Brain Injury, Caregivers, marriage, relationships

It’s About You

Recently I was chatting with a woman I’ve met through a support group and asked how she was faring. Her response was that it was hard to accept the now usual state of their marital relationship. In other words, living with her spouse with a brain injury had brought limitations into the relationship that weren’t present otherwise. On its own, the marital relationship is often fraught with the natural challenges of interacting with another person. Doing marriage well as a healthy, fully functioning human being is something that requires effort, dedication, and an intention to seek harmony. When you add the limitations of someone whose inner and outer awareness has been compromised, it’s almost like you’re tempting fate. How can it possibly work well for the health of the couple when things can get so unbalanced? And what can be done to maintain a unified feeling of Us in the relationship when often the attention is on the injured spouse when in fact the relationship has been injured as well.

That was a question we pondered together. For her, it meant being sure to really take time for herself every day. That is not always an easy task to accomplish, even if the injured spouse is high functioning and doesn’t need constant attention as is the case for us. As high functioning as our spouses may be, we are still the lead in the relationship and are the ones to pick up the slack in everything from chores, health, finances, and just life in general. It’s hard for us to feel like women when we have both roles to play despite having a husband. I have had people, even once a counsellor, who try to tell me it’s the same with their perfectly healthy husbands. It’s not. If we left our husbands to their own, they’d eventually end up homeless or in the hospital or worse.

So, taking time to ourselves is actually essential to the overall health of both of us. One spouse commented that she’d just like to go away and be alone. Taking time for ourselves says to us that we matter in the relationship. And who better than ourselves to recognize and honour our value. I’ve realized that when I feel better about me because I’ve taken time to myself to quiet my mind and do things that restore me, then I find I have more grace in our relationship. Having lived through times where due to the effects of his injury I was emotionally bankrupt in our relationship, I had nothing to offer him either. Recognizing that there are new limits in emotional capacity means understanding that we can’t rely a lot on our spouse to be that source for us like they may have been before. And being okay with that.

While we know it’s unrealistic to expect any person, whether they are spouse, friend, or sibling to be everything to us at all times, it can sometimes feel awkward to seek the time and resources to take care of ourselves. At first it might even feel like there is a glimmer of betrayal in the act. If we don’t though, we gradually have less and less to offer, and soon what we do give is out of resentment, not love.

The injury to the brain has many consequences for the married relationship. There may only be one party with a physical or mental impairment, but the effects travel like unseen radio waves into all aspects of the marital relationship. Remembering that it’s not all about the one who has the condition is a start. As the healthy spouses, we matter just as much. Secondly, the Us of the present and future matters. We owe it to our relationship to ensure we are emotionally, mentally, and physically healthy ourselves. In the face of all we encounter each day as we walk the path of living with and loving someone with an invisible disability, we must nurture our own self worth by taking care of our needs for restoration. Just as the body has undergone some healing after the brain injury, the relationship of the marriage will need time and space to heal, and we can help it by taking time for our own emotional rejuvenation.

I’d love to hear from others and how they take care of themselves in the midst of their changing relationship. My hope is that we can help each other with ideas and encouragement.

Uncategorized

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.