Brain Injury

When Half Equals a Whole

Many times in the past month I’ve started to craft a post to share, but I stop because it felt too honest, and that to say what was really on my heart would be an act of disloyalty to my husband, as if I were parading his limitations for the world to see. But the cause of his actions that give me such disappointment does not make the deep sadness any less. It does not soften the blow at all. In fact, sometimes it makes it harder because I also know it’s less likely to be able to change it. And so we must live with it, and have it be a part of us, a part of our story. It’s not something we can just “get over”.

The hurt and disappointment live with me. It is a neighbour to the joy of the necklace he once surprised me with. It’s a soon to be friend of the gentle good night kisses. It’s a companion to our lounging couch conversations.

Most men have a harder time expressing their emotions, but throw in a brain injury that acts like a short circuit when it comes to being able to translate thought into action, and the level of difficulty increases exponentially. I know this. Our road of celebratory events that present opportunities to honour and show his love for me in a way that is meaningful to me are full of not just potholes, but gaping sinkholes that swallow me up in sadness. Each time. And for him there are yellow caution signs all along the route, telling him of the event to come, but the bright headlights of the upcoming event blind him into overwhelmed inaction.

I always hope that maybe this time he will have understood what I need from him. It’s not like I haven’t told him or haven’t explained why it matters to me. In the moment, he understands. I truly believe he does. I also know that he so desires to care for me. His heart is golden. It’s rare to find a man like him who will honestly look at himself.

But knowing this and balancing my longings to be honoured for all I am and do is a precarious position. I know why he became who he is today, but I also know what I desire in our relationship. And the two seem unmovable at times. I’m not able to let go of my longings for acknowledgement and honour from my life partner. And the physiology of his brain makes the translation of thoughts of pride and appreciation for me stuck in his processor. I just see the spinning processing icon…and I wait. And I wait. The waiting is miserable torment. Just let go, I think. That would be the sensible thing. But I can’t. I’m not sensible at all.

I come back and check every once in a while, and sometimes the progress bar has budged. He remembered to send me a text while I’m at work. I’ll take that as a win. He made me a card. Another small nudge in the right direction. But sometimes the icon just spins . No change. At least not that is visible to the human eye. One day, I hope, and yes I’m holding onto that hope, that all this processing behind the scenes all of a sudden clicks, like when you see the progress bar on the update on your computer go from being stuck at 10% and suddenly jump to 50%. I’ll take the 50%. Yes I will. Right alongside all the hurt and disappointment that never really leaves, I’ll take the treasure of his 100%.

Brain Injury

Solace of the Dark

Beauty in Darkness
I love him in the darkness
When the differences fade away
In the dimmest of lights he shines
His voice sure but quiet
Filling the cracks we’ve sealed between us.
I hold to his presen(t)ce.
This is the one I love.

In the daylight of the mundane
Is struggle.
The differences strike with feathers of pain
Invisible pain of staying present
Being focused
The mind lost in what to do
Safety in inaction. Moments slipping by.
Who am I?

If only darkness were forever.
Brain Injury

The Freedom

At the end of my last post The Invisible Truth https://compassionate-voice.ca/2021/08/07/the-invisible-truth/, I alluded to the freedom that comes from calling things what they are. Acknowledgement of the truth brings freedom. Freedom from thoughts that deny how your experience has changed you and how this constant metamorphosis is your new reality, ever fluid and unpredictable. A brain injury doesn’t just physically change someone. It changes who they are. The self they knew, and the self others knew, is now on a new trajectory, a new plane of existence. It is not black and white like the end of life. But it is the end of a life nonetheless.

With this context, it can become easier to manage because treating it like grief and bereavement is something the world is familiar with. So for a moment, I invite you to step into the persona of someone who is grieving. If you are reading this as a support to a brain injured family, try looking at them as a family who is grieving. What do grieving people need? They need acknowledgement of the loss and all the difficulties it brings which in their case is especially challenging because the person who we are grieving is still physically present in our lives. It often confuses people and leaves them unable to act.

