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.


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.


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.


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.