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.