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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BIST review: Tracy Morgan on Saturday Night Live

People are wondering, ‘Can he speak? Does he have 100 per cent mental capacity?’ The truth is, I never did. I might even be a few points higher.

Tracy Morgan on Saturday Night Live stage
PHOTO: NBC

 BY: COIRE LANGHAM

The things we find humorous are inconsistent and strange. Perhaps this is no better illustrated then by Tracy Morgan’s opening joke as he took to the Saturday Night Live (SNL) stage last weekend.

In his anticipated return to the SNL show just over a year since a near fatal car crash left him with a traumatic brain injury, Morgan’s opening monologue started off by looking as though he lost his speech. (Is it less funny when we find a person acting like they have ‘half-a-brain’ because they actually have a brain injury? Where as before, it was funny to see a ‘full-brained’ person act like they have ‘half-a-brain?’ A curious riddle.)

Morgan truncated that bit shortly and moved on to gratitude – a very warm thank you to his comedy family of 30 Rock co-stars Tina Fey, Alec Baldwin, Jane Krakowski and Jack McBrayer, and nodding towards the gravity of the car crash that nearly took his life.

In his past work, a pleasure of Morgan was the randomness of his person. He would be so still  in the scene then issue forth with comic random hilarity, often times playing the simpleton who triumphs in the end.

Last Saturday, we saw Morgan doing some of his established characters that helped him reach his fame, including Brian Fellow and Astronaut Jones. In some numbers his eyes were reeling to keep up and we wonder if he seems to grasp just the coattail of the scene.

Yet in other numbers he sinks so deeply into character he all but disappears and delights us in his transformation. In the Safari Planet sketch, an un-cooperative camel took up the whole camera view, only to be taken off smoothly by Morgan in Brian Fellow character – hats off to him for cognitive flexibility!

Perhaps Morgan has gotten a peak from the front row seats of his own personal apocalypse, as so many brain injury survivors have. But the unraveling of our person, and the memory of that view is nursed and subdued with laughter. Humour is the nursemaid of terror, and it is heartening to see people who call in our laughs benefit from the same medicine.

This is not about whether Morgan has recovered or not. Many us living with brain  injury know recovery is never judged by one thing, and the success we had before may not be the same ones in store for us tomorrow. It is the effort to continue reaching for what we desire and working with what we have.

Tracy Morgan impressed and pleased me, working and striving to reach what he has reached. He stood up there with his quintessential Tracey Morgan style comedy and made me laugh. The ratings that night went through the roof. More importantly, he cracked me up.


Coire Langham had brain surgery just over a year ago. On his good days he remembers that a new world is out there to explore. On his really good days, he forgets the world entirely and plays make believe with his three-year-old daughter outside in the sun.

CHIRS / BIST member Rob Ashe gives UK brain injury organization, Headway Essex, t-shirt a tour of Toronto

BY: AMEE LE

Recently I’ve had a chance to visit England and walked through the doors of Headway Essex. Headway is a large organization which provides brain injury care and support throughout the U.K. I came in contact with Headway East London through discovering their art studio website. I discovered Headway Essex through Dr. Carolyn Lemsky, Clinical Director at CHIRS introduced me to Steve Shears, Trainer and Psychotherapist at Headway Essex. Steve kindly showed me the agency and I had a chance to visit and meet the people at Headway.

Headway Essex – 58b Head Street, Colchester, Essex
Headway Essex – 58b Head Street, Colchester, Essex

During my day visit, I had the opportunity to visit BounceAbility – Special Needs Trampoline Centre. Watching people of all physical abilities getting out of their wheelchairs and working on balance, coordination and stretching. There was also added “stealth benefits” (according to Andy Plowright, Service Manager) such as allowing another person to help you with your balance and relying on another person to support you on a moving surface can build trust and re-establish physical and emotional connections with another person. This supportive and trusting relationship is especially important for a person who have experienced physical trauma that have resulted in the head injury.

