The right words spoken at the right time can send our life on a trajectory of hope, promise, and fulfillment. Likewise, the wrong words spoken at any time can send us on a quick spiral of shame, failure, and loss. Some losses can never be recovered, but sometimes, with a community of kindness, some losses such as self worth can be restored. A brain injury is unique compared to other injuries in its power to change the essence of who you are, and easily takes self worth in its landslide of unintended consequences.
Because my husband’s ABI was indeterminate and undefined for many years, there wasn’t the usual outpouring of sympathy and support that might typically follow a life changing tragedy. No one knew that something horrible had happened to us. Had been happening for years, in fact. It was like we had a silent disease that everyone could see but us. The world treats people like this differently, but they don’t know why they do. The differences they see are just attributed to poor character or poor choices, summing it up as ‘that’s just the way he/she is’. How heartbreaking.
I imagine this is also how someone with any condition that affects cognitive functioning would feel as well. Why is it that if the ‘logical’ cause of someone’s behaviour can’t be seen, the instinct is to lay blame on the individual? Sadly, the survivor and their family are so often outnumbered in this trend of thinking, they start to believe it themselves. It’s a tide of repeated misperceptions against your own reality.
Even highly trained professionals are susceptible to slipping into it as well. If there’s no limp, slow speech, scars, or other outward manifestations of an injury, it’s too easy for the outside world to assume they are seeing a fully functioning person. Instead of asking ‘what happened to you?’ they are silently asking “what’s wrong with you?” And sometimes it’s not so silently asked, injuring the survivor and their family once more as they are unfairly misjudged.
Regrettably, this happens frequently in our society, and not only to those with brain injuries. What we say to those who appear different, who look to be struggling without an obvious reason, can shape not only their day, but their life and hope for themselves.
As a couple, we’ve worked hard in the last few years to restore our sense of Us that was lost during the 10 or so years of my husband’s decline before his diagnosis of hydrocephalus. We each mourned the loss of our selves and our worth because of his condition and how he was perceived in public, both before and after the eventual diagnosis. As symptoms of adult onset hydrocephalus include gait ataxia, dementia, and bladder incontinence, imagine experiencing these ever so gradually increasing symptoms in your 30s and 40s that’s supposed to be your best years, and with no known cause or diagnosis. He once confessed to me in shame that a policeman stopped and questioned him because he looked like a drunk man when he had to stop and pee in some isolated bushes. He was scared, and his injured brain just freezes in a crisis like a traffic jam. He was defenceless against authority. Powerless.
Even after his diagnosis and surgery to stop the damage, no one took us aside to give us a realistic picture of what to expect. The surgery was supposed to be our saviour. We, in our naïveté, thought the surgery would fix his problems. It didn’t. And so we struggled on, thinking it was our fault somehow. The rest of the world thought he looked just fine, so let’s get on with life. Survivors, their spouses, and families know this is far from the truth. But the feeling of being unable to function in any normal way leaves one feeling so much less than. You try to be like a normal couple and family, and your inevitable failure in the impossibility of the task still points the finger at you. Life can be cruel. And so can words spoken by others out of haste for judging.
We’ve experienced both cruelty and kindness, but thankfully one of our last stops to healing our relationship, was a counsellor who knew when to hold back his opinions. After a few months of very obvious and dramatic improvements in the health of our relationship, the counsellor confessed that on first meeting us, he saw a disengaged husband, wondered why I was still married to him, and quite frankly didn’t give our relationship much hope. He really didn’t expect to see us again. But in that first meeting, despite those initial impressions, he showed enough care and concern to hear my husband’s story. Little did he know that was all my husband needed. My husband left feeling like he mattered again, that his story and experience of living with his brain injury was real after all these years.
So even with the human error of judging before knowing, keeping his opinions to himself was the best thing he ever did as it allowed the space for us to eventually show our true selves and our mutual commitment to the health of our marriage. The counsellor didn’t realize that the disengagement he was seeing was one of many manifestations of the brain injury. The brain injury made him unable to connect to me and our pre injury life in a meaningful way. It made him look selfish. Of course it would. If you have to think about how to walk, to follow a conversation, find the right thoughts that sometimes feel fleeting, there is little left for being aware of others. He couldn’t express the love for me that was inside him. His recall of the things that bound our hearts together was sketchy, memories lost and jumbled in time. To an outsider, it would look like he’d lost interest in our relationship. And I admit, sometimes it felt like that to me too. And my anger and resentment would build.
But two things happened as my husband’s experience was validated. He felt hope again. Someone believed him when he said it was hard. But someone also believed enough to quietly throw the gauntlet down and challenge him to do better. My husband’s initial and then continual rise to the challenge of doing marriage well was a surprise to the counsellor given what he had initially observed. But he knew it would be wrong to say such a thing. We were lucky.
Not everyone, professionals included, has always treated us with grace and understanding. It has made us angry on more occasions than I’d like to recall. Some injustices we fought, others we were just too tired to care anymore. If nothing else, our hearts are full of awareness, compassion, and grace for those in our world who need more time, more attention, more help, and more kindness.
Because of our experience as a couple and family living with a brain injury survivor, our words to those around us are filtered through the lens of seeing other’s lives as stories instead of other’s lives as problems. We silently ask what happened to them, and send thoughts of protection and concern to them. We hope others will start to do the same and extend grace instead of shame to those who suffer invisible disabilities. We all need it.