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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Why I spend (most of) my weekends at home after brain injury

BY: ALYSON ROGERS

A brain injury can come with a variety of symptoms, from visual disturbances to changes in personality.

I have a diffuse axonal injury – a fancy term for damage to tissue in multiple regions of the brain – and the most significant symptom that comes with such a fancy term is fatigue.

When fatigue is present at all hours of the day, down time is precious. I work full-time, and anything beyond that requires a lot of thought, caffeine and an understanding that I need to be in bed by 9 p.m.

Unlike other symptoms of brain injury, fatigue is predictable: if I’m not at work, I’m probably at home. I may leave the house for a few hours on a weekend, or not at all.

My friends often ask what I do when I stay home, how can I stay occupied for all of those hours?

picture of Alyson's home: a picture on the wall of a door with a pillow on a white table that reads 'live, laugh, love' a coffee pot, mug and flowers on a wooden table. Coffee cup reads 'go away I'm reading'
PHOTO: ALYSON ROGERS

My days at home start with the relaxation essentials: my diffuser and candles. Trust me, whether you want to feel relaxed, energized, renewed, happy or sleepy, there is an essential oil and candle for that. I take an opportunity to stay at home as one to take care of my body and feel good. This means alternating between sipping tea and water while I light up the diffuser and candles.

The reason I stay home is two-fold; I’m staying home because I’m exhausted and I’m staying home because I need to rest up for the week ahead. The more brain injury symptoms I’m having, the more likely I am to be on my couch.

Essential oils
PHOTO VIA PEXELS

While I spend some time watching movies and television, I can’t sit for hours doing this. My favourite activity when Netflix is off is reading. I usually have a lot of books on the go depending on my mood, including crime books, academic reads and something light, like Mindy Khaling. My other favourite activity is Sudoku, the extreme sport of the brain-injured. (On a side note: if you have any unused Sudoku’s from your newspaper, let me know!)

This down time has also given me more time to write. Beyond the BIST Blog, I also write for The Mighty and have contributed a personal essay to a feminist comedy book coming out in the summer.

Since I moved into a one-bedroom apartment and got an adult job, I have become obsessed with decorating (and redecorating) my apartment. I have decided that if I’m going to be spending so much time at home due to my disability, I’m going to make my home beautiful. I’m a big fan of fake plants as they are self-sustaining and do not care that I am a bad plant mom.

This may sound boring to the able-bodied as there are plenty more interesting things that one could be doing with their weekend. As a person with a disability, this works for me and ensures I’m able to show up for who and where I’m most needed.


Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

 

 

 

 

I live with brain injury: walk a mile in my shoes and you will understand

BY: LEAH DANIELLE KARMONA

Living life with a brain injury is difficult. People who do should be commended for trying their best and never ridiculed for their situation.

Everything takes more time to do. Depending on which part of the brain is injured, your hands may not work right, you may have learning challenges, your speech may be hard to understand, mobility may be an issue, you may have personality changes, your reaction time may be slower.

Living with brain injury

Everybody says, ‘Just stay positive about it.’ But they don’t live with a brain injury. People say the most inappropriate things like, “Oh you have got to be less sensitive about this.” They aren’t in my shoes. They have no right to say this. A brain injury can cause massive problems. People don’t realize this until they actually have lived the experience of someone with a brain injury. Then they realize, “Holy Hell!” What did I sign myself up for here? I know nothing about living with a brain injury.”

And then a whole new life begins. People who live with a brain injury are heroes and should be commended for doing their best. Walk a mile in their shoes and you will understand.

 

 

What I learned from having a stroke at the age of 40

BY: JANET CRAIG

Although I usually post recipes I thought June being Brain Injury Awareness Month, I would talk about how I got here.

Back in 1991, when I was just 40-years-old (yes, you can do the math), I suffered a massive brain aneurysm. I am now turning 67 and even now when I speak to stroke survivors, I still get emotional. I was a healthy ski instructor, never smoked, did not take birth control nor had high blood pressure. I was bodybuilding with heavy weights and teaching skiing at least twice a week. So the bonus was, I was in great shape.

Having at stroke at 40

What I did not realize was that my mother had the same type of stroke at 37-years-old. Being Irish, she kept talking about the time she had the ‘spell’. My sister also had a TIA, a mini stroke, at 42 so definitely we were predisposed. This is another contributory factor, the hereditary card.

For the two months prior to my stroke I worked in a new job that I was struggling with that included a lot of travelling, driving and working all kinds of hours. I was single and dating so probably exceeding the number of drinks I should be having. I had a constant migraine, which sometimes I would think that I was just tired and I would ‘catch up’ on the weekend. I never consulted with a physician and later on, when I returned to work, realized I was self medicating.

Easter weekend I was teaching skiing at Mont Tremblant and had a migraine so severe I was vomiting throughout the night. In the morning I felt so tired and still nauseous. I tell people later the sensation of trying to move and I felt like I was literally was underwater.

Everything was an effort and my limbs wouldn’t respond. I finally made it to the chairlift but when I sat back, my head felt like it exploded. Fortunately for me the staff there are trained EMS services so got me into an ambulance where I was rushed into Montreal Neurological Institute, a leading research facility where I was diagnosed with having a  stroke and treated quickly. That is the only reason I survived.

In hindsight, all the signs were there but like most people, particularly women, I chose to ignore them.

In hindsight all the signs were there, but like most people, particularly women, I chose to ignore them - Janet Craig

I thought I was overtired, stressed from work and lack of sleep. Well of course I was. Not realizing that expression, stress kills, is actually true! What I did learn, the hard way, is to know your own body and be kind to yourself.

Be aware of the risk factors: oral contraceptives, smoking, obesity, high blood pressure, family history, high alcohol use and stress. Most women have very high expectations of ourselves and even though they are exhausted think that they will “catch up” on the weekend. Well you know the drill, you have to be the driver, the cook, the therapist, model wife, and housekeeper and lo and behold the weekend flew by and you are still tired!

Now women have more strokes than men and heart disease in general is hard to diagnose in women we have totally different systems than men. The prognosis is much better for recovery with new drugs available, more research and 10 centres for Stroke Prevention in Ontario.


After suffering a stroke at the age of 40, Janet left the corporate world to open a personal chef business, Satisfied Soul Inc. Now retired, she continues to enjoy her passions of cooking, creating and teaching people how to eat properly. 

The challenges of understanding brain injury as a result of Intimate Partner Violence (IPV)

BY: ALANA TIBBLES

Sports injuries are often the first thing that comes to mind when people think about brain injury. A close second, motor vehicle collisions.

As a brain injury researcher, I am ashamed to say I hadn’t considered another population of people which are at high risk of a brain injury: those who have experienced intimate partner violence (IPV).

It wasn’t until the Brain Injury Canada conference in September 2016 that I started to hear about research relating to women who had experienced brain injuries as a result of IPV.

Close up of hands clasping
PHOTO: PIXABAY

I’d like to take a moment here to note that persons of any gender may be either perpetrators of or victims of IPV. The majority of the studies I will be summarizing are regarding female survivors of IPV perpetrated by males. As more research becomes available we may gain further insight into other relationship dynamics. 

 Survivors of IPV

Anyone who has experienced injuries to the head and/or neck (including being shaken), should be assessed for a brain injury.

This includes people who have experienced strangulation, since brain injury can occur from lack of oxygen to the brain. People who are living with brain injury are at an increased risk of depression or anxiety and tend to experience frequent headaches, fatigue and dizziness. Many experience cognitive issues such as impaired memory and concentration as well as difficulty planning and making decisions.

Understanding these symptoms are the effects of the brain injury, and getting help dealing with them, may help a survivor make decisions regarding their living situation and plan to gain independence from a violent partner. It may also validate their experiences, knowing there are real health issues going on, and they are not ‘just making things up.’

Hospital Hallway
PHOTO: ERKAN UTU VIA PEXELS

The good news is that research is starting to focus specifically on how females recover from brain injuries and how brain injuries from IPV and other forms of assault may be different from those sustained in other ways (such as a car accident).

As such, survivors of IPV who have sustained a brain injury (and feel they are able to so) may wish to participate in research in order to help further our findings with the goal of increasing the information base for other survivors.

Social Support is Crucial

Social isolation and loss of relationships are too common after brain injury, and those who have strong social support networks in place post ABI are more likely to have better outcomes than those who do not.

A reliable support system may be even more important for women with a brain injury as the result of intimate partner violence. Not only will they be dealing with the effects of a brain injury, but they may be leaving a violent partner, and / or dealing with the emotional and psychological impacts of having survived intimate partner violence.

Women may require financial support, legal information and a safe place to stay (with their children, if applicable) and temporary or ongoing caregiving.