BounceAbility – Special Needs Trampoline Centre
BounceAbility – Special Needs Trampoline Centre

Visiting the day program and meeting people at Headway was heartwarming. One person showed me his ankle foot orthosis (AFO) brace that is very well made and seems to be protective of sensitive skin areas in the lower extremities. The brace was red and the owner of this brace is proud to be a Manchester United Fan; in Toronto, our AFO brace are uniformly white.

A Manchester United Ankle Foot Orthosis
A Manchester United Ankle Foot Orthosis

I had a chance to talk about my meditation and art program which hopefully generated some interest in developing meditation and art programming for people at Headway. When it was time to part, I was given several information guides, newsletter and a large Headway t-Shirt. Andy Plowright, Service Manager at Headway Essex was apologetic that the t-shirt would not fit me but generous in his giving spirit and gesture of appreciation.

When I came back to Toronto, I wanted to do something special and carry on the momentum of giving. I was speaking with my colleague Amanda Muise, Behavioural Therapist about my excitement and ideas. I thought it would be cool for CHIRS and Headway to connect and a T-shirt could be a good catalyst.  We talked about who could wear this T-shirt and she suggested Mr. Rob Ashe.

Rob ordering a burger
Rob ordering a burger

When I told Rob about my idea and showed him the picture, newsletter and T-shirt, he was very excited about the idea. He eagerly put the Tshirt safely away in his backpack. When I saw Rob two days later, he had taken pictures of himself around the city with the help of his friend, James.

Welcome to Toronto, Canada!
Welcome to Toronto, Canada!
Rob in front of Tim Hortons – a Canadian favourite for coffee lovers
Rob in front of Tim Hortons – a Canadian favourite for coffee lovers

Rob and I know each other through his participation in Mindful Art Workshop – Winter 2014. During the workshop, Rob learnt to meditate and try to do an art activity that was new to him. He made new friends whom he tries to keep in touch with. Rob was able to complete his art activity quickly and was ready to move on to the next task.

So sitting still and waiting and listening was new to him. He is very articulate and easily shares his stories, successes and difficulties but this ability to articulate could overshadow others who had a harder time sharing their voices. As the workshop progressed, Rob learnt to sit back and listen. To reflect quietly, then use his articulate voice to deeply appreciate other people’s talents and gifts. He talked more about others and less about his stories and came to appreciate this new way of being. Below is a sample of his art work. He called this piece – Anointed.

Anointed by Rob Ashe – art work from Mindful Art Workshop 2014
Anointed by Rob Ashe – art work from Mindful Art Workshop 2014
Rob Ashe infront of CHIRS
Rob in front of CHIRS – Community Head Injury Resource Services of Toronto

After taking a series of photographs, Rob and I sat down and I helped to upload the photographs from his phone. During the summer months in Toronto, there are several festivals and celebrations.

Below are the places that Rob visited with his friends from CHIRS:

Rob Ashe plays hockey at CHIRS
Rob at Hockey Night – a CHIRS program for persons of all abilities to have fun playing floor hockey in teams
Rob Ashe takes the subway in Toronto
Rob takes the subway Toronto
Rob with a street performer at Buskerfest in front of Yonge-Dundas Square
Rob with a street performer at BuskerFest in front of Yonge-Dundas Square
Rob poses with a street performer at BuskerFest
Rob with a street performer at BuskerFest
Rob in front of the HMV store on Yonge Street
Rob in front one of the HMV store on Yonge Street – one of his favourite places
Rob with Buskerfest volunteers
Rob with BuskerFest volunteers
Rob promoting epilepsy awareness at Yonge-Dundas square
Rob in front of Yonge-Dundas Square holding purple balloons to support epilepsy awareness – a cause that is close to his heart (BuskerFest is a fundraising for Epilepsy Toronto)
Rob and David Smith, mentor's coordinator at CHIRS in front of Pape subway station
Rob and David Slonim (mentors’ coordinator at CHIRS) in front of Pape Subway Station
Rob and his friend Jen sit in front of of Jen's childhood school
Rob and his friend Jen, sitting outside her childhood school, a private school for girls
Rob at Spadina Subway Station
Rob at Spadina Subway Station in Toronto. “This shows the humanistic side to us, ” Rob said. .”He was playing guitar and I waited for him to finish and I gave him some money and asked if he would like to take a picture together and he said, ‘sure’”
Rob in front the Old Mill in Toronto
Rob in front of the Old Mills. This is an important place as it is where he received his 25 years watch for working with the City of Toronto.
Rob in front of David's Tea.
Rob in front of David’s Tea.
Rob takes a picture of a UK flag for his wife who is from the UK
Rob taking a picture for his wife who is originally from the United Kingdom because she loves Union Jacks or anything to do with England

