Brain Injury, Resources

Three Books That Gave Me Peace

There is love in hearing another’s story.

This is what I’ve come to understand and what fuels the endless empathy for my husband’s efforts to stay connected with me. There’s a common conundrum when an injury makes you feel trapped inside your mind. You have thoughts and feelings that you are desperate to share but can’t muster them all together to clearly articulate them. And so you are silent, but inside your mind is a flurry of jumbled, half formed ideas desperate to be heard.

When my husband was years further along in his recovery, he could finally gather these words and began to open this world that he had boxed up. His words have re shaped how I view those dark years of ours. But how I so wished I could’ve understood it then in our darkness. He continues to remind me that in all those years we lost, he never stopped loving me. But that’s a whole other story to tell.

My wish for you, my reader today, is that in the absence of the words you wish to hear from your injured spouse, that these books might help you to understand their world and just how hard they really are trying to live their life with you. And I also know that it can be hard to even be asked to understand them, because we, as the spouses who carry on with supporting our family, are so often forgotten and cry out to have our plight understood. I really get that. But understanding his struggles was the unexpected path to feeling understood myself.

The first book, “Neither Married Nor Single”is written by psychiatrist Dr. David Kirkpatrick, who tells the story of caring for and navigating the changing relationship with his wife when she is unexpectedly diagnosed with dementia. While it’s meant to help the readers whose lives are impacted by dementia, many of the challenges of having a spouse with a brain injury are easily relatable. It was the first honest account I’d read of the limbo land that we spouses find ourselves in. Yes, we are married. And we love our spouse. But no, we don’t have the same equal partnership anymore. The injury has eroded that equality. And so we feel single. And alone.

It was when I read his wife’s journal entries as she began her decline into dementia that I finally got a glimpse into how he experienced the world as a busy, confusing, and overwhelming place that always taxed his energy. A simple task like a trip to the store for two or three items took extreme planning and courage. I snapped photos of page after page, and wrote out passages that finally gave voice to my private experiences of feeling single in my marriage, something I had previously felt so wrong to feel. It was truth, and not just mine anymore.

The next two books are unique in their first person a perspective of life after a concussion and a stroke. It’s unusual to find such detailed and articulate explanations from the brain injury survivor, told in their own words, for the very reason that an injured brain often struggles with the organization and expression of complex ideas. Each time I read passages in these books I am simultaneously saddened and proud of my husband’s efforts to stay engaged and active in our life. Their stories helped me appreciate just how far we’ve both come, and the depth of our shared experience. If you’ve ever asked the question of “ is it them or their injury?” as I frequently did, these stories will help to clarify that distinction for you in a neutral, safe way.

“The Ghost in My Brain” by Clark Elliot is rich in minute detail of daily life after his concussion. A university professor, Elliot offers first hand documentation of his symptoms ranging from loss of time awareness to loss of balance. He explains how he tried to compensate for all his symptoms, hiding them to all but the untrained eye, and leaving him exhausted. I sighed deeply in relief as I read his battery analogy that helped me understand how my husband could behave so differently despite apparently doing the same activities!

Lastly, “Tell Me Everything You Don’t Remember” by Christine Hyung-Oak Lee is a deeply personal account of her life after her stroke at the age of 33. A writer before her stroke, Lee takes the details of her new life and pieces the patchwork together with deep emotion and deftness. She spares no truth in relating the injustice of the limitations of her new brain. And yet it’s a story of the healing journey we all must travel, whether we are the injured survivor or their partner. Her words reach our soul and our desire to be whole and to be understood.

These writers have each been courageous to share their stories, knowing that the road after a brain injury is often a lonely journey. Only those who have walked it before us can really understand. But we all need people walking beside us too. Maybe these three books will be a companion to you on your journey.

Brain Injury, marriage, relationships

The Dial Tone

I distinctly remember the moment I realized my spouse’s ABI was making it impossible for us to have a meaningful conversation on an important matter. I had tried saying the same thing in many different ways, yet he wasn’t getting my point. He was sitting on our couch and I was standing, looking down at him. I recall how he looked up at me, a bewildered look in his eyes, yet the rest of his face was expressionless. I simply stared at him for a few moments while I took it all in. Our conversation, at that time, was too hard for him to follow. Too many nuances. Too many emotions. Too many ideas. I could see both the pain and the asking for relief. As if he were saying “please stop my pain of trying to keep up with you”. And I stopped, frozen by this new realization that it was unlikely that we’d have a deep conversation anytime soon. I wish I could say that I rushed to embrace him, to tell him it was okay. I was not so noble at the time. I was angry. Who was I supposed to have these conversations with now instead of my life partner of many years?

It would be several years before we learned how to have deep, intimate conversations again. The brain is slow to heal, but it does find a way. My heart was slow to heal too, but it too found a way. But for a long time instead of meaningful conversation we just had a dial tone. At least we could both hear the same dial tone. Everyday chit chat was workable, but anything that required multi layers of logic and simultaneous analysis was a stretch. Filling the void of meaningful verbal exchanges was essential to me. I wrote out a list of ways he already carried me, many of which were simple, everyday gestures. This list is still taped by his mirror. Instead of meaningful conversation, simple touch gestures became our way of reaching deep into each other’s hearts. We didn’t do this intentionally. He would reach behind him to hold my foot in bed, cradling my heel in his palm. I would gently touch his shoulder as I walked by, just to say I’m here. If I didn’t, he’d get scared and think I was angry with him. We would reach out to welcome each other back to bed if one of us had to get up for the bathroom or our beloved but annoying cat. When he’d drop me off at work, our tight good bye embrace was coined a FedEx by him. He was wrapping me up tight like a package to be safely delivered. He’d hold me tight with both his arms, my face happily nuzzled into his chest. We may not have been talking a lot, but we were communicating. We were saying “I’m still here”.

Eventually, with this safety net of comfort, we attempted to talk about some difficult things. I learned to slow our conversations down, which really wasn’t hard for me to allow him that space, as I’m a naturally thoughtful and careful speaker who weighs each thought and chosen word before they meet air. Our meaningful conversations now follow a slow rhythm with the necessary silence in between. It hardly looks like we are having a conversation sometimes, but we know each other’s pace.

In times of extreme stress such as when he’s unintentionally offended me, we resort to texting each other to sort through the conflict. It gives us both space to gather ourselves, our thoughts, and our emotions. It also keeps us from saying something we might regret because we have to see it in print. And somehow, the written word is easier for both of us to process. I just miss that I can’t reach out and touch his hand, but I text him that is what I’d do.

We’ve learned we need a lot of quiet when we want to talk. Not even just quiet, but silence. He genuinely wants to pay attention, and any distraction makes that harder. We’ve also learned when to recognize that he’s reaching his limit, and we can wrap things up without me taking it personally. Before, he used to just bail without any explanation, leaving me hanging with my words unheard like an old fashioned telephone that had fallen off its cradle, the coiled receiver cord dangling loose.

While I realize that many of these difficulties in communication such as distractions, overwhelm, and just plain misunderstandings are common whether you have a brain injury or not, their impact on the marital relationship leaves a crater sized hole where only a gap might be in a marital relationship where both partners are healthy.

While I’ve never forgotten that look of sheer bewilderment in my husband’s eyes, neither will I ever forget the feel of his palm cradling my heel as we fall asleep side by side.

Brain Injury, marriage, relationships

The Unspoken Question

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.

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.