when I was 18 years old I was a
relatively normal teenager I dated and
partied and studied a little bit and I
did lots of extracurricular activities
I had a supportive family and a stable
life and I think it’s important that I
preface the story of the normality of my
teenage years because my life changed
very suddenly and extensively in my
final year of high school so in May of
2013 I woke up in the middle of the
night and my right foot was tingling as
if it had just fallen asleep I didn’t
really think anything of it and I went
back to bed the following morning the
tingling continued this time in both of
my feet and in the palms of my hands I
was starting to feel a little sick but
again I didn’t really think anything of
it and continued on with my day the
following morning I begin to feel sicker
and weaker and when I could no longer
lift my arms above my head my parents
took me to the emergency room I was a
mid to the hospital and underwent many
different tests x-rays CTS even a few
spinal taps
has anyone here ever googled their
symptoms into WebMD even though everyone
tells you to never do that and then you
think you’re like a brain tumor in like
five minutes and that you’re dying well
I had done that the night before I went
to the hospital and his disease came up
that I never heard of at a very long
scary name and a pre severe set of
symptoms and so of course I said there’s
no way I have that but wouldn’t you know
it a few days later I received my
diagnosis
guillain-barre syndrome Gian Brae
syndrome is an autoimmune disease so my
immune system was attacking parts of my
peripheral nervous system it affects
around one in 100,000 people lucky me
and to this day the cause of it is still
unknown so because I’m going to assume
that most people aren’t neuroscience or
biology nerds I’m going to explain what
it does as simply as possible so the
nerves and our bodies are surrounded by
a sheath called myelin and this sheath
allows them to transmit signals
efficiently and quickly and what my
immune system was doing was damaging and
destroying this sheet that surrounds
them and when the myelin is destroyed
the nerves are unable to transmit their
signals efficiently between them and for
this reason as the day’s progressed my
muscles slowly stopped responding to my
brain signals
I still lost the ability to move freely
and I was first put on bed rest in the
hospital they were afraid that I was
going to fall if I tried to walk again
I was son to the intermediate care unit
and there they were scared that if I
tried to eat food that I would Chokin on
it and be unable to cough it back up and
so I was put on a nasogastric to which
connected a protein big a protein shake
and a pump through a tube that entered
my nose and into my stomach I continued
getting weaker and weaker and because of
this my healthcare team was becoming
worried about my ability to breathe I
had lung capacity tats done to determine
if my to make sure that my chest muscles
were working well enough to supply me
with adequate oxygen and I was told that
if my total lung capacity dropped below
2 liters I’d have to be intubated and
put on a ventilator over the next few
days my lung capacity slowly dropped and
without the frequency of my lung
capacity tests increased first every
eight hours every six hours every four
hours finally I was managing just above
two liters and I tried my absolute
hardest to keep it there and I succeeded
at that for a full day I managed to keep
my total lung volume at just above two
liters however the following morning
during a routine exam my lung volume
unexpectedly dropped to 1.6 liters and I
was told that I would have to be
intubated later that morning this is one
of the scariest times and my experience
with the ombré syndrome very little is
known about as an illness and as such
all that was told to me about my
prognosis was that I would get sicker
and sicker up to an unknown point where
I would then plateau for about a week
and then I would slowly start to get
better the uncertainty of the intubation
tube terrified me as an 18 year old who
had been pretty perfectly healthy for my
entire life what was going to happen to
me would I be able to move would I be
able to communicate the prospect of
being both unable to move or speak in
any way terrified me this worst-case
scenario loomed over my head with a very
real and very likely possibility and
there was nothing I can do to stop it
and what do you do in a situation like
that what can you do and some moments of
uncertainty you can feel like our whole
life is coming crashing down around us
and sometimes there really is nothing
that we can do and so we do what humans
have been doing through hardship for
millennia
we endure and we wait for change and so
I remove myself in the situation
pretended that I was far away in the
future looking back on it from a safe
and comfortable place and I waited for
that moment to pass and so I waited and
the doctors came to my hospital room and
put an IV needle in my arm and put me
under anesthesia and I went to sleep
while I was sleeping I developed
pneumonia I had a fever my heart rate
and blood pressure spiked and I was sent
