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.
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.
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.
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.
His relationship with us?
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.