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.

celiac

Everyday Joy

There is nothing so soul satisfying and a delight to the senses as a freshly baked pastry or dessert from a specialty bakery. You know the ones I mean. It’s not the supermarket bakery, but the ones that take extra care with every step of their creation all the way to their presentation in their display case. Even before you enter, you’re imagining what delectables are awaiting you. Waiting to tempt you and then fulfill your wish as if it were custom made for your tastebuds. Chocolate. Lemon. Whipping cream. Caramel. Mellow or tart. Crispy or smooth. You know you’ll find something to match your mood. There’s only one thing standing in your way: you have celiac disease and can’t even have a crumb of anything in that beautiful display case without doing damage to your own body.

That’s me. Me and thousands of others as 1 in 133 people live with Celiac disease in Canada. Having celiac disease means your body has an autoimmune reaction when gluten is ingested. It doesn’t matter how much, so there is no room for error. It is not an allergy where the reaction subsides and the body returns to normal after the event. With celiac disease, ingesting gluten causes damage to the villi, the small finger like structures that absorb nutrients in the small intestine. If the damage has been undetected for years, it can also take years for healing. Some don’t even know they are causing harm to their body because they have no symptoms. That was me 4 years ago this summer.

I was diagnosed by a smart endocrinologist who was treating me for the onset of my Graves’ disease which had caused me to have hyperthyroidism. Graves’ disease is also an autoimmune disease , and since autoimmune diseases tend to hang out together, he suspected there might be other conditions hindering my recovery. My results were off the charts positive for celiac, both by blood work and biopsy. I had no idea as I’d not had outward symptoms. Apparently about 20% of celiacs are asymptomatic. My husband and I affectionately named my endocrinologist Dr. Doogie because he looked like a grown up version of the teen doctor character from the tv show Doogie Howser. Thank God for smart, young doctors!! Whether I wanted to or not, I now had to make different food choices in my life.

We take eating far too much for granted. All of a sudden my choices were limited, and choosing carefree from the buffet of delectables was not for me. Not just in the bakery, because gluten isn’t just in baked goods. Anywhere they use wheat, barley or rye, gluten is present. It felt like my life became a refrain of ‘No, that’s not for you.’ Sorry, not for you’. Not safe for celiacs. No, nothing for you here. When we are talking about what’s for dinner or planning an outing, my sweet almost 13 year old son always asks ‘What’s mom going to eat? He’s witnessed the pain of my hunger and exclusion. I’ve cried in the grocery store aisles, tired of reading labels to find something safe to eat that didn’t cost a fortune compared to its glutinous counterpart. I’ve walked out of restaurants in humiliation and indignation after they failed to take me seriously.

And because of the fad popularity of being gluten free, even when gluten free food is specifically prepared at a function, Ive been faced with an empty platter because others who think it’s just healthier but don’t have a medical reason got there before me and gobbled it up. So if you live with a celiac or know one, you’d better be prepared for the inevitable wrath that follows if you eat their food and leave them with an empty belly!! Now that’s truly being hangry!!

That’s the dark side of living with celiac disease. It’s one of those invisible conditions that permeates every nuance of our lives. It affects our bodies, our minds, our emotions, and our relationships. So when something comes along that lifts your spirits so high that tears of joy freely flow, you feel compelled to share it wherever you go.

On June 27 I found my joy. Joy in a new, local bakery with a whole display case just for celiacs. It’s the same kind of feeling I get when someone goes out of their way to truly understand celiac disease and presents me with a certified gluten free treat, knowing that anything less makes me feel unsafe. They get it, and they care. My family has been wonderful about this at our get togethers. The beautiful raspberry cake in the photo was especially purchased by my sister at her local gluten free bakery so we could all enjoy celebrating her birthday together. I’m the only celiac in the family. That’s love.

But out there in the world, it’s a different story.

And so I walked into this place expecting to have the usual experience of finding nothing safe for a celiac. And so I trudged the length of the display case, got up the courage to say to the clerk’ I don’t suppose you have anything gluten free here, do you?’

And his face brightened right up, proud to show me what they’d done for people like me. ‘All this’, as he waved his arm down the long row of delicious looking delectables. Shut the front door!!! Tears started leaking out the corners of my eyes.