to the intensive care unit the ICU I was
unaware of all of this and I woke up two
days later in the middle of the night
and my worst fears were finally realised
my arms and my legs refused to move as
far as I tried my hands were locked in
permanent fists and a tube entered my
mouth blocking both my ability to
breathe on my own and my attempts at
mouthing words my time in the ICU is
some of my most hazy experiences in the
hospital I was on so many drugs at that
point antibiotics
anti-anxiety medication drugs to keep my
heart rate down to maintain my blood
pressure multiple drugs for pain I even
had some drugs to keep the other drugs
from burning holes in my stomach
and many more I remember having
hallucinations thinking that I’d changed
my room numerous times because I no
longer recognize my surroundings I was
constantly in pain and because I was
able to move
I needed help readjusting any part of my
body communication was very slow and
often involved my parents reading out
the alphabet spelling words letter by
letter if my arm was sore I need to be
readjusted or fight an itch on my
forehead and this is my existence for
full seven days
nights were by far the worst I would
often wake up in the middle of night and
be there would be no one there to help
me
my mother was often sleeping in a
coppice on my bed and I would be unable
to wake her up with my small tosses and
usually I was equally unsuccessful at
hitting my nurses call button now
because that’s pretty dark I have a
small story for you and kind of a tip
for you if you ever find yourself in a
situation such as mine and it was very
sneakily told to me by one of my nurses
one day so as I said I was on an
intimate I was on a ventilator which
works by reacting to your chest muscle
attempting to breathe and then fills
your lungs with oxygen and B when you’re
in a situation such as mine you’re
hooked up to very many machines that
monitor most of your bodily functions
your heart rate your blood pressure your
temperature etc so if you ever find
yourself in a situation where you need
someone’s attention
and you’re unable to get it in any other
way here’s the trick so if you hold your
breath for long enough these machines
are gonna think that you’re not
breathing and they’re just gonna assume
that you’re dying so they’re gonna start
like beeping like crazy this is a great
way to get a nurse to run to your room
but of course I would never recommend
abusing this power because it’s not a
good idea to piss off your nurse but it
does work in a pinch so eventually my
pneumonia went away I was able to have
my intubation tube replaced by a
tracheotomy when I started the slow
process of being weaned off the
ventilator but soon enough I was
breathing on my own I remember
distinctly the first time that I took a
breath through my nose in over two weeks
and the sensation of air moving in and
out of my nose and being able to smell
again was so amazing it really made me
appreciate how life truly was and it was
around this time that something started
to change I was still sick and I was
still sore I couldn’t move but I was
starting to get better
my hands slowly unlocked I started
talking again and moving my arms one day
the hospital for we was brought down to
my room and I played some Wii Sports not
very successfully I’m afraid to say I
did physiotherapy my first day I worked
with three physiotherapists
simultaneously and with much hard work
and effort in sport I was able to sit up
at the side of my bed this was such a
small thing but for me it was such a
huge change for my last five weeks of
existence that I was so excited I
improved and slowly I was started to be
disconnected from the machines every
time another wire or two was removed
from my body I felt like I was one step
closer to becoming myself again a real
person again I was moved to the Nova
Scotia rehab and that’s where my real
work began the Nova Scotia rehab truly
works miracles and their team of
professionals is like no other I can
confidently say that I would not be
where I am today without their support
and guidance I was kept very busy
physiotherapy twice a day occupational
therapy once a day and therapy three
times a week even some music therapy I
was able to take my my recovery into my
own hands and I could push myself and
finally I excelled the uncertainty of my
future was still there every day was new
and different and there were many
setbacks nothing was ever easier
straight forward but along with the
setbacks there were many small victories
getting in and out of my hospital bed
putting socks on by myself for the first
time harder than it sounds
attending my high school graduation I
was particularly pleased with myself
when I learned how to do a wheelie in my
wheelchair though of course my time at
the rehab was dependent on one thing and
that was being able to walk again a
prospect that was both thrilling and
terrifying to me all of a sudden my
wheelchair seemed very safe and
comfortable while my while standing up
seemed very uncertain my physiotherapist
Carla would strap me into all sorts of
different contraptions that would
support my body weight as they swung my
legs clumsily wanted from the other