For close to ten years, I’ve been carrying the burden of trying to be the normal family people saw from the outside, and allowing people to treat us that way. I don’t know what snapped in me, but my voice has gotten louder in proclaiming our “un normalness”. If they listen and acknowledge our truth, they are a safe person for us, someone we can count on to have our backs. If they try to give us advice without understanding our situation or offer mere platitudes, they earn their place on the sidelines of our lives.

The freedom that awaits on the other side of acknowledgement is profoundly life changing. The lovely little new book titled Opening to Grief: Finding Your Way From Loss to Peace gives us this option:

“Until you stop running, begin to name or acknowledge, and lean into all you’ve been through, and build a friendly relationship with grief, you’ll almost certainly continue to suffer. Alan Wolfelt, author, educator, and grief counsellor puts it this way”…the pain that surrounds the closed heart of grief is the pain of living against yourself, the pain of denying how the loss changes you, the pain of feeling alone and isolated–unable to be openly mourn, unable to live and be loved by those around you” ( p. 26)

With you in grief and in peace,

Helena.

Brain Injury

The Invisible Truth

I’ve found a new sweetness and tenderness in my life from an unexpected source: the honest simplicity of children’s books. Both short picture books with their beautiful illustrations, and novel length stories, have pulled me in to a place where truth is spoken through the eyes of the young. I think our world needs more of that. To read children’s books on hard topics like grief, sadness, fear, and loss is to have your heart comforted like a child climbing into the lap of a loved one. Sweet solace.

Among my favourite authors are Kate DiCamillo and Jacqueline Woodson, both artful masters of poetic description. Interestingly, I didn’t read their books as a child, but as an adult. I experienced first hand the expression that you never read the same book twice, suggesting that each time you come back to read it you have had more experiences through which the story is filtered. The first Kate DiCamillo scene that made me weep with understanding was the description of the bittersweet Litmus Lozenges in her novel Because of Winn-Dixie. With that, I started keeping a collection of what I call Kate Quotes. No one else had yet put into words for me the bitter sweetness we eventually feel as we journey the path of loss.

Next to my copy of Because of Winn-Dixie is Louisiana’s Way Home, another of DiCamillo’s books that cradled my soul and nudged me towards healing and wholeness. In the process of searching for her lost family, Louisiana encounters a Reverend who she hopes can remove the curse she believes she carries. He also happens to be the first person with whom she shares her painful story of losing her family.

Excerpt from Louisiana’s Way Home by Kate DiCamillo

Such impact in the words “a relief to hear somebody call it what it was: terrible.” Without hesitating, I thought about how I’d longed for someone to call my story what it was: hard, frightening, isolating, confusing, exhausting, and yes, just plain terrible. An acknowledgement that what I lived through and live with as I support my husband and his brain injury, isn’t normal, despite how it looks from the outside. Let me be clear that I’m not asking for sympathy.

In an effort to call it what it was, I searched out the MRI CD that documents the reality of my husband’s brain condition. I hadn’t looked at the images since 2011 when we sat in the neurologist’s office and heard the diagnosis of hydrocephalus. He showed us my husband’s brain from a top down view, where the brain looks like a walnut, and how far the overflowing fluid had expanded the ventricles like a blown up balloon over the many years as his condition went undiagnosed. I remember thinking there was more fluid than brain. And then I forever blocked out the image, not wanting it as part of our reality. Survival mode will do things like that to you.

But recently I needed it, desperately. To call it what it was. I no longer wanted it glossed over, minimized, or to be told that I’m so strong, I’m an angel, or that we “just have to keep going”. I wanted to put it in the faces of people who told me he should still seek employment, those who said no to our requests for help, those who told me that fighting through it would make me stronger, and those who gave up on him, not believing he had a reason to struggle.

This is me calling it what it is. On the left is his brain from the MRI last year , and on the right is a normal brain. It’s here in black and white for the outside world to see for themselves. An irrefutable, invisible truth. And yes, it’s a relief to call it what it is. To call something what it is takes courage, brutal honesty, and commitment. But it’s so worth it. On the other side of it is freedom.