While it is important to screen for brain injuries from IPV, it is complicated by issues regarding how safe a patient feels disclosing IPV. Some patients may fear retaliation if their partner finds out they’ve talked about the abuse and some may fear for the safety and custody of their children.

picture of person's shoes in the fall leaves
PHOTO: PIXABAY.COM

Survivors of brain injury from assault (including IPV) are much more likely to suffer from post-traumatic stress disorder (PTSD) and often have lasting psychological trauma.   There is now an ongoing research project with the aim of introducing a toolkit for frontline workers serving women with IPV, to improve the experiences of both the women and the workers when discussing and addressing this sensitive topic.

Research Challenges

Research findings from other studies often help direct future research.  I would caution that while past studies can be helpful, the literature may be missing more than we realize when it comes to survivors of IPV, for the following reasons.

Participation

Some survivors may choose not to participate in research or discuss their experiences. Depending on how risky they feel disclosing the IPV may be, survivors may not be seeking out medical assistance after injuries or they may not be forthcoming with details about how it happened.

Loss of follow-ups

If survivors seek medical attention, they may not return for follow-ups depending on whether or not they are trying to avoid alerting their partner about their medical visits.

Lack of details about injury

Unlike traumatic brain injuries from sports injuries or vehicular accidents where there are witnesses or first responders to provide information about the incident, survivors of IPV may have to rely solely on their own memories of the event (which can be difficult for anyone with a brain injury). They may not know how long they were unconscious or how many blows to the head they have sustained. Having accurate details about an injury can be helpful for research, especially when it comes to understanding post-injury recovery patterns and outcomes. While definitely not the fault of the survivor, having missing data may make it difficult to reach conclusions about the recovery of this population.

Incomplete representation of population

A study by the World Health Organization (WHO) found there are different societal standards for what constitutes IPV in countries where women have fewer rights. Therefore IPV may be underreported in other cultures or countries where males are viewed as having the right to punish their wives. Ideally there should also be more representation in the research from other relationship dynamics, such as those with trans partners, same-sex relationships, relationships where the female is the perpetrator and the male is the victim and relationships where both partners are violent.

Now, this is not to discount the value of research being done in this area. It is a historically under-represented group in the brain injury literature and researchers are now making great strides to shed light on how brain injury may differ for this population. It is hopeful that with continued research, we can tailor rehabilitation and support for this group with the aim of improving their recovery and quality of life.


 Alana is a researcher who recently completed her Master of Science degree at the Rehabilitation Sciences Institute at University of Toronto.  She has been studying brain injury for several years in topics including but not limited to: substance misuse, recovery, neurofeedback, sleep, and hospital-to-school transitions.  Her aim for her blog posts is to continue to learn about and promote learning about brain injury research, hopefully making it easier for interested persons (brain injury survivors, caregivers, loved ones, clinicians etc.) to access relevant information.

15 things you don’t know about Christiane Kokko: BIST Volunteer of the Year, Caregiver Category

We are thrilled to announce the first winner of our BIST Volunteer of the Year award in the caregiver category – Christine Kokko. If you popped into the office this fall, you would have noticed some changes – mainly that the office was super, duper organized. That’s all thanks to Christiane, who took time out to help do massive de-cluttering and -reorganizing of our space.

We can’t thank her enough!

_MG_0389
Christiane Kokko

1. The reason I began volunteering for BIST:

Because I love what they do, and wanted to be part of it!

2. If I could pick any job in the world, I would be:

The first Female Governor of Bank of Canada, as such I would promote the economic and financial welfare of Canada!

3. I have an (irrational or otherwise) fear of:

Injustice.

4. My greatest assets as a volunteer are:

Multitasking, administrative skills and my love for networking 😉

5. My friends would describe me as:

A Leo – passionate, tenacious and full of love!

6. If I could invent a super power, it would be:

A cure for my husband’s condition

 7. What inspires me most about BIST is:

The team – and the quality of work that comes out of the organization.

8. If I won $1 million dollars I would:

Help people in need  – to give them the opportunity to smile and be happy.

9. My personal hero is:

MY HUSBAND!

10. My celebrity “crush” is:

Sting — AND — Colin James … shh – it is a secret!

11. My favourite BIST event is:

Tuesday’s activities – and caregiver me time.

12. A quote/motto I try to live by is:

Be yourself, be and in the moment.

13. If I could volunteer anywhere in the world I would:

Volunteer in Canada — the best place on earth!

14. One time, as a kid, I:

Would run down the hill after school to be the first on to get a candy from the crossing guard – proud moments.

15. I am most proud of:

Who I have become – thanks to my friends and family believing in me.

Stay tuned throughout April as we announce winner in Ambassador and Survivor/ Thriver categories!