trying to propel myself forward she
pushed me like no one else had and more
than once I would give her a look at
disbelief about what she had planned for
me that day and she would turn to me and
say hey would I ever ask you to do
something I didn’t think he would
succeed in and so I would grit my teeth
and I would roll my eyes which I’m
really good at
but I would throw myself into whatever
activity shad to me that day and usually
not gracefully but with lots of humor
and lots of perseverance and I practiced
and I practiced and then one day I was
walking and I got steady on my feet and
I got stronger in my body and then it
was my discharge date long term hospital
care is truly another world there’s the
real world that we can observe and
participate in but never truly join and
then there’s the hospital world nurses
and meds and schedules and shift changes
and yes the food is truly as awful as
everyone says it is
I was in the hospital for four months
one and a half months at the Halifax
infirmary on Robie Street and then
another two enough ones just on the road
at the Nova Scotia rehab when I walked
out of those doors on my discharge date
with the same doors that I’ve been
entering and exiting for the last ten
weeks no one really noticed it was
pretty anticlimactic such a huge moment
for me turned out to be very uneventful
and this transfer of power that granted
me my freedom I do have to say that for
someone who experienced a very sight a
serious life-altering illness I was
lucky in many regards I had a family who
was there for me 24/7 they’re not the
words to describe how grateful I am to
have them there I also had a health care
team that would pushed me and would
treated me be up and beyond their call
of duty the nurses were another group of
people who were there 24/7 the doctors
who kept me alive the physios and the
OTS who helped me to become me again
I am truly forever grateful for their
support what I really gained from this
experience as I’m sure you might have
guessed from now was an overwhelming
sense of gratitude these when you’ve
lived your entire life with extreme
physical privilege and then all of a
sudden you’re unable to move or talk or
speak and you’re constantly in pain it
truly opens your mind how wonderful life
really is and the small things people
often take for granted when I say that
the rehab I was on the fifth floor which
primarily dealt with spinal cord
injuries I met many patients their
patients who had fresh terrifying new
injuries and patients who had been
paralyzed for decades after their injury
and I’m one of the few people who stayed
on that floor that was able to make a
near full recovery and one of the fewer
people still who stayed on that
that was able to leave walking these
days my experience feels mostly far
removed it’s hard to connect my memories
and my knowledge of what I have known
I’d been through was something that I’ve
actually gone through I don’t have any
residual lasting effects and was
fortunate not to have any permanent
nerve damage what I did promise myself
one day was that I would not forget how
insanely lucky I am to be here every day
I get to walk and run and play piano I
can eat whatever I want without having
to worry about it
I don’t need medications to keep me
healthy and when I want to I can take a
deep breath and let it all out the
future is the funny thing we constantly
planned out to the utmost detail and yet
it never really seems to go as planned I
like most people had an idea what my
future was gonna look like it was pretty
generic finished high school enjoy my
summer go off to university in the fall
I’d never put much thought into it
that’s just what was going to happen
until it didn’t I had a path that I
wanted to travel and all of a sudden
there was this huge rock in my way and
that entire pathway just disappeared I
had to disregard every plan a notion
about what my future was gonna look like
and deal with the reality that things
were going to be different and I found
this extremely difficult to do my
friends were going off to university and
moving on with their lives and I was
still here at home doing continuing my
physiotherapy and continuing my recovery
but when I was at home feeling sorry for
myself I would thought back to those
small things that were so easy to take
for granted and forget about especially
when life isn’t easy life is hard and
tiring and stressful and we can often
get bogged down by small inconveniences
and frustrations but at the end of the
day I think that if we can all take a
look at the small and significant things
that we’ve never thought twice about
eating walking breathing and realized
that to someone out there this small
thing would be such a huge improvement
to their quality of life we might
realize how truly lucky we are every day
I realized that I have been afforded so
many privileges and the fact that I was
able to regain my physical abilities has
truly inspired me in the opportunities I
now have the future is always uncertain
but whatever experiences come my way I
know that I will be able to tackle them
with the lessons that I’ve learned along
the way and with an appreciation for the
life I have thank you
you
