A year with a different brain

A version of this article was originally published on March 18, 2017

BY: ERIN MOORE

On March 18, 2016 my husband Davin sustained a concussion.

I write this on the one year anniversary of my husband’s injury. It brings an incredible mix of emotions. It has been the hardest year of our lives; financially, mentally, physically and emotionally.

We have cried more together this year than we have in our almost 20 years of time with each other. We have been in dark places this last year, individually and side-by-side. We have battled this brain injury together, but alone.

Family walking in sunset

Concussions are invisible to most. The terms the ‘walking wounded’ or the ‘invisible injury’ have been given to concussions because the majority of people surrounding someone with a concussion aren’t aware of what that person is braving, or managing, or being held captive by. I’m not writing this post to educate you on what a concussion is, or to understand post-concussion symptoms, you can go google that.

I’m going to share with you my experience – as a wife, a partner and a best friend of someone who has been battling concussion symptoms for one year – with no win in sight, and still far away from the finish line.

It was three months into Davin’s concussion that I really started to feel the first feelings of being scared. Davin had concussions before, and I had seen at times some very bad symptoms from it. But they all cleared up relatively quickly and he became his regular self again. Last June his neurologist told us to expect at least a year for recovery, maybe longer. This news shook him, and me, and it set off a whole new dimension for us.

Up to this point, it was almost like I had watched Davin run into a brick wall over and over again, trying to make strides towards a little bit of improvement but getting stonewalled over and over again. After the neurologist’s prognosis, Davin stopped running into that brick wall and just starred at it instead. The light of perseverance, determination, optimism and strength started to dim. I could see him fall into a darker place, faced with the reality that it was going to be a long time until he got better, and no one could tell him how long it could be or what he needed to do to get himself healthy again. The frustration mounted, when all the therapies, practitioners, counsellors, specialists, supplements, food eliminations, (you name it, we tried it) failed to work.

Photo of a family standing at a beach during winter

Sure, some people may have seen some snippets of Davin’s behavioural responses to his concussion, but they didn’t get the full picture. Most people saw the same guy they always knew, only off work, and unable to do his usual athletic and social activities. That’s what makes it really hard for people to understand what happens to someone when they are living with a concussion. There is a side that is invisible and unseen by most, even close family members. It’s uncontrolled, reactive, irritable and mean.

I learned quickly that I could never take anything that my beloved dished out at me personally. Davin – the true Davin – did not want to react to situations the way he did but he lacked the filter or response to slow down, think and choose his words or behaviour before acting them out.  The remorse and shame that follows an episode is equally hard to watch, as seeing Davin in emotional pain scratches and slices my heart over and over again. As his partner, there are so many times I felt completely helpless, and at times,  still do, as though I’m stuck in the path of the concussion’s unpredictability.

The cycle of a concussion is vicious. It first brings physical and mental pain, then triggers emotional pain, which trigger symptoms, which trigger depression and so on.

Ah that word – depression.

I’m scared of that too. A common byproduct of a concussion is this whole other layer of depression and the inability to balance emotions. I again played spectator to Davin as his depression started to guide him, as his clarity on life was now being mismanaged by a giant bruise on his brain and a chemical imbalance. His brain wasn’t firing like it used to and tasks that those with uninjured brains take for granted – like going to grab some groceries – were daunting and debilitating, resulting in frustration and anger. This would then trigger intense fatigue, malaise and depressive states.

How would you cope? Eventually we learned the patterns and together started to identify the triggers. We figured out a management plan and I stood by my man and let him just be, as he needed to be in that moment. No judgement. No resentment. Just love.

By this point we were deep in the summer months in Whistler, B.C. We had decided moving to Toronto was the best choice for us. We were down to one income, with Davin’s Short Term Disability payments ending at the end of June, we had both kids in daycare and we were starting to see for the first time in our adult lives that if we continued like this we were going to be in some financial strife quickly.

Managing his medical and disability applications were also incredibly taxing on Davin, and in September I took over full management and advocacy for his medical paper trail. We were banking on Davin’s Long Term Disability claim to be accepted and which would drastically turn things around for us. But, after six months of waiting for a decision, they denied Davin’s claim. We appealed. They denied us again. We appealed again, and one year later we are still waiting.

So now what?

How do we keep going when the concussion and depression continue to hold my husband in captivity of who he once was. How do we raise our kids so they understand what has happened in the last year but remain resilient to times that have been trying for them, and us. How do we show them that we are strong and brave and that we will get through this? That concussion won’t beat us.

I can tell you what we did, and do everyday, to do our best to stay above the concussion and depression. We allow us the power to choose.

Whistler wasn’t working for us at that time, so we chose to leave and went on an adventure, that was healing.

We chose to move across the country to be closer to family for support and for filling our heart up when we needed it.

We choose to ‘move slow to move fast’, words spoken by a wise confidant that have made all the difference for us.

We choose to do only a little bit, and not all of it, and manage each moment for what it is.

