Brain Injury, Caregivers

The Walk

“It’s short moments that can define long paths”

“It’s short moments that can define long paths.” A few months back, I took an extended sick leave from work. It was my first true break in 15 or more years, and was barely a week into a new decade in my life, after celebrating a milestone birthday. Full of the fatigue of managing my family’s life but not my own, I booked a visit to my chiropractor. Why my chiropractor? The smell of the peppermint cooling spray that lingered in the treatment room always made me feel safe. She cared for more than my aches and pains. I woefully lamented that I wish someone would just write me a sick note so I wouldn’t have to go to work and could rest. She took one look at me and said “ if you are feeling that low that you carry this secret wish, then you definitely need it.” Without hesitation, she wrote a note for 4 days leave. And then as I continued to dismantle my armour and lose my composure even further, she reached into my bag for the note and slipped a 1 in front of the 4. 14 days leave. Doctor’s orders. She has cared for my husband and myself for the past 10 years, and was the one who helped me navigate him through the medical system to his eventual diagnosis after the hospital lost the original MRI request. She has been our guardian angel, our nurturer, and our cheerleader. She’s in our corner.

Over the years, it has often felt like our corner was empty, or the wrong people were in it. I think what most people misunderstand about the brain injured family is that we don’t really want things. It’s a nice gesture, but things to make our life easier or more beautiful, while well meaning, don’t quite hit the mark. We are too busy juggling everything, compensating, adjusting, and recalibrating every home activity to really enjoy it. Instead, we’d like your time, your patience, your understanding. Ask us how we really are. And wait patiently while we muster an answer. And I’m genuinely sorry if I’ve just offended anyone who tried to help us.

Please let me explain a bit more. Navigating life with a brain injury is inherently isolating as no one can see the damage. And this leaves us feeling so alone, and so guarded in who we can trust to believe our story. It’s hard to equate what they see on the outside—a normal looking person—to the controlled chaos that happens behind the scenes. Memory lapses. Judgement lapses. Exhaustion after minimal effort. Sensitivities. Short tempers. Lost items. Lost time. Lost days. Lost selves.

During this leave of mine, which not surprisingly stretched long past the original 14 days, I started to open the conversation ever so cautiously with a few people. I went away for a night on my own, giving myself the gift of 25 hours of solitude. I rested, sitting in my favourite cross legged posture on the floor. I stared out the window at the wintered mountains and river until my tea grew tepid in my untouched mug. I unravelled a tangled ball of yarn and mused at how fitting the unyielding knots were to my own hidden pain that was so hard to untangle that my life had no choice but to grow around them. I wrote. And I walked. Alone. I was Helena, for 25 long, treasured hours.

At the last hill on one of my trail walks, just as I was regretting having gone so far, I had an inexplicable moment where I imagined with deep gratitude, that I wasn’t walking alone anymore. Each step brought an individual to my side, keeping pace with me until I reached my room again. One by one, the people I needed in my corner joined my walk. All those years of walking alone on the brain injury journey were slowly fading behind me. When I got back to my room, I hastily put those thoughts in verse. I humbly share it here with you, and hope that you too can imagine who walks by your side each day.

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.