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.


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.


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.