I chose to not go back to a job that would take me away from my family 40+ hours a week.

We have battled this brain injury together, but alone

I chose to start a business to create a different path for our family where we can create and grow in line with the pace that Davin’s brain needs to heal.

I have days where I feel so alone, that no one truly understands what it is like.  I have days that are really hard. But despite the torture this last year has been, I have so many things I am grateful for that would not have come to be had this concussion not happened. I have learned, like to no level I’ve known before, what it means to be patient, to have compassion, to listen, to be brave, and to be present.

It’s taken me a long time to open up and allow myself to share the truth of my experience and allow myself to be vulnerable. I hope these words resonate with one of you readers.

Share my story.

Learn about concussions and talk about it, and keep talking about it. More awareness needs to be raised, more understanding about what those who suffer are going through. We need to show more compassion for those that live each day in a fog of their brain injury.  We need more support for ways to manage and cope for those with the injury and the people that are by their side.


Erin is mom to two amazing children, and wife to an incredible husband. She has a love for travel, yoga,and bringing people together on issues that matter. 

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How we celebrate Christmas after my husband’s brain injury

BY: THERESA McCOLL

My husband, Norm, has lived in a long term care home since acquiring his brain injury six years ago. Each holiday, be it Easter, St. Patrick’s Day, Halloween or Christmas, the facility decorates the common areas, in attempt to give residents and their families a more festive experience.

To be honest, since Norm’s accident, I really haven’t felt like celebrating the holidays. Norm and I don’t have kids so why bother? It seems as though I am just going through the motions.

Thankfully, Norm and I have good people around us. We get a crew together to decorate Norm’s room each year. His brother, sister-in-law and friends come to help. They help bring out the holiday spirit – which is hard, as Norm doesn’t show many emotions.

Remember to take time for yourself. Even a walk around the block to clear your head, or sitting down to breathe can work wonders. If you don't look after yourself who will?

As much as possible, we try to keep things the same as before the accident. Christmas Eve we go to our parish church for mass. On Christmas Day we go to Norm’s brother’s to open presents and see the rest of the family. In the afternoon, Norm and I head over to our friends to wish them a Merry Christmas.

Despite this, our trips are more complicated now and planning is essential. When Norm and I go anywhere, I have to book the mobility van that is at his long term care facility. If the van is booked, I have to phone the taxi company. I have to strap Norm in with seat belts for safety. When we go out for Christmas dinner, to a restaurant or to friends, I have to make sure that Norm has a pureed meal to eat.

Remember to take time for yourself. Even a walk around the block to clear your head, or sitting down to breathe can work wonders. If you don't look after yourself who will?

 

At the end of the day, I think having family and friends around is all Norms needs as when they are around, he just beams.


After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE

What we don’t like to think about, but need to prepare for

Do you ever think, what would you do if your spouse was in a serious accident?

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Theresa and Norm McColl at Theresa’s college graduation.

Who pays the bills? How are they paid? Do you have access to your spouse’s bank account?

And the big question: do you have a will and power of attorney (POA)? Do you know where they are?

If you answered ‘yes’ to these questions, I applaud you. You are prepared.

Regardless of our age, many of us think we’re too young to worry about the practical details of what would happen if we or our spouse were suddenly seriously injured or deceased. These are difficult topics to talk about, and we are like to think ‘it’ll never happen to me’. That’s what my husband, Norm, and I thought.

One day, we drove past a place that did wills and power of attorneys. Norm said, “We don’t need a will and power of attorney.”

But something in me felt differently, and I insisted we get them done.

I am so glad we did. A little while later, on Thursday, April 28, 2011 things changed for us forever when Norm was in a very serious car accident.

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This photo collage represents Norm’s passions before his injury. From top (R-L) logos from Guelph Storm Hockey, Kinsmen Club, Guelph Fire Department and Guelph Radio Station.

The pickup truck he was driving was T-Boned and ended up underneath a tracker trailer.

Norm was only able to mumble his name and where he worked before he lost consciousness. He was air lifted to Sunnybrook Hospital from where we live in Guelph. He had several broken bones, and we were soon to learn, a traumatic brain injury.

Until then, Norm lead a busy life. He worked at the firehall and had a radio show. He was, and continues to be, a Kinsmen.

Norm’s injury changed my world in countless ways, including the practical ones. Until then, he had been the bill payer and, in large part, the provider. In an instant, those duties became mine. I had no idea what to do, and I needed to find our POA.

All of our bank accounts and bills were under Norm’s name, and I needed the POA to gain access to them. Without the POA, who knows how long it would have taken before I could start to live and pay bills.

I am very grateful Norm listened to me that day when we were out for a drive. I am glad that our wills and POA were in effect. If we had just said, “Oh, that’s just for old people,” and drove by, I would have been in a heck of a mess.

After hearing my story,  what are you waiting for? Are you prepared?

Please don’t wait, tomorrow, may be too late.


After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE