17 - Community: Part 2 - Gathering Place

Photo credit: Karl Musser, created it based on USGS and Digital Chart of the World data
(accessed online here, sharable under the CC BY-SA 2.5) 

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The Forks is a historically important landmark in Winnipeg, Manitoba, where I grew up.  It is where two rivers meet: the Assiniboine River, which runs West to East, originating in eastern Saskatchewan and ending at the Forks, and the Red River, which runs South to North, traveling all the way from the Minnesota and North Dakota border, then emptying north of the city into Lake Winnipeg.

At the Forks in Winnipeg, the Assiniboine and Red rivers form a junction - a fork in the waters.  Because these rivers span such vast land, over history the rivers were an important transit way for shipping and trading goods.  You can even find a replica of one of the European fur-trading ships in the Manitoba Museum - an exhibit so popular not only because the museum was actually built AROUND this ship, but also because all kids who grew up in Winnipeg ignore it’s actual history and refer to it instead as a pirate ship…indeed, with foam swords and hats I have had an imaginary pirate duel on that ship, even though I was 25 years old at the time…

Because these rivers were used so much for transportation, their junction at the Forks became a gathering place for traders.  The Forks became a meeting place for people from all different communities, starting with the First Nations peoples around six thousand years ago.  Inevitably the area became popular to white colonizers, who then unjustly took over the land from the First Nations peoples and exploited what the Europeans saw as the land’s “natural resources”…ya’ know…typical Canadian history…

In later years, as part of Canada’s expansion towards the west coast, a rail yard was built at the Forks, making Winnipeg Canada’s “Gateway to the West.”  The train brought many more people in from out of town.  Winnipeg became an important city for commerce with the Forks as its hub for meeting and market.

In later years, the industry of commercial air travel was taking off (bad pun, I know…).  This made travel through Winnipeg less necessary and the once booming metropolis slowed down to small city status.

The Forks, however, still remains a gathering place today.  Although no longer a rail yard, you can still find train travellers at the nearby VIA rail station.  The Forks boasts restaurants, local food markets, local breweries, artisan and handcrafted goods as well as museums.  You can take dance lessons under the stars in the summer and skate on the world’s longest naturally frozen ice trail in the winter.  There are outdoor concerts, art installations, walking trails and a pretty badass skate park.  There is some representation of First Nations and Métis heritage, with an increased focus considering the Forks is now the site of the Canadian Museum of Human Rights.

The Forks, thousands of years after First Nations peoples called it home, recognizing its beauty and importance, is still a place to meet others, to find common ground between people of different backgrounds and to find your place in your community.  So I find it so appropriate that it was at the Forks where I met, for the first time, another person with long term Post Concussion Syndrome.

In my last post, Community: Part 1, I mentioned how I have in fact given up and gone home.  In 2011, I was starting to lay my roots in my new city of almost two years when my first concussion happened.  Four months out from the injury, I was doing so poorly I could barely even have a conversation with my then partner over dinner - speaking and focusing on what another person was saying took too much energy.  The conversation would give me a headache, my vision would blur and I sometimes even felt a bit dizzy.  I had also for the first time just been diagnosed with anxiety and depression and although I was tired all of the time, it seemed impossible to actually fall asleep.  I was completely incapacitated and felt desolate.  I needed others to take care of me, which was too much responsibility for any one person, including my then partner.  So, I honoured my needs and gave up and went home (“That’s it!  Back to Winnipeg!”… Simpson’s reference anyone?)

Going back home to let my family take care of me was the best decision I could have made at that time.  My parents were happy to have me close by, otherwise feeling helpless to assist me from so far away.  My parents were retired by that point, so there was always someone around.  This was in sharp contrast to living with my then partner, who like many others worked full-time, meaning my days were otherwise very lonely and isolating.  Yeah, there is a downside to having people around all the time while recovering from PCS - more people means more noise and stimulation, which can trigger more symptoms.  But for me, the benefits of social connection on my mental and emotional health far outweigh those consequences.

My community of Winnipeg friends that I mentioned in the previous post also reached out and connected.  For my birthday, my rock climbing group of friends sarcastically bought me a helmet as a gift…they admitted that maybe it was a dick move to do so.  They left me the receipt should I want to exchange it for something potentially less offensive.  But I kept it.  I think only that group of friends could gift me a symbol of something so traumatic at a hard time in my life, and I find it funny.

My brother helped out too.  Although he couldn’t directly relate to my experience, he seemed the most capable of really trying to listen and understand what I was going through.  He also found me my first psychologist, which for me was one of the biggest turning points in not only my recovery, but in my now lifelong journey of accepting, learning about and treating my mental health issues.