When I arrived at work on Monday morning, I found a treasure inside my mailbox. When Rob and I were sharing stories and photographs, he had tears in his eyes. Rob loves to connect with people and especially people of all abilities. He told me, “You couldn’t have asked for a more perfect person to do this task.”

Rob understands that people with a brain injury may not have the same physical abilities as they did prior to the injury. Through his travels he wanted to share with people the places and events that he has access to and hopefully through these images, all persons may have access to these places and events.

Rob's message to the author of this post
Rob’s message
Rob's message to the author of this post
Rob’s message

Hi!! My name is Rob Ashe and I am a client at CHIRS (Community Head Injury Resource Services) in Toronto. When I was asked to have pictures wearing your group shirt, I took on the task because I feel strongly that groups wherever and whoever need to make contact and then we have a better understanding of each other and That is Great!!!!

I want to thank you for this opportunity and let you know that I believe that having a brain injury should not hold us back as we have much to say, much to experience and above all, much TO GIVE

Rob with his wife of 19-years, Amanda
Rob and his wife Amanda. “We’ve been married 19 years and she helps me a lot.”

I can’t begin to tell you how much this has touched my heart. Sometimes the work that we do can feel like work and there are good days and challenging days.  Some days are full of beautiful moments and some days are problem solving days. My motivation for doing this work is to help others, whoever comes to my door. Knowing that we can touch each other’s lives and share in meaningful moments is a good reminder for me of the goodness inside each person that I’ve met. I am sure many therapists, helpers, teachers out there will share in my experience that the work that we do is relational and it takes two to form a relationship. The support and encouragement I give to the clients that have come into my life are reciprocated in so many ways that surprises me when I need it the most. It is these moments that helps me to remember what is important to me. To help others knowing that we all have an important part in each others lives.

NOTE TO HEADWAY ESSEX FROM BIST:

We’re sending you a t-shirt from our areyouaware.ca campaign – and can’t wait to see where it goes!

BIST areyouaware t-shirt and envelop to Headway


Amee Le is a Occupational Therapist (OT), meditation teacher, and art therapist practicing in the city of Toronto. She developed Mindful Art Workshop based on helping people with a brain injury through periods of high stress and anxiety.

You can find Amee on LinkedIn, Vimeo and YouTube.

This article was orginally posted on Amee’s blog:  Mindful Art Workshop

11-year-old ABI survivor starts website to spread awareness

BY: MERI PERRA

Remember this great kid?

Andrew Last month, 11-year-old Andrew shared his story of acquiring a brain injury as a result of a stroke for our #areyouaware campaign. If you read what Andrew wrote, you know that his story is beyond powerful – his stroke occurred just this past winter, and he is facing more brain surgery in the upcoming months. But none of this stopped Andrew from heading back to grade five as soon as he checked out of Holland Bloorview, finishing his school year, and then wanting to give back.

Andrew asked his parents if he could have a website for his 11th birthday. While Andrew says, he was “just joking around” his mom and dad took his request seriously, and with some parental guidance, Andrew recently launched www.iloveyourbrain.com.

“It’s for kids who have brain injuries, so they know there are other kids who have brain injuries,” Andrew said.

