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