Finally, I didn’t yet have Bob, but going back home meant I got to spend time with our family dog, Bailie.  Though “therapy dog” is a title she will never qualify for (as she tends to dislike everyone outside the family and even within she has a hierarchy of who she likes best), she’s our funny little dog nonetheless.  Petting her, playing with her and having her growl at me when I got too close to her eating dinner was still a source of support.

All-in-all, going back home got me out of the isolation that was holding me down.  It put me in a position where the help I needed was offered and I was able to accept it.

It’s important to note that my recovery back home was still a long and arduous process.  When I arrived back in Winnipeg, I had such anxiety that I actually had trouble even leaving my bedroom.  Slowly with the help of everyone, including my psychologist and my medications, I branched out.  I started sitting in the living room in front of the big, bright window, watching people go by.  I started making crafts in the kitchen, even when my parents had the radio or TV on in the background.

This same year was the year the Winnipeg Jets and the NHL came back to Winnipeg!  I started listening to parts of these hockey games from my room, then from the living room, then slowly I would watch parts of the games on TV with everyone else.  I know to some people the idea of following your city’s professional sports team doesn’t seem like it would be so important.  But for me, it was meaningful - I couldn’t do anything; I couldn’t go anywhere; I had very little of my own to talk about that wasn’t painful or depressing.  So when I would talk to others, the Jets gave me a figurative common ground: I could talk about their most recent win or loss; who scored impressive goals; players I liked.  It was something everyone was talking and excited about and despite my isolation, I still got to be a part of it.  It connected me with an entire collective of people in a way that wasn’t really affected by the brain injury and continues to do so today (Go Jets Go!).

So slowly, I started to feel good enough to explore beyond the limits of my room.  I had to leave the house to go to medical appointments, which lead me to then start walking into grocery stores.  That may not sound like a big deal, but it was - grocery stores are visually very stimulating and they can be quite noisy.

Once that felt ok, I pushed further.  It was almost another year before I became comfortable rock climbing again, but back in Winnipeg I would go to the climbing gym and talk with friends and watch them climb.

And yes, Bailie helped out too. I started going for walks again with the help of my fur-sister.  We first just walked down the street.  Then down the street and around the corner.  Then around the block.  It takes a lot of patience and perseverance to start walking only to your neighbour’s house and back, then building up from there.  But that’s what I needed, so that’s what I did.  Bailie didn’t mind at all having to be patient…though, she did mind when I would dress her up for our walks in her Jets jersey…

And all of this patience worked.  About four months later I was prepping to return back to where I had started planting my own roots.  I wasn’t by any means fully recovered, but I was doing well enough that I could go out to the odd busy environment and function fairly normally in my day-to-day life.

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Hey readers, lots more great story to come.  I know this one is long, so let’s take a break.  I know for me I need to take multiple mini-breaks when using a screen.  Regardless of your brain status, we can all benefit from taking a pause from scrolling, averting our eyes and taking a little breather.  So let’s take 10 seconds to close our eyes, take a few deep breaths, relax our shoulders and the muscles of our face in some sweet silence.  Altogether now...———————————————————————————————————————————————————————————

My parents suggested that before I leave Winnipeg once more, we spend one afternoon at the Forks.  There’s this one place in the Forks market that sells cinnamon buns my family just loves and what’s a better send off then warm, chewy and sticky fresh from the oven baked goods?

The day we went, the Forks was super busy.  As there are no young kids in my family, we were unaware that it was spring break!  Families and children packed the market inside.  This truly was a test of my post-concussion capabilities.  We got our cinnamon buns, my parents their speciality coffees and me a tea (I’ve never been a coffee drinker).  My brain managed fine - I was honestly just happy to be out somewhere among people!  But slowly the anxiety started to creep in as the noise of a cacophony of kids rose.  When we were ready to leave, I was ready to return to the sanctity of a quiet house.

On our way out, my dad ran into one of his former coworkers and their spouse.  They struck up a conversation, a couple of retirees livin’ the life, who were happy to see each other.  On the other hand, I, an adult at the beginning of their career, struggling with life and immediately rising anxiety, was not so pleased… At some point, I was introduced and was asked about what I do, where I live, etc.  I don’t think I was fully engaged in the conversation at that point, so I believe it was my dad who said “she’s going back soon but came to stay with us the last few months recovering from a concussion.”  The spouse who had not really said much up until this moment lit up, turned to me and said “Oh! I had a concussion a couple of years ago - I still have troubles because of it.  It’s horrible and no one understands.  It will get better.  You’re not crazy.”

Rising anxiety and the cacophony of kids be damned, this conversation then became one of the happiest I had that entire recovery!

My dad’s coworker and spouse then went on to tell us their experience, the lasting symptoms that were still present for them, ways in which they had to adjust and just how hard it can be.  The spouse went on to describe their own mental health issues and how as a result they started a support group for people with anxiety.

