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.

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.

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.

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.

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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. 

17 activities you can do when you’re recovering from a concussion

BY: ALISON

When I was in the acute phase of my concussion, I couldn’t do anything. I thought the boredom would kill me if my symptoms didn’t (new research suggests I was somewhat right).

I felt even more frustrated when my partner’s online search for fun activities for concussed people turned up countless suggestions that weren’t possible for me. All forms of stimuli were excruciatingly painful. I couldn’t do anything that involved electronic devices, lights, eye strain, sound, or physical activity.

Here is a list of activities that I gradually worked my way up to doing.

Please feel free to write a comment below and share what you did while recovering from your brain injury.

How a community garden helped me recover from my concussion

BY: ALISON

Two years ago, a concussion left me with lingering debilitation, anxiety, and depression. I went from being an active, busy person with a meaningful career, to not being able to do much of anything. Needless to say, I was not in a good place.

Then a community garden opened on my street.

Mind Yourself with Alison

Dear Reader,

Welcome to the first article in my new column, Mind Yourself with Alison. This column is about how you (or someone you care about) can thrive after a brain injury. I will focus on self-help tips, research, and personal experiences. Why? Because all the time and treatments in the world won’t be enough if you don’t recover mentally, as well.

What my personal experience with concussion has taught me

BY: KAROLINA URBAN

Summer is here and with it comes the inevitable concern for safety and injury prevention. From organized sports such as soccer and rugby, to recreational activities such as wakeboarding, tubing, biking or your friendly match of volleyball, there is always a risk of a concussion.

Concussions are not limited to a direct hit to the head. They can also be the result of a large biomechanical force, known as a acceleration-deceleration injury, which causes the brain to move within the skull.

The rate of concussions occur in 754 per 100 000 for boys and 440 per 100 000 for girls. Nearly one-third of these injuries are the result of falls, while skating and hockey account for the greatest number of sports related concussions in Canada.

photo credit: UPEI Panthers at Saint Mary’s Huskies (Nov 27 2010, Halifax NS) via photopin (license)

The difficulty with assessing or recognizing a concussion is the wide range of symptoms that vary as a result of the heterogeneity of injury. These symptoms can range from being physical in nature (i.e. headaches or dizziness), to cognitive (i.e. difficulty concentrating), to behavioral (i.e. depression, anxiety) or sleep-related (i.e. difficulty falling asleep or sleeping too much.)

80  per cent of adults recover from a concussion within two weeks. For children, the recovery process tends to be slower, but despite the longer recovery period, it has been shown that most of the pediatric population does not continue to have long-term difficulties. However, around 14 per cent of the children who sustain a concussion continue to have symptoms beyond three months after injury. As a parent, guardian, coach or friend it is critical to recognize the impact of concussions, know how to prevent them and how to promote recovery.

Throughout my hockey career I always had this willingness to do whatever it took to win. In the face of injury I would shrug off the pain and continue to compete. In my second year of hockey at the University of Toronto I sustained a concussion in the last season game. From what I recall, the puck came out of a scrum in the neutral zone and the next thing I can remember is sitting on the bench feeling ‘out of it.’ My line-mate asked whether I was okay and I simply responded, “Oh yeah, lets go.”

Rowan Stringer; Image via Facebook

Luckily there were only few minutes left in the game as I continued to play. That evening I began to feel worse, more anxious, dizzy and fatigued. But as I had always done, I continued on until the next evening, I went to class, wrote an exam (which I did horribly on) and continued onto practice. As we began to do skating drills, I began to feel nauseous and dizzy and finally agreed to get an official diagnosis. Although I took this step, I quickly got cleared to play again as game one of playoffs was eight days later.

It was quite evident I was no were near ready to return to play. I missed the puck several times, my reaction times were slower, my head was hurting and I was dizzy every time I turned. To be honest I probably hurt my team more than helped. I was, however, extremely lucky to have not sustained another hit to my head. This is called ‘second impact syndrome’ where you undergo another hit to the head when you haven’t given your brain time to recover from the first injury. Impact to the brain during this vulnerable period may result in devastating consequences, such as with the recent death of high school rugby player Rowan Stringer.

If you or someone you know has sustained a concussion, there are return-to-life and play guidelines to help. The Ontario Neurotrauma Foundation has produced pediatric concussion guidelines and has information on persistent concussion symptoms. Parachute has return-to-play guidelines which are also a valuable guide for concerned parents and athletes.

These guidelines are the most up to date and based on research. However, I would like to impart some of the things I have learned throughout my career and the few concussions I have had:

1. Remove yourself from the activity you are doing. I know this is hard but you are probably putting yourself at risk for a longer or more complicated injury. If you want to get back out there as quickly as possible and avoid more serious injuries, it is critical to stop what you are doing. 
2. Give yourself time to rest – some of the symptoms of concussion can develop up to 24-36 hours after the injury occurred. So jumping right back into a high risk activity can put you at more risk.
3. If something doesn’t feel good, stop. If you hurt a muscle and felt the pain when you began running you would stop, so don’t treat your brain any differently. I think this is particularly important when you are trying to get back to your life and sport. Monitoring how your brain feels when you are beginning to re-integrate yourself into all your activities is key.
4. Be patient – For me this was the most difficult one. Some days you begin to feel better and think that you have recovered and then the next you feel worse again. This can be extremely frustrating, especially if you want to get back to school or back to what you love doing. As long as you are aware that it’s not going to be a straight forward recovery, then maybe you can lower that frustration.
5. Rest, but don’t sleep all day. Previously it was thought that it was important to completely isolate yourself, stay in a dark room until you felt better and your symptoms were gone. However more recent research has shown that full rest can have a negative effect on brain health and recovery. After the suggested 24-hour rest period, begin to get back into what you are doing, slowly. Go for a walk or try cooking dinner, but whatever it is, make sure you’re moving in small steps.
6. Define your priorities. One common symptom for  people is fatigue and difficulty to concentrate. If you overwhelm yourself you could hinder your recovery.
7. This so-called ‘invisible injury’ is nothing to hide, nothing to be ashamed of and it is okay to not feel comfortable doing something that everyone else is. All that matters is taking care of your brain and you need to do whatever it takes to take the appropriate steps.

 Karolina Urban is a former University of Toronto and Canadian Women’s Hockey League player. Currently she is a PhD student at the Concussion Centre in Holland Bloorview Kids Rehab Hospital.