‘And we bake it all right here, in that separate kitchen behind me’, he said.

A separate kitchen!!! No way!! Not just the usual line of ‘ we take care to make sure no cross contact occurs, but we can’t guarantee’. No gluten in that kitchen. None. I could see into the kitchen!! And more importantly, they wanted me to see.

All this is for me. Behold, the riches laid before me. For me.

And so I placed my order, barely able to get the words out for my tears of joy. I’ve been back at least 3 times already, revisiting the comfort and safety it brings to my life. My husband and son soak up the relief of having found a safe place we can all enjoy together. Our family is once again united in the love of all things sweet.

Thank you to the owners and staff of The Sprouted Oven for taking care of those with celiac disease in our community.

Uncategorized

Alone Together

Alone together. A two word misfit, but that was precisely what our lives felt like as the toll of my husband’s yet undiagnosed obstructed duct in his brain showed its effects in his concentration, memory, and executive functioning. Being alone together was the damage it caused in our relationship. We were together. And we each felt so alone. Alone in the land of no explanations, just the pain of feeling so separate when what we really needed was to hang onto each other.

There was no anger between us or constant fighting. We weren’t distant because we had fallen out of love. He had been slowly losing his ability to connect with people because keeping up with the nuances of conversations and needs took too much energy. A meaningful conversation beyond the basic essentials of day to day living was effort full. Things were often forgotten, misunderstood, or unintentionally ignored. He wasn’t trying to be hurtful to our relationship, but it couldn’t be helped. Neither of us knew. All we knew was the hurt we each privately felt.

I imagine a picture of us with me reaching out, my arms extended and him wanting to reach out, but he can’t make his arms move. Except I don’t know this, and he doesn’t know anything else besides his arms to reach out with. Perhaps he sees me reaching out and catches a glimpse of my signals for connection, or perhaps the signal is lost in the static of his life that takes so much effort. Either way, my reach is unanswered, his response trapped inside. And so we stay frozen in this stance, and the essence of us becomes a snapshot instead of a movie. I wished for someone to come along, snap their fingers, and release us from our snapshot, putting us back into the space where we are connected with the sharing of our energy.

Of all the ways a brain injury affects lives, I believe the loss of our togetherness hit us the hardest. The loss of Us. All the years that the voice in my head kept questioning the validity of our marriage.  The experts call it ‘ambiguous loss’. You’ve lost the person you knew and loved, yet they are still present in your life. It’s just not the same person.

We count ourselves fortunate that once he received the diagnosis of hydrocephalus in 2011 and had surgery to correct the physical malfunction, we’ve seen a slow improvement in his abilities. But, we had lost years as his condition had worsened without knowing the cause. More than 5 years passed with us feeling alone together. I thought having the diagnosis would lead to this blissful state where all the hurt of misunderstandings would magically dissolve. They didn’t, but instead stubbornly remained as a part of our story that neither knew what to do with. Part of that is naturally because even though he had surgery to fix the flow of the spinal fluid, it couldn’t undo the damage that had already been sustained during the years it was undiagnosed. Just as the surgery couldn’t undo the physical damage, it couldn’t undo the emotional damage it had caused in our relationship. That has taken work, time, and faith.

Many days have been difficult and fraught with intense emotions as we struggle to navigate our new way of relating. Acknowledging the loss of Us during those years has been the hardest. It’s the loss of who we used to be as a couple. And yet this is a kind of loss that nobody likes to talk about because it doesn’t really fit anywhere. They see him, and they see me, and they see us as husband and wife. As his physical losses are invisible to the world, so are our emotional losses.

It’s been 7 years since the diagnosis now, and our journey has just entered a Reclamation of Us phase. We can finally look around at all that we’ve been through and hold our heads above water without the feeling of sinking into the grief of the unknown again. We aren’t alone anymore. We are together. We are Us. And we love Us.

In my next post I will share some of the deliberate actions we took in our relationship to create our new sense of Us. And perhaps others have some of their own they’d like to share to encourage others in our circumstances.

Uncategorized

On the Other Side of Broken

“There’s nothing wrong with being you, just wrong fits that make us feel wrong”. Val Nelson

It’s been a time of reflection and introspection in our home these past few months as we navigate the transition of my work to something that will bring out the best in me instead of dragging me under with the current of expectations.