For the first time, I didn’t have to try and explain, to try and make someone understand what was wrong with me.  For the first time, I felt my symptoms, my illness and my mental health issues were truly validated.  For the first time, I met someone who had gone through it, improved and who continues to manage and live well in spite of long lasting symptoms.  For the first time, I met someone who took this super shitty experience in life and turned it into something useful for others. For the first time, I truly knew I wasn’t making this all up in my head.  For the first time, I got to say and hear someone else genuinely say to me “me too.”

Those words and being able to connect experiences are so powerful.  I wish I could bottle up how it feels so that I could pull it out at times when I’m down.  It feels both like excitement and relief.  Like my body’s engaged and I’m standing a bit taller while my muscles relax and my shoulders drop, the weight of my PCS sliding off me as I float above it.  This feeling makes me feel like I can do this, like I can overcome challenges, like I can live well with this and continue to improve.

It truly is like magic when you meet someone else with PCS.  During my current recovery, I found a community I previously didn’t know existed.  In Canada, we have a Brain Injury Association and each province/region has a chapter.  This association offers information, newsletters, support groups, training workshops and programs.  Their peer support program was a lifesaver to me!  They match you with a survivor and set up weekly phone calls between you and this person.

And when I say “match,” I truly mean it.  When the peer support program coordinator called to do my intake, they said they wanted to get to know me so they could find me someone with similar interests, similar experiences, someone in my same age category.  They said they aimed to connect women with women, to which my response was “wait, wait, wait…you mean you can find me someone my age, with similar interests, who understands brain injury and who is compassionate enough to volunteer for a peer support program??  Forget someone my gender - hook a girl up!”  Indeed, this seemed like the best dating service I had ever heard of! But despite my very cis-gender heteronormative request, I did get matched with another woman, who then became my mentor.  It truly was a great match.  We had so much in common and got along right away. You can’t ever really take a break from your brain injury - it is always there, present or looming - but these phone calls once a week, when I could speak and truly be heard and be given insight that only another person who has been there could give, was the closest thing to respite.  I am ever grateful for those weekly phone calls.

I had also reached out to another person who wrote an article in one of the association’s newsletters that is local to my area.  I really identified with this person’s story and so wanted to meet up.  We have since become friends and now I have another source of respite in my own city.

Through these people, I have also discovered the world of online support groups, often based on social media.  When you can’t go out or when you feel you could use some immediate interaction, these groups can be a good place to read other people’s stories.  I also find validation in seeing that there is an overwhelming number of people who are walking in my same shoes, or wearing my same helmet…

When reading the posts online, talking with my mentor, meeting up with my friend in town or when I was conversing with the spouse of my dad’s coworker, it amazes me how quickly we become so comfortable sharing very personal thoughts, feelings and issues.  With all of these people, within minutes we happily talk about such intimate details of our lives - completely vulnerable, yet also completely safe and relieved in doing so.  Again, if I could bottle up this feeling I get from these connections, I’d be bottling up magic.

I think connection and community are hugely important, even more so when you or someone you know is struggling with illness or misfortune.  I think there are unique barriers for people with brain injury to make these connections and find their communities.  The nature of the illness is so isolating, it limits us from gathering in typical ways and restricts how much we may be able to use platforms that already exist.  But I do believe our friends, family and other survivors can help us find our way there.  Like the Assiniboine and Red rivers brought us to the Forks in Winnipeg.  All we have to do is get on board and use our imaginations to choose whether the vessel that is taking us is a fur-trading or pirate ship.

Best in brain health,

- Krystal

To close, I want to do what I can to acknowledge, as a white person from Winnipeg, that I have totally benefited from colonization.  When I started to write the opening to this post, I was happily describing what I remembered of the history at the Forks when it all of a sudden hit me - my heart sank as I truly realized for the first time how this place in Winnipeg, where I have so many great memories, is also a place where my white ancestors took power over, unfairly treated and harmed Indigenous people.

Reconciliation in Canada is so important.  Although I want to be a good ally and help advocate, I admit I haven’t actually taken much action - I’m very awkwardly stumbling my way through it and getting things wrong along the way.  I have a lot to learn, but to not try, to not own my mistakes and aim to do better, would be to exercise my privilege to its fullest.

I am new to making these acknowledgements, so stick with me as this is my first step to bringing awareness to reconciliation in Canada:

May I recognize that the land the Forks was founded on, that provided me the meeting place for such a recovery-altering encounter, is located within Treaty 1 Territory, the Traditional Lands of the Anishinabe (Objibway), Ininew (Cree), Oji-Cree, Dene, Dakota, and is the Homeland of the Métis Nation.

(please feel free to call me in should I have gotten something wrong)

Much like I have gained from sharing stories within my own communities, please feel free to share my story with yours :)

Thank you.