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.

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The Unexpected Guest of Compassion

A few months ago, December 1 to be exact, I stood in my world feeling intense uncertainty. It was the feeling of knowing that change was the only option, but the unknown on the other side of that decision held me captive in fear. I imagine many people can relate to being suffocated by our own feelings of judgement for the unfavourable situations we sometimes find ourselves in. We think to ourselves that if only we were better at this, or better at that, or if we could somehow be different, we wouldn’t have found ourselves with our backs to the wall, needing to make a change out of the essential need for self-preservation. There is nothing glamorous about self preservation as there is with going after something our heart has always desired. It’s purely the human need to ensure our mental and emotional survival.

I felt that my unhappiness was my own fault, and therefore my responsibility. When we feel bad for where we’re at, it’s easy to judge ourselves for all the mis steps we took that led us there. We stand on the precipice of making a change, but afraid that others will see the same in us, or perhaps even worse.

Sometimes there are the unspoken intricacies of making a change that get in our way. In my case, it was the silent but ever present voice of grief, and the reluctance to let go of a dream.

I’d been working in a career and solitarily suffering in the name of trying to fulfill my husband’s dream. As the effects of his brain injury became more noticeable with the passing years, it was clear he could not continue in his work. Over the years, I had stepped in to work in partnership with him, and we worked beautifully together in our respective roles. We each needed the other’s skills. But eventually the decision needed to be made that he would retire, and I would continue on my own, reasoning that I had learned enough to manage by myself as well as the two of us had worked together. We hung onto that dream, of fulfilling what he had started and I had joined alongside him.

Out of loyalty to our relationship and to him, I continued, not wanting him to feel his efforts were in vain or fruitless. But everyday was grief to him, to watch me work and not be a part of it. And everyday was grief to me, feeling inside like I couldn’t do this on my own, but I sure wanted to try because trying meant that I cared, and perhaps we wouldn’t have to face this reality of his life.

On that Friday in December, I walked out of my last meeting with a prospective client having abruptly closed my presentation folder and muttering something akin to ‘you know how to reach me if you need anything’ and bolted for the nearest exit. Outside was one of those cold, steady winter rains, and I didn’t even have a mind to put my coat on. The safety of my car was occupying my mind.

Once in my car, I wasn’t just shaking, but my whole body was both trembling but rigid at the same time, as if to rid itself of the mental and physical strain of trying to hold it together all those years, doing something I just wasn’t designed to do. My protective hull was breaching under the stress of repeated battle wounds.

And yet, even in this vulnerable state I felt embarrassed and ashamed that I was reacting this way. Ashamed of how I felt, and not feeling strong enough to handle the intensity that was storming through me. I felt for sure that I was failing, first at my career, and second at handling myself. I was consumed with what people would think of this person who always looked like she had it together: wife, breadwinner, mother, daughter, sister, friend, colleague.

In those moments in my car, I decided that I needed help to look after my own needs. I feared that when I’d tell my husband and my colleagues that I wanted to quit that there would be judgement, because that’s all I had given to myself so far. Telling myself to try harder, get better, and do more. Judgement of my skills, effort, and results.

To test the waters, I first reached out to a local charitable organization’s help line. I’d heard they offered a free hour of telephone counselling, and the anonymity of that appealed to me as I felt it easier to be brutally honest with a stranger first. Having my needs met without concern for a preconceived idea of who they thought I should be was a relief.

As I cracked open the door to my suffering and allowed others a glimpse inside, they flooded me with compassion in all its forms. When I shared my story and asked for help, my family, friends, colleagues and professionals stepped forward with encouragement, softness, and sweetness. Most importantly they offered admiration for the courage in my honesty.

Blinded by my own past experiences and the often louder voices of society that encourages us to be strong no matter what, I had expected judgement for where I was at and for not having made a success of myself. Those voices were silent. Just compassion for a fellow human in pain. My eyes and heart were opened to a gentler place in the world, and I’ve begun to see pockets of compassion in action in everyday encounters.

When we hear those harsh, judging voices creeping in, remember that we don’t have to listen to them by ourselves. The mere act of reaching out and receiving and giving compassion is often enough to snuff them out. There is simply no judgement when compassion is present.