. 

They are love, deep love, working though significant loss. While trying to find the best way to move forward. 

Comments (16)

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Nicole, thank you for sharing your stories here. (And to all the other writers on BrainLine -- I read everything.)

This post in particular resonated with me. Perhaps it's because that we're almost 3 years on from my wife's accident and I'm finally just now starting to process things...

Let me back up.

My wife suffered a severe TBI (amongst other injuries) from a skydiving accident in 2017. I was first told she would not survive; telling our children this (ages 13 and 10 at the time) was the most difficult and heartbreaking thing I have ever done. She made it through the early critical phase, but I was told she'd be in a vegetative state the rest of her life. She was in a coma for almost two months before she opened her eyes.

That moment marked the long, slow struggle of recovery and rehabilitation. The many difficulties, hardships, and joys are very similar to those shared by other survivors and caregivers. The time since then has been filled almost completely with adjusting to our new schedule and lives.

And there have been a lot of changes. I've had to change jobs/employers, we've moved (internationally), and the kids have (of course) changed schools.

For me, personally, those weren't the big changes. The big changes for me centered on my new role as caregiver. Since the accident, our household is essentially a single-parent household. Whereas before, my wife ran everything. She was super-involved with the kids in and outside of school. She managed all the household finances. I do all of that now, and even after a few years of it, I'm barely keeping my head above water managing it all.

It's so much more that just that, though. My wife is almost like having another teenager in the house. She can manage on her own, but she needs frequent monitoring and guidance (and physical assistance). Not having her as a wife -- a partner -- is... well, it's many things. All of them difficult.

We've been married 23 years. She is no longer the same person I fell in love with and married. She is no longer the same person that the kids grew up calling "Mommy". Sure, everyone changes over the years, but not like this. She still has most of her memories (just not the last 7 years) and her likes and dislikes are largely the same. Her personality is completely different. She has always been a strong-willed force of nature -- not any more. So many other differences now. I still love her very much, but it's a very different love.

And this is all only my perspective. I can only write about what *I* know. My kids and wife have very different challenges, struggles, and difficulties will all this.

It's only recently that I find myself ruminating on how she used to be. I've learned that I can't just crack open the door to those thoughts -- it's more like flinging open the floodgates. The sense of loss, of what might have been, what never will be, the memories of things we did that she doesn't remember or conflates to an entirely different memory... I touch the edge of despair.

I can't say that I really get past it. Not yet, and maybe not ever. I just close the floodgates and continue on. Reading the stories of others here has helped tremendously. The raw, truthful experience and emotion are so much more valuable than the trite, everything-is-happy-and-positive stuff I am frequently sent by well-meaning friends and relatives.

Our lives aren't what they once were, and will never be what we once hoped. We have a good life, though. It's difficult, but we're slowly building towards that "new normal" I've read so much about here.

Hi Eddie, Wow. Your words rang so true and deeply resonated with me. I felt your post in my being and I also felt your heartache and heartbreak. Thank you for your courageous and honest response. What you have written could be a blog on BrainLine. It is powerful, and it makes me sad, for all involved.

This part says it all..."I can't say that I really get past it. Not yet, and maybe not ever. I just close the floodgates and continue on. Reading the stories of others here has helped tremendously. The raw, truthful experience and emotion are so much more valuable than the trite, everything-is-happy-and-positive stuff I am frequently sent by well-meaning friends and relatives."

I have met many in the tbi community, caregivers and survivors. And frequently I find myself feeling as if they are heroes in disguise. This is meant to reach your heart...and I hope you can hear it and accept it. You are a hero. To your wife. Your girls. And to humanity. I know it isn't perfect, and probably looks messy at times, but you are winning the war against the greatest grief I've experienced to date, that of ambiguous loss, by showing up. Sharing YOUR truth. And being real.

I am so sorry for it all. And I wish you the very best. Cheering you on. ~ Nicole

I am a TBI survivor of a 15 foot fall 4 1/2 years ago. Everything has changed since then. Thank you for sharing the journey you are on.
Archie DuCharme

Hi Archie,

Thank you for reading. Wishing you the best as your press on.