relatively normal teenager I dated and
partied and studied a little bit and I
did lots of extracurricular activities
I had a supportive family and a stable
life and I think it’s important that I
preface the story of the normality of my
teenage years because my life changed
very suddenly and extensively in my
final year of high school so in May of
2013 I woke up in the middle of the
night and my right foot was tingling as
if it had just fallen asleep I didn’t
really think anything of it and I went
back to bed the following morning the
tingling continued this time in both of
my feet and in the palms of my hands I
was starting to feel a little sick but
again I didn’t really think anything of
it and continued on with my day the
following morning I begin to feel sicker
and weaker and when I could no longer
lift my arms above my head my parents
took me to the emergency room I was a
mid to the hospital and underwent many
different tests x-rays CTS even a few
spinal taps
has anyone here ever googled their
symptoms into WebMD even though everyone
tells you to never do that and then you
think you’re like a brain tumor in like
five minutes and that you’re dying well
I had done that the night before I went
to the hospital and his disease came up
that I never heard of at a very long
scary name and a pre severe set of
symptoms and so of course I said there’s
no way I have that but wouldn’t you know
it a few days later I received my
diagnosis
guillain-barre syndrome Gian Brae
syndrome is an autoimmune disease so my
immune system was attacking parts of my
peripheral nervous system it affects
around one in 100,000 people lucky me
and to this day the cause of it is still
unknown so because I’m going to assume
that most people aren’t neuroscience or
biology nerds I’m going to explain what
it does as simply as possible so the
nerves and our bodies are surrounded by
a sheath called myelin and this sheath
allows them to transmit signals
efficiently and quickly and what my
immune system was doing was damaging and
destroying this sheet that surrounds
them and when the myelin is destroyed
the nerves are unable to transmit their
signals efficiently between them and for
this reason as the day’s progressed my
muscles slowly stopped responding to my
brain signals
I still lost the ability to move freely
and I was first put on bed rest in the
hospital they were afraid that I was
going to fall if I tried to walk again
I was son to the intermediate care unit
and there they were scared that if I
tried to eat food that I would Chokin on
it and be unable to cough it back up and
so I was put on a nasogastric to which
connected a protein big a protein shake
and a pump through a tube that entered
my nose and into my stomach I continued
getting weaker and weaker and because of
this my healthcare team was becoming
worried about my ability to breathe I
had lung capacity tats done to determine
if my to make sure that my chest muscles
were working well enough to supply me
with adequate oxygen and I was told that
if my total lung capacity dropped below
2 liters I’d have to be intubated and
put on a ventilator over the next few
days my lung capacity slowly dropped and
without the frequency of my lung
capacity tests increased first every
eight hours every six hours every four
hours finally I was managing just above
two liters and I tried my absolute
hardest to keep it there and I succeeded
at that for a full day I managed to keep
my total lung volume at just above two
liters however the following morning
during a routine exam my lung volume
unexpectedly dropped to 1.6 liters and I
was told that I would have to be
intubated later that morning this is one
of the scariest times and my experience
with the ombré syndrome very little is
known about as an illness and as such
all that was told to me about my
prognosis was that I would get sicker
and sicker up to an unknown point where
I would then plateau for about a week
and then I would slowly start to get
better the uncertainty of the intubation
tube terrified me as an 18 year old who
had been pretty perfectly healthy for my
entire life what was going to happen to
me would I be able to move would I be
able to communicate the prospect of
being both unable to move or speak in
any way terrified me this worst-case
scenario loomed over my head with a very
real and very likely possibility and
there was nothing I can do to stop it
and what do you do in a situation like
that what can you do and some moments of
uncertainty you can feel like our whole
life is coming crashing down around us
and sometimes there really is nothing
that we can do and so we do what humans
have been doing through hardship for
millennia
we endure and we wait for change and so
I remove myself in the situation
pretended that I was far away in the
future looking back on it from a safe
and comfortable place and I waited for
that moment to pass and so I waited and
the doctors came to my hospital room and
put an IV needle in my arm and put me
under anesthesia and I went to sleep
while I was sleeping I developed
pneumonia I had a fever my heart rate
and blood pressure spiked and I was sent
to the intensive care unit the ICU I was
