Alissa F. Transcript
My name is Alyssa, and I identify as living with Post Concussion
Syndrome and PTSD and mental illness. I live in the A Dish with One
Spoon territory, which is the Mississaugas of the New Credit, which is
also known as Guelph in Canada.
And I’m really excited actually to share my story because there’s times
in my life when I would not have been excited to share it at all. Yeah,
I’m in a place where I can talk about it quite clearly, I think. So, I
will start by saying that I live with a lot of privilege as a
cisgendered, white woman, and a settler. And I had a very ableist view
of the world before my three concussions. And that was a real eye opener
for me. And I’m so grateful that it happened. Because as much as I
thought I was living my best life, when these things happened, I see now
that there were parts of me that really had to change.
So, I was a curator and an artist in the visual art field, in Canada, in
the media art field in Canada. And I worked across Canada, and Europe,
throughout Europe, and in the US in, let’s say, 14 different countries,
doing different kinds of projects at different various points, over
about 20 years. I got started really, really young, like when I was like
20. And I loved it. I loved working with artists, because I felt like I
could help them tell their stories and help them get the word out about
themselves and their work and exhibit their work in a meaningful way.
So, I really dedicated my, my whole career and myself to that and put
that first in every way. And I got because of my privilege to be able to
visit some fantastic places and work with amazing people. But it wasn’t
exactly the healthiest work environment, at the same time, you know, it
was a little bit toxic, and competitive. So, I always looked for ways to
externalize the stress in my body. And one of the ways I did that was
yoga. And the other was any kind of sport that I could do really like
road riding or swimming or soccer. I played soccer recreationally.
And so, when my first concussion happened, I was the director of two
galleries at Humber College in Toronto, and was getting a new strategic
plan up and running. I had been there for just over a year, and just
finished– I haven’t even had my performance review for the year– and I
was working on building an entirely new committee to support the
gallery’s transformation into a student centered space. And I was
playing soccer because my yoga studio had closed and wanted to find
something to something to externalize the stress, like I say, like
something physical. And so I loved it. I’d played outdoor soccer for a
few summers and indoor soccer a little bit too and used to play when I
was in high school. So it was a lot of fun. And I had a maybe not
boisterous playing style, but I was somewhat aggressive in the sense
that I wouldn’t shy away from challenging play or contact or anything
like that. Now, it wasn’t dangerous in my mind, but my first concussion
occurred– it’s funny didn’t actually occur from contact with another
player at all, which is what I might have thought– but another player
actually kicked the ball up into my face from a very short distance, so
maybe a meter away, at top speed. So it was one of those things where it
just happened so quickly.
And this was a Sunday morning, indoor game, in the winter. It was
January 28, 2018. I was stunned. And people were sort of asking, “are
you okay?” You know, “do you see stars?” I went on to play, I didn’t
even stop playing. I felt fine. And went home and didn’t even think
about it. Next day, I go to work as as normal. And in the evening, I
have my Monday night League, so this is 36/37 hours later or something
like that. And the exact same thing happened. So, a player within meter
meter and a half away from me kicked the ball up into my face, at top
speed, and it struck me in the exact same spot, which was sort of, it’s
basically my third eye, if you can picture between my eyes and just a
little bit above it.
And that time, I didn’t feel great. I felt dizzy, disoriented, and
generally a little bit stunned. So I sat down, I sat out for the rest of
the game. And my biggest concern at that point was, I didn’t want to
have a lump on my forehead at work. So, so I grabbed a big snowball that
I’d made and like, held it on my forehead on the drive home, which was,
you know, a decent drive, 20-25 minutes to my place. I was fine with the
drive, fine with everything more or less other than feeling a little
silly, and wondering if I was going to have a bruise. And then the next
day went into work, which was a one, maybe one and a half hour commute
if I got caught in traffic, each way. So, I was in a meeting with the
Director of Student Affairs. And I remember looking at her and thinking,
“I don’t really understand what she’s saying to me.” Like I couldn’t
take in the information. And I found it irritating that I was having to
work so hard.
And then I went down and sat at my computer, which ended up being that
day I was working out in the gallery, which is an exposed open space,
that opens onto a huge central atrium of the college with a Starbucks
and a whole bunch of other stuff right around there. So lots of people,
lots of noise, lots of light, and I’ve felt like I couldn’t quite focus
on the computer. I ended up going home. And I think I ended up going
into, yeah, I went into a clinic, walk in clinic and the doctor on duty
was not present physically. There was a sort of resident practitioner in
in the space with me, but the doctor was on a Zoom call. And they said
that I had a mild concussion. And that I should take it easy for a
couple of weeks. I had no concept that my entire life would change at
that point.
I was really genuinely thinking mild, meant in all senses of the term.
And there’s lots that I could say about that word and how problematic it
is in terms of not defining what the outcome is, but only defining the
acute moment of injury a few days later, you know, when you’re
diagnosing a concussion, so it didn’t help– that word. It didn’t help
me at all in terms of understanding what the heck was actually going on
and what the severity could be. So I went about my life. I told my boss,
I was going to need some some time. And I felt worse and worse over the
next few days. Because my symptoms hadn’t totally began to present
themselves. Eventually they did. So I actually got a lot worse within
the first two weeks to the point where, you know, I was in extreme
physical pain, which was causing me emotional distress, which created
this horrible feedback loop that ended up causing more physical pain. I
couldn’t cry. I felt very dampened emotionally. And I was at that point,
bewildered, disturbed, and so confused about what the heck was going on,
and I felt a lot of shame.
