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

A Letter to My Son

Days became words, months became sentences, and years became paragraphs.

It’s been almost two months since I’ve put together any words to share with the world. My apologies for those of you who might have been curious if I had more to say on the intricacies of life. My writing is something I take great pride in, whether I hear back from my audience or not. I’m careful and deliberate in the crafting of each piece before I choose to publish it. The time and space required to create worthy works has been scarce in my life lately.

I could blame it on pandemic fatigue, parental fatigue or employee fatigue, but it all comes down to this for me: my deep written expression needs time to develop itself. A few snatched minutes here and there doesn’t produce the same work as sustained concentration in solitude. My mind needs to slow down, to be silent from the outside concerns, to make space for the depth to surface.

Unfortunately, too much has been crowding my mind and soul lately. It began with an innocent question asked by my son that deserved a fair and honest answer. As he recognized that his fear of the unknown and the anxiety surrounding it was affecting his enjoyment of life, he wanted to know if there was any particular event in his history that may have been the beginning of his anxious responses. In my head I thought “Just your whole life, kid. From the time you were born into a home with a parent with an undiagnosed brain injury, uncertainty was everywhere.” Of course, this is not what I said. Instead, I fled to the kitchen. He followed me, unaware of the swirling emotions in my body that he’d just set loose. Those things that I thought I’d kept tightly wrapped and secured away from the eyes and ears of the outside world.

Vaguely sensing my discomfort, he opened his arms wide to me, beckoning with our shared gesture of an offer for a hug. I obliged, and held my tears in check until I could get away to privacy. Oh, my child, my dear son, if only you knew. But it wasn’t for him to know. Or maybe it was.

I struggled with how much of our story and it’s variations because of his dad’s brain injury could safely be revealed to him. Factual, but not frightening. I had done my best to shield our child from the pervasive and persistent uncertainty that inevitably comes when a parent isn’t able to fully participate in life because of the damage to their brain. But inside, I was anxious, stressed, and scared as I managed our life single handedly, with no place to show my own frailty. I wondered how well I’d done.

And now his question, asked as a young man learning about himself, not a young child to protect, hung out there waiting for an answer from me: Was there anything in his life that had happened to make him experience anxiety before? It was time. Time to tell him a little about my perspective of raising him while struggling to understand and compensate for the effects of the cognitive and physical struggles of the man we both loved dearly as a husband and a father.

And so I wrote my son a letter, explaining the journey of the past 15 years and it’s detours along the way. I was careful to be factual, but not frightening. This was for him. But it was also for me. To acknowledge what we had lived through, and live with today. It took me a couple weeks, with many stops and starts as I wrestled with sharing my pain. In the end, it was only about two pages long. All those moments compressed and refined into 1000 words. Days became words, months became sentences, and years became paragraphs. Our life in two dimensional black and white. Clean, processed, and technical. It could be deleted, tossed in the garbage, or stored for later retrieval. It was now his choice. By answering his question honestly and thoroughly, I gave him a choice. But it was now his choice to make as a young man, not my choice as the mother of young boy.

What did he choose? For now, he skimmed it to get a sample of what he needed to fill the gaps in his understanding of his childhood. He remembered the part about me being sick with Graves’ disease and I stayed at my parents overnight needing to be near someone to care for me. He’s kept the letter for later retrieval. I last saw it on his bedroom floor, with his other papers from school, next to his pile of clothes. We haven’t spoken of it since, but it has opened the box of our shared story. It’s our story. And it’s truth will not be denied anymore.

Brain Injury

Of Mice and Young Men

Words don’t need to be seen to be felt.

Sometimes our kids surprise us with their insight. In my last post, I explored how our son experienced his relationship with his dad who has a brain injury. I’ve wondered many days and sometimes sleepless nights how our son views his home life. Does he feel the differences in our home compared to the homes of his friends? Does he wish he could feel more secure in his dad’s abilities? Does he resent having to compensate or give up things that other families seem to enjoy because they just aren’t practical for us?

Most importantly, I’ve wondered if I’ve done enough in raising him as my energies for many years were slim as I was the go to person for everything in our home. It’s kind of like being a single parent at times, but without the credit because the outside world sees a spouse and second parent in the picture.

Usually, we get these important questions answered in the most unexpected ways. Thanks to our cat’s lacklustre mousing skills, I got my answer this week. Our cat originally came to our family all those years ago as a reward( or bribe, depending on who you ask)for our son to sleep in his own bed. It turns out our cat just wants to play with the mice he finds. He brings them in for us to see, but they’re just playing dead. So for the past couple weeks we had an elusive mouse in our home that evaded capture by us or our cat. We knew this little creature was in the area of our oven because we saw our lovely cat staking out near the stove, just waiting for his playmate to appear. Obviously he could hear him rustling around under there!

We set traps with tasty peanut butter and raisins. Nothing. Day after day this went on, with our cat sitting guard beside the oven. Nothing was luring out this mouse. Our cat eventually gave up too, and we all thought it must’ve finally escaped back outdoors. Until it happened. The unthinkable odour when we turned on the oven to bake muffins. Was that cremated mouse in progress?

