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]