And I tried to work half days unsuccessfully. So I took a little bit
more time off. And then two and a half months later, I wasn’t really
getting better, but maybe just a little. Unfortunately, the same spot
was was struck again.
My forehead was struck again. It was one of those fluky things where I
was sitting downstairs with my partner, and he wanted to put his arm
around me. And I knew that so I moved my head and he moved his arm and
we just timed it wrong, and his elbow struck me in the same spot.
And I cried, and I couldn’t stop crying. And it almost felt like I
couldn’t stop crying for months after that.
So as much as my emotional center had been dampened by the first two
impacts, the third one opened everything wide up in a way that was
terrifying and uncontrollable. Yeah, it almost resurfaced, it definitely
resurfaced all kinds of trauma from the past that I thought I had dealt
with, and maybe had, but it made everything very, very raw. And I got
way worse. I was at this point, getting to the stage where my, my work
was very frustrating, you know, my boss, called me at one point and was
asking, “When are you going to be able to come back? I need an answer, I
need a date.” And I had to kind of say the same thing every time, which
is, “I just don’t know.”
I remember looking out the window at a bunny that was eating grass in my
backyard, like, I felt nothing but fear and sadness and despair about
the future. And I thought this is not normal. Like, I would normally
love watching that bunny eat the grass. Something is seriously wrong.
And like chemically wrong with my brain, I dealt with mental illness in
the past and suicidal thoughts. And this was, there was no comparison,
it was like I had zero control over wanting to feel better, I just
couldn’t feel better.
Whereas in the past, I could say to myself, “Okay, I’m going to go for a
walk, or I’m going to do this, or I’m going to do that.” And I’d get a
bit of relief. And eventually, the suicidal thoughts would pass. But in
the situation with the brain injuries, it was a spiral that was really,
really dark.
And I am so lucky that I had a loving partner. Because he really
supported me at that time. And for many years after. And I suppose the
next chapter, that’s super important to hear about is that I was able to
kind of rebuild my life by thinking about brain injury is something I
may never recover from. But I could grow from the experience.
As soon as I could start reading again and being online, I would do
research and trainings and think about how could I incorporate my own
skills into a career potentially in the future in the health area that
might support other people like me. And I knew that yoga had been this
important backbeat to my work as a curator and an artist and helped me
deal with stress. And I had this suspicion that it might be a good job,
actually. So after quite a bit of intense study and certifications, and
that kind of stuff, I started my own business called Garden Variety
Movement, which offers yoga to people living with Post Concussion
Syndrome. I’m able to work with people like me, which is super
satisfying. And support them in their journey towards some kind of brain
health improvement, whether it’s super small or dramatic.
I think the biggest learning for me was that I wasn’t the same person
anymore. And that’s okay. I lost a lot of friends and colleagues along
the way. Like I used to know thousands of people and work with many,
many people all year long, like regular contact with about various
projects, and my life, my world has gotten very small to a small circle
of people that I trust. And I think that’s okay. Am I’m perfectly okay
with that.
The other major learning for me was around actual rest, not feeling
guilty about rest, knowing when to rest, how to have quality rest. My
top tip for people with Post Concussion Syndrome is the total sensory
deprivation nap. So, if you’re finding your symptoms are starting to
increase and you want to quickly manage that, for me, the best thing to
do is lie down with my weighted blanket, put a pillow over my head, put
a white noise machine on, maybe grab a pet or a loved one who’s not
busy, and say to myself, “I am resting now.” And then see if I can shut
off my brain by closing my eyes and reducing the level of input, the
level of sound, the level of light, the level of activity around me. And
that has really helped.
I’ll return to the idea of growing from brain injury, rather than
recovery from brain injury, because that was mind blowing. For me, it
was super important. And I came across this quote, in a book published
by the Kansas City Brain Injury Association– it’s a very slim little
volume called I think it’s called “Traumatic Brain Injury, Cause,
Consequence, and Challenge.” So it’s a clinical view of what it’s like
from the experience of the person who’s had the brain injury and the
experience of the people who are family, friends, loved ones,
co-workers. And it does a beautiful job of outlining some of the reasons
these these injuries happen, and how they can become a health crisis in
some cases.
And the quote goes like this, quote, unquote, “Recovery from brain
injury is growing from brain injury.” And I love that because it creates
space for self-reinvention, relearning what you think you already know,
and we get to take everything that we want to take from our previous
life, everything that we can from a previous life, before the injury,
and combine it with everything we learned from the injury, and the
effects of the injury itself. So that’s how we end up becoming a bit of
a composite person. And I think there’s something very powerful in that,
because I don’t know that I want to be the same person that I was before
my injury. I think that I was pretty high strung. And often I tried to
force things to happen. And that served me well, sometimes because I got
to go to amazing places and meet really wonderful people. But sometimes
it actually came back to haunt me. And I don’t think that I want to be
that way anymore.
You know, I want to be more grounded, and in touch with the people
around me. I think it actually helped me personally to self identify as
living with disabilities. Whether they’re permanent or not, I don’t
know. Whether they fluctuate day-to-day. Because it allowed me to kind
of become a bit more of an advocate for myself and other people. And it
allowed me to really come to face with my own– face-to-face with my own
ablest beliefs that were internalized and to contend with some of those.
Everyone has to decide for themselves, whether that’s something that
they identify with, but I will say that, for me, it was it was helpful.