I began cleaning the oven from the top down. No sign of anything. I pulled it out and looked in every dark corner with a flashlight. Still nothing. Desperate, I enlisted my teenage son who got all the superior mechanical aptitude genes from his grandfather. This kid of ours has been wrangling drills, hammers, and power tools since the age of 3.

Together, screw by screw, we dismantled our oven in search of the odour, praying we wouldn’t find a cremated rodent. Places that hadn’t seen the light of day in 15 years were being exposed. Remember when I said I was the go to person for everything in our home? Sometimes, things like a perfectly clean oven just weren’t important.

“It’s pretty sticky in places!” my son politely said to me as he took off another panel, revealing a previously hidden ickiness.

“Well, I was kind of busy raising a family pretty much on my own all those years”. I tried not to sound offended at his observation of my lack of cleaning efforts.

And then he spoke his heart, with his head still ducked down behind the back of the oven as he loosened another screw.

“I think that family turned out pretty good, and now they are here to help you with these things”.

These words from the sensitive, wise heart of my 15 year old pierced the darkness of doubts I carried that despite all the odds against our family, I’d succeeded in the most important way all those years when I felt so alone.

That’s good enough for me.

And no, we thankfully didn’t find a cremated rodent. But after peeling back the insulation, we discovered where the little creature had been and what he’d been up to: he’d had a stash of our cat’s kibble in the cozy burrow he’d made in the insulation. How he got that far in and how he stole that much kibble from our cat’s dish is a mystery. Thankfully the source of the terrible smell was burning cat kibble and not dead mouse. I think our cat must’ve been snoozing during the mandatory mousing class! But now my son and I have an oven to put back together, and thanks to our cat, my heart is full of happiness knowing that I did right by my son all these years.

Brain Injury, relationships

Fathers and sons

Small actions, big rewards.

For those of you who have children, you no doubt wonder, as I did, how they are faring living with a parent with an ABI. Ours is a unique situation as our now teenage son doesn’t know his dad any other way than with the ABI. It’s a mixed blessing, I’m sure. He didn’t know how dad struggled with him as a child, knowing that his child’s brain and body was often quicker than his own would allow. Our son is thoughtful, conscientious, and aware of everything. Always has been. And that’s a tough match for the parent who isn’t so quick and sure anymore, who forgets things easily and feels constantly tired and fogged in. Sometimes the child becomes the parent. “We parked over here, Dad. Do you have your wallet and keys, Dad? Did you remember to call Nana, Dad?”

Our son is intuitively protective of his Dad. When we were once walking along a river bank with a slight incline, our then 13 year old son strategically placed himself between Dad and the river, just in case Dad lost his balance and stumbled. We watched him do it not once, but three times. Heartwarming and Bittersweet. I’ve often wondered if our son knows how his family life is different from his friends. Does he wish his Dad were more active like his friends dads, with jobs and responsibilities outside the home?

As a father, my husband has excelled at providing the intellectual stimulation our son needs. Over the years, they’ve spent a lot of time at home together while I worked. No, the housework list I left didn’t get done. Instead, they watched a lot of documentaries on space, architecture, and engineering together. Discovery channel and PBS were the constant hum in our home. This was never mindless watching, but always followed with discussions, and practical applications . My husband was an armchair coach for building the latest Hot Wheels track, K-Nex roller coaster, or Lego Technic machine. Just because he wasn’t able to get down on the floor with him didn’t mean he wasn’t involved! Did I mention my husband, not me, was the one who wrote the lunch box notes for our son? Our son has still kept them all tucked away in a box for safety. I wonder if he’s read them lately.

And yet with all these things my husband did to be the best father he could for our son, so many times he doubted if it was enough, because it wasn’t the father he had imagined he would be. Oh, the losses he felt. Afraid to go out for a walk with his young son because the sidewalk is sometimes uneven and he could easily stumble and hurt both of them. What then? Or what if he got out too far and was too tired to get them both back home safely? What if his fatigue made him miss something important? And worst of all, what if someone tells him he’s a bad parent because he loses his temper too much when he can’t cope anymore? This fear was realized and he’s never forgotten it’s pain from those words spoken by those who didn’t understand. He’s had 15 years of wondering if, despite his ABI, he’s been the father our son needed. It’s a challenge just to rise to being a good father, but what about being a good father within the limits of your ABI? Is it enough?

My husband finally got his answer to that question last week. When our son sought out Dad to instruct him on his first shave, I had to leave the room to shield them from my tears of joy at this moment of their bonding. His son reached out to him. His son trusted him. His son wanted him in his life. They went about their business of shaving, quietly talking to each other in the way their sensitive souls do. But inside each of them, molecules moved to make room for this new relationship.

At last he knew. His son, his only child, accepted him. As he was, not as the dad he thought he should be. He was enough in his son’s eyes. More than enough.