unaware of all of this and I woke up two
days later in the middle of the night
and my worst fears were finally realised
my arms and my legs refused to move as
far as I tried my hands were locked in
permanent fists and a tube entered my
mouth blocking both my ability to
breathe on my own and my attempts at
mouthing words my time in the ICU is
some of my most hazy experiences in the
hospital I was on so many drugs at that
point antibiotics
anti-anxiety medication drugs to keep my
heart rate down to maintain my blood
pressure multiple drugs for pain I even
had some drugs to keep the other drugs
from burning holes in my stomach
and many more I remember having
hallucinations thinking that I’d changed
my room numerous times because I no
longer recognize my surroundings I was
constantly in pain and because I was
able to move
I needed help readjusting any part of my
body communication was very slow and
often involved my parents reading out
the alphabet spelling words letter by
letter if my arm was sore I need to be
readjusted or fight an itch on my
forehead and this is my existence for
full seven days
nights were by far the worst I would
often wake up in the middle of night and
be there would be no one there to help
me
my mother was often sleeping in a
coppice on my bed and I would be unable
to wake her up with my small tosses and
usually I was equally unsuccessful at
hitting my nurses call button now
because that’s pretty dark I have a
small story for you and kind of a tip
for you if you ever find yourself in a
situation such as mine and it was very
sneakily told to me by one of my nurses
one day so as I said I was on an
intimate I was on a ventilator which
works by reacting to your chest muscle
attempting to breathe and then fills
your lungs with oxygen and B when you’re
in a situation such as mine you’re
hooked up to very many machines that
monitor most of your bodily functions
your heart rate your blood pressure your
temperature etc so if you ever find
yourself in a situation where you need
someone’s attention
and you’re unable to get it in any other
way here’s the trick so if you hold your
breath for long enough these machines
are gonna think that you’re not
breathing and they’re just gonna assume
that you’re dying so they’re gonna start
like beeping like crazy this is a great
way to get a nurse to run to your room
but of course I would never recommend
abusing this power because it’s not a
good idea to piss off your nurse but it
does work in a pinch so eventually my
pneumonia went away I was able to have
my intubation tube replaced by a
tracheotomy when I started the slow
process of being weaned off the
ventilator but soon enough I was
breathing on my own I remember
distinctly the first time that I took a
breath through my nose in over two weeks
and the sensation of air moving in and
out of my nose and being able to smell
again was so amazing it really made me
appreciate how life truly was and it was
around this time that something started
to change I was still sick and I was
still sore I couldn’t move but I was
starting to get better
my hands slowly unlocked I started
talking again and moving my arms one day
the hospital for we was brought down to
my room and I played some Wii Sports not
very successfully I’m afraid to say I
did physiotherapy my first day I worked
with three physiotherapists
simultaneously and with much hard work
and effort in sport I was able to sit up
at the side of my bed this was such a
small thing but for me it was such a
huge change for my last five weeks of
existence that I was so excited I
improved and slowly I was started to be
disconnected from the machines every
time another wire or two was removed
from my body I felt like I was one step
closer to becoming myself again a real
person again I was moved to the Nova
Scotia rehab and that’s where my real
work began the Nova Scotia rehab truly
works miracles and their team of
professionals is like no other I can
confidently say that I would not be
where I am today without their support
and guidance I was kept very busy
physiotherapy twice a day occupational
therapy once a day and therapy three
times a week even some music therapy I
was able to take my my recovery into my
own hands and I could push myself and
finally I excelled the uncertainty of my
future was still there every day was new
and different and there were many
setbacks nothing was ever easier
straight forward but along with the
setbacks there were many small victories
getting in and out of my hospital bed
putting socks on by myself for the first
time harder than it sounds
attending my high school graduation I
was particularly pleased with myself
when I learned how to do a wheelie in my
wheelchair though of course my time at
the rehab was dependent on one thing and
that was being able to walk again a
prospect that was both thrilling and
terrifying to me all of a sudden my
wheelchair seemed very safe and
comfortable while my while standing up
seemed very uncertain my physiotherapist
Carla would strap me into all sorts of
different contraptions that would
support my body weight as they swung my
legs clumsily wanted from the other
trying to propel myself forward she
pushed me like no one else had and more
