How I Found My Way in the Dark
[Music]
as most of you can probably tell
i’m quite tall
and for most of my life i have been
answering this question
do you play basketball
and every time i feel like i’m
disappointing them and i tell them no
i don’t play basketball
but i do redeem myself because for a
long time i was a competitive swimmer
i started swimming when i was about 9 or
10 years old and although i didn’t love
the sport at first by the age of about
15
it really grew on me
i love all the challenges that it
brought into my life
i make some great friends and
i even learned to love waking up at 4 45
in the morning
to jump in the cold pool and the dent of
winter
and do this you know day in and day out
when i reached the national level
i started training in a way that was
called that was centered on the olympics
so the four years preceding an olympic
games was called an olympic training
cycle and so part of that cycle included
going to big competitions to swim
against really amazing competitors
so in early 2017
i just turned 20 and i flew down to
indianapolis to compete in the pro swim
series a competition that brought
together some of the best swimmers in
the world
and when i was there i unfortunately got
the flu
i had a cough i had a fever
i just wasn’t feeling so great and so my
performances suffered and i thought you
know these things happen i just have to
push through give my best shot and i’ll
do better next time
after that competition i went down to
florida for a training camp
and things were not going so well for me
i was completely exhausted i wasn’t
swimming well and i didn’t really know
what to make of it but i just thought i
just need to get home sleep in my own
bed eat some home-cooked food and
everything will just
sort of
set back into place on its own
so i got home
and
that’s not what happened
actually things were getting worse i was
getting weaker and weaker i was not
making the times i should be making in
the water
i wasn’t feeling so great
and one day
i started feeling some tingling in my
toes
i thought
that’s pretty weird that’s a strange
sensation that you don’t get every day
but i i wasn’t too alarmed
a few days later that tingling had
started spreading into my feet and it
appeared in my fingers
and so i got home one day and i went to
unlock my front door
and as i did
my fingers just crumbled around the key
i didn’t have the strength in my fingers
to even hold the key in place
and that’s when i was really alarmed for
the first time i thought this is
this is strange something weird is going
on and i i wasn’t quite sure yet what it
was
so a few more days went by and the
numbness and the tingling that i started
to feel in my feet
and in my fingers had now turned into
numbness
and that numbness was creeping
up my feet up my legs up my arms
and with that numbness
came weakness
and eventually pain
on march 23 2017
less than three weeks after i’d competed
in indianapolis i walked into the er
not knowing that i wouldn’t leave the
hospital for the months to come
because by the end of that day
i would lose the ability to stand all
together
that night i was diagnosed with
guillain-barre syndrome or gbs for short
and gbs is an autoimmune disorder in
which the immune system attacks the
nerves in our body the nerves that bring
the information from our brain to our
bodies and back to our brains
and so my immune system the doctors
thought had been triggered by this
infection that i had when i was in
indianapolis that flew
in my system my immune system had been
attacking my nerves
causing these symptoms that i’ve been
feeling
gbs is a very rare disease
and when it does appear there’s actually
a range that it can appear in so some
people will just feel tingling or
weakness
and that can progress to a more severe
disease
that can lead to complete paralysis and
ventilation because the muscles that we
use to breathe are paralyzed as well
so how do we treat gbs well the goal of
the treatment is really to stop the
immune system we’re trying to stop a
faulty immune response that’s destroying
the nerves
how do we do that
one of the main ways that’s done and
that’s the treatment that i received is
called intravenous immunoglobulins or
ivig
and ivig is quite an interesting drug
actually because it’s derived from
healthy people
so what we do
is we take a healthy donor they take the
plasma which is the liquid component and
the blood
and from that plasma they extract
healthy antibodies or immunoglobulins
and then they take those immunoglobulins
and they give a high dose intravenously
to patients like me
and by doing so we can hit the reset
button on the immune system
stop the immune response that’s
destroying the nerves and allow the slow
process of the nerve regeneration to
happen so we’re stopping the immune
response allowing the nerves to start
healing again
and that means that for some patients
who are completely paralyzed one year
later they seem completely normal
they’ve healed from that from that
disease and they can live a normal
healthy life
so once i was diagnosed i was sent to
the montreal neurological hospital
or the neuro and the neuro
was kind of an ironic place to be sent
because as an immunology student i was
now facing this autoimmune disease and
on top of that i was being hospitalized
in the very building where i’d been
going to class
taking exams and studying
and there’s this bridge at the neuro
that connects the hospital building to
the
old royal victoria hospital
and that bridge overlooks university
street so i i found myself a few times
on that bridge and i would look out the
window
and i saw
sort of the hustle and bustle of
students coming and going you know to
class to the gym heading home
going to grab lunch with friends
and it really created the sense of
the outside world and the inside world
where i was now behind these walls
and there was this rift between the
outside world and and with that outside
world i associated everything that i’d
been up until then a student an athlete
gbs was particularly cruel because it
was slowly taking away my body
and i felt robbed of all the hard work
that i put into my sport
i felt robbed of the ability to swim
and of the of the opportunity to carry
out my passion
i received my ivig for a week at the
neuro
and after that week i was kept under
observation to see if the immune
response had stopped if i was
stabilizing