Nicole

I get all of this. My husband suffered a TBI after a traumatic work fall in 2015. He's not the same, well, neither of us are. Thank you for putting into words some of the things that have been bouncing around in my head!

Hi Gina,

I am so sorry. Thank you for responding. It is nice to know when my words reach someone else's heart.

Nicole

Thank you so much for your article. Our son was injured in 1985 at the age of 21. His girlfriend broke up with him, he started drinking and crashed his motorcycle.
He also suffered a severe fall, totally accidental, in 2000 and suffered another severe injury.

I have experienced all that you describe for many years. As we get older I seem to be more accepting. I do still look for ways to improve Greg's life medically and socially.

We have 3 children and Greg is the last one I would have thought would survive and accept this new norm. He was and still is an adrenaline junky. He was and still has a crazy sense of humor. He had and still does have a kind heart.

He also has a brain that has short term memory issues. He has very poor balance, sometimes double vision, he tires quickly, and sometimes can be inappropriate.

He has taught us alot. He is a huge part of our life's journey. It has taken us many years to understand and accept this.

Know you are not alone.

Such a beautiful response, I feel like I got a glimpse of Greg. He sounds very special. I love your last paragraph. I felt it...and the closing sentence. Thank you for that.

With love and wishes for the best ahead....Nicole

I feel the same way in all of your points. The hurt never goes away even after 11 years with my son's tbi. It's just so cruel for the patient and the family.

11 years is a long time. My heart weeps with yours.

Nicole

Thank you for sharing your thoughts so openly. My 21yr old son was involved in a car accident on SuperBowl Sunday 2019 & spent 123 days in the hospital/rehab before finally coming home on June 6th. He came home in a wheelchair, havent not spoken since the accident & unable to move his right arm. Within a month of being home he began to speak & was able to tell me that he couldnt see out of his left eye, which is something that hadnt been diagnosed at rehab, thankfully his condition was completely reversible (terson syndrome) & his vision was restored after surgery. During this time he also began walking again as well as regained the use of his right arm, which is still an ongoing process. As time went on the therapy appts were reduced & I began to have more time to reflect on everything that had happened, something I hadnt really had a chance to do prior. The more I thought about the son I had raised compared to the son I am now raising, the more I cried, which is also something I hadnt allowed myself to do since driving to the hospital after the accident. I have numerous friends who have lost their children in car accidents & the guilt I feel over grieving for my son who is still with me is overwhelming. I resent that after putting my life on hold to raise my children , I'm now having to care for my adult son. He is my youngest so after my girls moved away it was just him & I, & truth be told he was always my favorite, he was just such an easy kid to raise, & was so much like me that we got along wonderfully. We talked about everything & have shared so many unforgettable memories & now it feels like that was all shared with someone else & I miss that other person tremendously. Physically my son is doing great but mentally his memory is almost non existent & it frustrates me to tears that he is unable to remember all the memories we shared. I've dealt with a lot of loss in my life, my father & 2 brothers have died throughout the years, but nothing compares to the loss I feel right now. I kept hoping time would heal but reading your blogs has shown me that it doesnt & that terrifies me because I dont know how I'm going to live with the pain I feel right now for the rest of my life. I know that you're supposed to let go of the past but I dont want to let go of the memories of who my son was & it scares me to death to lose those memories but it tears me up inside to keep remembering.

Hello friend...I have read and reread your words and I want to say something to make you feel better. For now the words escape me. You have been through a lot of loss, and I have felt in my life with losses as if they piled up. I lost two siblings, unexpectedly, and when Taylor's accident happened I experienced a new level of unbearable grief...So I get it. I do believe there are places of healing and happiness for you and for me. We must allow ourselves to find them, and not stop searching even for small moments. --------- The first years after Taylor's accident were the absolute hardest, and I see a new light at the end of a different tunnel. If that makes sense. Hold onto hope. And remember you have a community that cares. - Nicole

I get Taylor's side................ :(

I am so sorry. - Nicole

Thank you for sharing. It is how I feel (my husband suffered a brain injury in 2012). I know think of him as two different people, the one below and the one after. Both are completely different people.

Thank you for reading. ~ Nicole