than once I would give her a look at
disbelief about what she had planned for
me that day and she would turn to me and
say hey would I ever ask you to do
something I didn’t think he would
succeed in and so I would grit my teeth
and I would roll my eyes which I’m
really good at
but I would throw myself into whatever
activity shad to me that day and usually
not gracefully but with lots of humor
and lots of perseverance and I practiced
and I practiced and then one day I was
walking and I got steady on my feet and
I got stronger in my body and then it
was my discharge date long term hospital
care is truly another world there’s the
real world that we can observe and
participate in but never truly join and
then there’s the hospital world nurses
and meds and schedules and shift changes
and yes the food is truly as awful as
everyone says it is
I was in the hospital for four months
one and a half months at the Halifax
infirmary on Robie Street and then
another two enough ones just on the road
at the Nova Scotia rehab when I walked
out of those doors on my discharge date
with the same doors that I’ve been
entering and exiting for the last ten
weeks no one really noticed it was
pretty anticlimactic such a huge moment
for me turned out to be very uneventful
and this transfer of power that granted
me my freedom I do have to say that for
someone who experienced a very sight a
serious life-altering illness I was
lucky in many regards I had a family who
was there for me 24/7 they’re not the
words to describe how grateful I am to
have them there I also had a health care
team that would pushed me and would
treated me be up and beyond their call
of duty the nurses were another group of
people who were there 24/7 the doctors
who kept me alive the physios and the
OTS who helped me to become me again
I am truly forever grateful for their
support what I really gained from this
experience as I’m sure you might have
guessed from now was an overwhelming
sense of gratitude these when you’ve
lived your entire life with extreme
physical privilege and then all of a
sudden you’re unable to move or talk or
speak and you’re constantly in pain it
truly opens your mind how wonderful life
really is and the small things people
often take for granted when I say that
the rehab I was on the fifth floor which
primarily dealt with spinal cord
injuries I met many patients their
patients who had fresh terrifying new
injuries and patients who had been
paralyzed for decades after their injury
and I’m one of the few people who stayed
on that floor that was able to make a
near full recovery and one of the fewer
people still who stayed on that
that was able to leave walking these
days my experience feels mostly far
removed it’s hard to connect my memories
and my knowledge of what I have known
I’d been through was something that I’ve
actually gone through I don’t have any
residual lasting effects and was
fortunate not to have any permanent
nerve damage what I did promise myself
one day was that I would not forget how
insanely lucky I am to be here every day
I get to walk and run and play piano I
can eat whatever I want without having
to worry about it
I don’t need medications to keep me
healthy and when I want to I can take a
deep breath and let it all out the
future is the funny thing we constantly
planned out to the utmost detail and yet
it never really seems to go as planned I
like most people had an idea what my
future was gonna look like it was pretty
generic finished high school enjoy my
summer go off to university in the fall
I’d never put much thought into it
that’s just what was going to happen
until it didn’t I had a path that I
wanted to travel and all of a sudden
there was this huge rock in my way and
that entire pathway just disappeared I
had to disregard every plan a notion
about what my future was gonna look like
and deal with the reality that things
were going to be different and I found
this extremely difficult to do my
friends were going off to university and
moving on with their lives and I was
still here at home doing continuing my
physiotherapy and continuing my recovery
but when I was at home feeling sorry for
myself I would thought back to those
small things that were so easy to take
for granted and forget about especially
when life isn’t easy life is hard and
tiring and stressful and we can often
get bogged down by small inconveniences
and frustrations but at the end of the
day I think that if we can all take a
look at the small and significant things
that we’ve never thought twice about
eating walking breathing and realized
that to someone out there this small
thing would be such a huge improvement
to their quality of life we might
realize how truly lucky we are every day
I realized that I have been afforded so
many privileges and the fact that I was
able to regain my physical abilities has
truly inspired me in the opportunities I
now have the future is always uncertain
but whatever experiences come my way I
know that I will be able to tackle them
with the lessons that I’ve learned along
the way and with an appreciation for the
life I have thank you
you
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