A Year with a Different Brain

On March 18, 2016 Davin sustained a concussion.

Today, is that one year anniversary. It brings an incredible mix of emotions. It has been the hardest year of our life – financially, mentally, physically and emotionally. We have cried more together 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.

See, 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. But, 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 had been battling for a year – with no win, not a victory and still far away from the finish line.

It was 3 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, going back to the way he used to be. But last June was when we got the news from his Neurologist 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 and he just kept getting stone-walled. Until he stopped running into that brick wall and just starred at it instead. The light of perseverance, determination, optimism and strength started to dim in Davin and I could see him falling into a darker place when he was 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(!) just weren’t working.

Sure, some people may have seen some snip-its of Davin’s behavioural responses to his concussion, but it’s not the full picture.  Most people saw the same guy they always knew, just not the outreach and community worker, not the athlete everyone knew him to be, and not his regular social self. 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 not visible and remains unseen by the majority – even close family members. It’s a side that is not controlled, it’s reactive, it’s irritable, it’s mean. It’s hard to watch.

I learned quickly that I could never take anything personally with the concussion, that was dished out by my beloved. Davin – the true Davin – did not want to react to situations they way he did but he lacked the filter or response to slow down and think and choose his words or behaviour before they were acted out. A response in our own brain that happens so quickly that sometimes we aren’t even aware of it. 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 I still do sometimes, like I’m just stuck in the path of the concussion’s unpredictability.

The cycle of a concussion is vicious. It first bring the physical and mental pains, and then that triggers the emotional pains,which trigger symptoms, which trigger the depression … and so on.

Ah that word – DEPRESSION.

I’m also scared of that too. A common byproduct of a concussion is this whole other layer of depression and the ability 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 now a chemical imbalance. His brain wasn’t firing like it used to and tasks that you and I take for granted – like going to grab some groceries – were daunting and debilitating, and created frustration and anger because it was something he couldn’t do … but used to be able to. Then that, what you and I think is a simple task, becomes a trigger, and catalyst for emotions that are difficult to manage and the management alone of those emotions creates intense fatigue, malaise, and depressive states.

How would you cope? This was my everyday until we learned the patterns and together we started identifying the triggers, figuring out a management plan and standing by my man and letting 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. 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, and 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 Davin and his medical paper trail. We were banking on Davin’s Long Term Disability claim to be accepted and that 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 we are still waiting – one year later.

So now what?

How do we keep going when we get more of the same and 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 will get through this – that this 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.

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

 

Advertisements

3 thoughts on “A Year with a Different Brain

  1. karen heaps says:

    your story is filled with so much emotion strength and wisdom -. You have proved yourself to be a remarkable and strong young woman – you have guided your family through this mystery maize with grace and the instincts of an ancient soul. – there are no guarantees in life, a wise woman once said to me, and really all we know for sure is this moment right here. Thank you for sharing your story with such heart and candor. This needs to be shared on some Concussion forum and this chapter of your blog should be read by those you are applying to for the disability. Really if there’s any way to share this with them. Maybe send a copy, if you can to Justin Trudeau or is it a provincial or federal department? be in touch with me
    continued love and strength to you and your family
    karen

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s