It had been too easy to get caught up in ‘be more, do more, have more’ way of thinking, and I believe there are two groups of people that are particularly vulnerable to this trap. The first group is those who have already felt a loss of an ability, whether that be physical or mental. They likely already feel they have fallen behind somehow and lament what is seemingly unachievable now. The second group is those that are prone to perfectionism and the need to measure up, fit in, and be counted. If those two groups happen to exist in one relationship, it’s a chaotic, elusive task to maintain neutrality in the space where neither feels like he or she truly fits and have an ease of being.

My husband fits into the first group with his loss of some cognitive and physical functions due to his brain injury. It’s a double edged sword for him to be among the high functioning brain injured because the cruelty of it means he feels like he doesn’t belong to either the camp of the able people, or the camp of those whose disability is obvious to the outside world and comes with a tacit understanding and forgiveness from strangers when actions and behaviour are out of the norm.

As for myself, being a quiet, introspective, and thoughtful individual has seemed like a burden to me most of my life—something to be overcome and conquered like a deficit. The world does not easily make way for quiet people, and without anyone to tell me otherwise, I succumbed to the endless and merciless cycle of trying to change myself to be sure I could be valued. Frequent were the comments from childhood through adulthood that I was too quiet and therefore they felt the need to voice that they forgot I was even there. Invisible. Forgotten. The words burrowed their way into my essence.

Until now. Finally, I heard an honest description of myself. One that gave power to my way of being, instead of as a fault that made me wrong and was unfixable. For the first time in my 40 something years, I saw in writing all the things I thought were deficits explained with the pure honesty of someone who understood my nature.

In the course of researching suitable new careers for myself, I took numerous temperament and personality assessments, most notably the MyersBriggs. I was overwhelmed with new found appreciation for myself. I couldn’t hold back the tears of relief and joy as I read my ISFJ (Introvert, Sensing, Feeling, Judging) description. This was me. And it was good.

It told me in black and white, that I am : ‘warm and sensitive; being quiet I will be there for a friend but won’t push. I identify with others easily and approach their problems with care and a willingness to get involved. Being practical and organized, I use warmth to provide help in realistic ways. I am dependable and conscientious’.

I read it over and over, making a new path over the words of the past that had me believing I was flawed because of my quiet nature.

What I perceived as a perpetual weakness was actually a strength, a secret ally that had been there all along. The only difference was that now I was ready and able to actually hear it.

I knew this somewhere in me, but suddenly it felt like it was actually good to be this way, and I wasn’t a misfit. And certainly something not to be changed. If I changed who I am, not only would I lose, but those around me who need people like me in their life would lose too. The world needs quiet, thoughtful people. The world needs me just as I am. With this flick of a switch, my perceived weakness became my greatest asset.

As I let this sink in over a few days, I began to think of how many others might be thinking of themselves as ‘less than’ because their place in the world isn’t obvious…maybe it never was, or maybe it felt like it was taken away from them by life’s circumstances.

I thought about the struggle my husband faces as he now stays home to take care of our son rather than being in the traditional outside world of work. He’s in that no mans’s land of not being good enough to work, but not bad enough to appear that he has limitations.

In the early days after the diagnosis of his brain injury, the toll was no doubt high on him. His role was now a full time parent to a young, sensitive son while I worked outside the home. He struggled with being at home, feeling his contribution had been lessened, and at a loss in the new role at home. Not surprisingly, he felt his weaknesses were exposed. Parenting is no easy feat, even for those with no physical or cognitive limitations.

Our son is a quiet, sensitive and sometimes intense soul. He notices everything, and feels things deeply. That’s a tough place to be when you’re only a toddler and don’t have the vocabulary to articulate what you feel.

The days were not easy for either of them. I’d often come home from work at 8pm and find them both asleep in the armchair. Our son, feeling safe as long as he’s cuddled by Daddy. And Daddy, asleep with exhaustion and afraid to move lest he wake the little boy that had taken so long to calm. Hard days that always began with a distraught child as I left for work, and ended in the armchair asleep together.

But what happened in those hours in between was my husband’s physical and mental limitations turned into a powerful asset, his secret ally as the years passed and the bond between them grew.

I came across a note I’d written in our IPad from those early years after the diagnosis of his brain injury. It was titled Beautiful Loving Acts from Father to Son. I’d listed all the special, but seemingly ordinary things my husband did for our son. Things he did even though he felt like a misfit in his role, like it shone spotlights on all the things he now found difficult because his brain and body didn’t work the way it used to. It was my testimony to my faith in him and I included little and big things:

-Sitting together under a blanket during a thunder and lightning storm

Building zip lines in the garage

-Looking for squirrels together

-Peanut butter fingers

-Making smoothies

-Shopping for Mother’s Day and birthday gifts together

-Planting Seedly together

-Driving around looking for Bobcats and John Deere machinery

-Taking him to the Bobcat store many times

-Picking up tool catalogues for him

-Mind melds

-Sharing puns

-Teaching him how things work

-Tickle fights

My husband and I recently read the note together, and felt the depth of the strength that had arisen from his place of perceived weakness. Profound.

I believe my husband’s experience of those early years after a significant injury of any kind, is common. You feel less than what you were and what you hoped to be.

For him, what he thought of as his greatest weakness, was also actually what made his own life, and our son’s life, stronger. Yes, he has limitations because of his brain injury. But it also took his possible weakness and transformed it into a powerful strength.

For all of us who have ever thought that we are too different to belong anywhere, perhaps all we need is to find the place in our hearts where we can value what makes us different. After all, there are few things better than finding out you were right just as you are.

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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.

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Exploring compassion: an inner journey

Welcome to this space.  This space will be dedicated to exploring the journey of learning to be compassionate—and the first step of this journey is to take care of ourselves.  It’s about protecting and nurturing those parts of ourselves that are inherently designed to protect us, but often get forgotten amidst the busyness of our lives.  The parts of ourselves that whisper to us to slow down, to pause for a moment, and remember who and what we are, asking us to pay attention to ourselves and what we need.  If we don’t take care of these gentle parts of ourselves, they shrivel and we are left wanting and waiting for the pain to ease when we’ve been struck a blow.  It could be as small as a passing remark from a stranger that somehow stings us, or it could be as significant as an unexpected, life altering event.

How, in these moments, do we take care of ourselves and then be able to extend that same care to others?  What have we learned to do when we feel pain?

Certainly for myself, the very thought of always responding with compassion does not come naturally. Compassion was really only for the obviously painful events in life, not for the mundane small hurts or defeats that we incur daily…sometimes even by our own voices.  And yet, this way of being always left me wanting more, but not sure what that ‘more’ would be.
In exploring this idea of finding something more, a different way of being and responding, that didn’t leave me still struck down, I’ve come into the gracious presence of compassion and her sister, self-compassion.

As one writer puts it ‘ to turn around the tendency to be reduced by life’.  In my life, I have known that feeling of being reduced like a second skin.  For those who know me, undoubtedly they’d be surprised to hear that admission from me.  Like most people, I’ve been well trained to put on a brave face believing nobody likes to be around a pity party.  I took this to the extreme, afraid of showing me and all the pieces that hurt.  I’d even hid them from myself.  I’m fortunate I have a good family, married for 25 years and we have a priceless 12 year old son.

But along the way, the silence of an undiagnosed brain injury in my husband chipped away at our hopes and dreams.  We coped and survived, but stayed silent in our pain.  Because on the outside he looked fine to everyone else, to say otherwise somehow felt like a betrayal.  Compassion for us, and for our situation, didn’t even enter our awareness.  How could we explain our life to those on the outside?  When it’s a traumatic event, we are quick to respond and offer kindness.  But when it’s just so everyday, the novelty isn’t there.
We just kept moving forward as best we could, almost like trying to pretend we were a normal family, as if asking for kindness would make us less because the need for it wasn’t self evident. And yet that was precisely what made things harder.

Why are we often quick to give our hearts in compassion when big events strike, but we are not so quick—-and sometimes even go to the opposite end and are judgemental—in the small, sometimes invisible places that compassion is most needed?

That question is the catalyst behind this blog.  Im hopeful that this space will allow for reflection on our experiences and expectations around compassion, and especially how we can use it to take care of ourselves and then share that expanding goodness with others. I’m grateful to those who have encouraged me that this is a worthwhile topic to explore, and giving voice to our need for self compassion will help us find our ground.