one morning after that first treatment i
woke up super early it must have been
around the time that my friends were
waking up to head to the pool for
practice
and i woke up in excruciating pain
and it turns out that
my condition was worsening still
i remember very distinctly that the
weight of the bed sheet on my chest
made it hard for me to breathe and
that’s how weak i had gotten i was now
almost completely bed bound
so we decided to do a second treatment
of ivig so another week
and then after that
we got some good news that the disease
had stopped and by then i was not doing
great obviously but at least i saw that
as a sign
this is my green light to start my
recovery
and so for this phase they sent me to a
rehab center
when i got to the rehab center they
brought me to my room for the first time
and there was this mirror
and
really for the first time since i’d been
diagnosed i looked at myself
and
i didn’t recognize the person that was
looking back i’d lost over 40 pounds and
more than just physically i i changed on
the inside as well
when i got to the rehab center one of
the key questions that i had was how am
i going to overcome the situation that
i’m in now
and it turns out that the answer to that
was
pretty straightforward i just thought
i’m going to apply everything that i’d
learned as a high level athlete to my
recovery i’m going to be persistent i’m
going to be consistent i’m going to put
everything that i have 100 every day
into my rehabilitation so physiotherapy
occupational therapy
and so the first week the goal was to
get from the bed to the wheelchair on my
own
after one week i was able to do that i
was like great i hope everything else
goes this this way
after two weeks
the goal was to get from the wheelchair
into crutches and when i was able to do
that then i thought okay
now that i have the crutches i need to
be able to walk independently
after a few weeks i was able to do that
although i was a little wobbly at first
and
that’s when they told me i could finally
go home
and that was a great day i felt
so relieved that
it was maybe all behind me i was finally
going to get back into the outside world
as i saw it and when i left the the
rehab center the first thing that i did
was
head straight for the pool
so this picture
i mean i love this picture i think it
just captures the joy that i felt that
day of you know the whole recovery
process having gone so well i was back
in my element
but it doesn’t capture everything that
was really going on on the inside
because although physically i was doing
really well i was still struggling on
the inside i had all this turmoil of
what had happened to me what it meant
and where i was going from now
i felt like
the strings of my experience were tied
up in a knot
that i couldn’t untangle i was in the
dark
and so the question that i’d asked
myself of how am i going to overcome
this situation had changed
now i was asking myself
how am i going to bring sense
to a senseless experience how am i going
to bring meaning
to an inherently meaningless experience
of suffering and disease because there
can be how we get a disease but there’s
never a why
and so a year and a half went by
and during that year and a half i just
went along with everything that i wanted
to do i went back to school i even went
back to swimming but internally i was
still struggling with these questions of
sense and meaning and one day i was
telling my friend about it
and i was
recounting everything i had gone through
all the feelings
all the all the thoughts i had
and she looked at me and she said
something that’s stayed with me even to
this day and she simply said
so what are you going to do about it
and for some reasons
something clicked in my head and shortly
after that conversation i contacted the
neuro the hospital where i’d been a
patient where i’d been hospitalized and
i told them i want to start a fundraiser
for your physiotherapy department
so we got together and we collaborated
we spoke to the physiotherapists and
other healthcare providers of the
hospital we identified needs and we
launched this fundraiser and so we’ve
been having it every year since
and we’ve not only supported the
physiotherapy department but also the
patient resource center where patients
can go and learn about their diseases
and their treatments
a year after launching that first
initiative
i still felt like i wasn’t really doing
justice to the unique perspective that
i’d gained having survived a rare
disease
and so i contacted the gbs cidp
foundation of canada
a fantastic organization
aiming to support
educate and advocate for patients with
rare neurological diseases like the one
i had like gbs
today i’m the quebec director of the gbs
cidp foundation of canada
and it’s truly a privilege to meet other
patients who are recently diagnosed with
diseases like gbs and to offer them
support to make sure that they’re not
going through this alone
as part of the foundation we’re also
organizing conferences to make sure that
patients and and family members and
caretakers have all the information that
they need to get through their
conditions
we’re also making sure that healthcare
providers
know about our rare diseases and are
able to identify them
quickly and accurately when they see
them in the clinic so that our patients
can get the adequate treatment in a
timely manner
if you remember
the ivig treatments that i got
were also engaged in advocacy
surrounding these treatments
so at ivig like i mentioned is derived
from plasma from healthy donors
and according to health canada
70
of the plasma used in canada today
actually comes from the us
health canada also estimates that our
demand for plasma will increase five to
ten percent every year
our reliance on plasma from the us is a
significant risk to the supply for these
life-saving plasma derived drugs
and that’s why our foundation is
advocating for a safe and reliable
supply of plasma in canada
so
i may not have an answer for why i got
gbs
but i know that using my experience to
help others
has meant that maybe it wasn’t all for
nothing
each of us at one point or another will
face adversity
or a seemingly insurmountable challenge
and while our instinct might be to turn
inwards
i encourage each of you to turn outwards
to put your experience to the service of
others and in doing so you’ll discover
new passions that will lead you out of
the dark
thank you
[Applause]