Andrew

Andrew wants to reach out to other pediatric stroke survivors in particular, since he says he has never met other kids who have acquired a brain injury as a result of a stroke. According to the Heart and Stroke Foundation, three to six kids per 100, 000 in the 28-days to 18-year-old age bracket will experience a stroke, which is a higher incidence rate than brain tumours.

“Not just only older people and adult can have strokes, but kids can have them too,” Andrew said.

The statement, ‘You don’t know how strong you are until it’s the only choice you have‘ is in the centre of the home page of www.iloveyourbrain.com, and strikes a chord with Andrew’s bravery during his recovery. Andrew says his mom, Nadine Vermeulen, found the quote on-line, and he also has a t-shirt with the statement on it.

“You need to be strong to survive things and fight things,” Andrew said.

Andrew and his family

Due to his recovery, Andrew’s summer activities are fairly limited right now, though the tough 11-year-old does have stuff going on. He is playing golf, and The Whitby Major Mosquito A baseball team, the Chiefs, are letting him practise with them this season. After a chance encounter with his mother, a former Colorado Rockies pitcher who lives in Andrew’s neighbourhood is going to toss the ball around with him, too.

Meanwhile, Andrew says his brain injury has – understandably – impacted his friends and family. He said before his stroke, his friends were pretty good at wearing bike helmets, but his brother was not.

“Well, he does now,” Andrew said.

To find out more about pediatric stroke and get support, contact the Canadian Pediatric Stroke Association. The Heart and Stroke Foundation has a resource guide for parents of pediatric stroke survivors. And be sure to check out Andrew’s website: www.iloveyourbrain.com

Untitled design-22
Andrew and his mom Nadine

Meri Perra is the communications and support coordinator at BIST.

This February – Love your brain + send a brain-o-gram!

This February, BIST is spreading some brain love.

We’ve created an online brain-o-gram you can send to everyone in your life – we’re talking family, friends, co-workers, neighbours, those Twitter followers you don’t really have a clue about …

we love your brain brain--o-gram

 

It’s simple: go to areyouaware.ca

brain-o-gram

Write a personalized message about living with brain injury, prevention or awareness.

brain-o-gramIf you’re on Twitter – spread the word and add the hashtag #areyouaware. If you’re on Facebook – share the brain-o-gram site!

So what are you waiting for? Go on, send a brain-o-gram to everyone in your life!

areyouaware.ca#areyouaware

#areyouaware – Brain Injury Awareness Month

areyouaware-180

June is Brain Injury Awareness Month and this year, BIST is trying something different.

Here’s the plan + what you can do to help:

  • Every day in June, check out our Facebook and Twitter for ABI stats, survivor stories, videos, quizzes, polls are more! Share, re-tweet and spread the message of ABI awareness!
  • For you Twitter-heads, we’re starting an #areyouaware hashtag beginning June 1st. Tweet your own #areyouaware messages, re-tweet our’s and let the hashtags and ABI awareness flow.
  • Hashtags (#) are for Facebook too! So spread the ABI awareness love! At the end of your comment or post, write #areyouaware, so others can search for #areyouaware messages, and see what you wrote:

areyouaware Facebook post example

 

 

 

 

 

 

 

  • We’ve launched a new site! At AreYouAware.ca, you can read some amazing survivor stories from BIST members here, and learn (more) about ABI here!
  • We’ve got buttons! On Wednesday, June 11, you’ll find us out bright and early at 8 a.m. handing out ‘areyouaware’ buttons and information stickers at Union, Bloor/Yonge, Finch and Yorkdale subway stations.
  • If you’ve got an ‘areyouaware’ button, take a selfie and post on Twitter or Facebook! Remember the #areyouaware hashtag!

areyouaware selfie tweet

 

 

 

 

 

 

 

 

 

 

 

  • Instead of a Nathan Phillips Square celebration this year, BIST is holding a karaoke party on Monday, July 28th to celebrate our 10th anniversary. There will be great food, and a live performance by Cougar Bait. Contact Kat at connections@bist.ca or 416-830-1485 for more info.

 Let’s spread the #areyouaware message this Brain Injury Awareness Month!