life is good
challenge you at some point it's going to hand you something unfair
it's going
something from you it's going to interfere with your plans
when this happens you have a few choices than I cope or thrive
i'm here today to tell you my story or at least my story so far
I was 25 years old and neurosurgical intensive care nurse and enrolled in an
extremely competitive graduate program when i was learning how to be a nurse
anesthetist
that's people who give anesthesia in the operating room
the program accepts fewer than 25 people per year and i had worked really hard in
order to earn my spot to top it all off
this is what I did in my downtime in order to relax one day while I was
working out my right foot fell asleep and never woke back up then over the
next week
the numbness that started in my foot began to spread up both of my legs
I brushed it off hoping that it was just a sports injury
maybe I had pinched nerve all weightlifting and I knew that it was
anything more serious than that I was not prepared to face it just yet
the truth was that I saw the devastating effects of neurological disease every
day at work and I refused to see myself as anything but young and invincible
so I swept it under the rug and I kept going at the breakneck pace that I was
so accustomed to and then before I knew it the big day came I was finally given
anesthesia for the first time as a student I had spent months cooped up in
a classroom and I could not wait to put my new skills to the test
I didn't know it at the time but everything would change that day in the
locker room
at the hospital I fumbled trying to get my completely numb legs into my surgical
scrubs and as I tighten the drawstring of my pants
I realized I had no feeling from the waist down
but still i pressed on the students were expected to arrive at the hospital early
and prepare the equipment before the day officially began at 7am it was still
hours before the Sun would come up and patients would start to arrive so i had
the serene sterile operating room all to myself
but inside things were getting a lot worse for me
I lost the feeling in my right arm
the ability to move my right hand
my vision became nothing but a blur of bright fluorescent lights is then at
that point
unable to see straight use my dominant hand or feel three quarters of my body
that even I have to admit that something was very wrong I somehow made my way
back to the locker room and I call my teacher she told me to go to the
emergency room immediately
which was only a few floors below my feet but I couldn't even make it to the
elevator
stay there she told me i'm only a couple minutes away
I'm coming to get you so I SAT and waited and as I did I look down at my
very first pair of surgical scrubs which to me
represented the first step towards a career i have worked so hard for and I
try to convince myself that this is just me
caving under the pressure of a really important day but in my heart I knew I
knew that was something much much more ominous than that
I walked into the hospital that morning as a provider but he didn't walk back
out for over a week
when I did I left as a patient
my hospital mission was full of spinal taps and MRI skins IV infusions and
painful tests when the results came back it was official
I was one
of 2.3 million people worldwide living with multiple sclerosis
there's no cure for MS
in fact we don't even really know what causes it
there are treatments for some types of ms but they don't reverse the damage
that's already been done
they're not guaranteed to work and they come along with some serious sometimes
even deadly side effects
it's most common neurological disease and young people most often striking in
one's twenties or thirties when most of us are in the prime of our lives like a
lot of 25 year olds i was busy finishing school and starting my career planning
my wedding
ms was not part of my five-year plan it's an autoimmune disease of the brain
and the spinal cord
normally our immune system functions to keep us alive but in the human body the
line between healthy and sick is often perilously thin the same life-sustaining
immune system can turn against us and the results are disastrous for reasons
not well understood in people who have MS the immune system begins to attack
our nerves nerves
link the brain and the spinal cord to the rest of the body allowing them to
communicate back and forth the electrical and chemical signals much
like this wire that needs insulation in order to conduct electricity a nerve
needs insulation in order to conduct its signals in the human body this
installation is called myelin now picture this wire as the cable that goes
to your television
if we were to be damaged or cut your nice HD picture would go away
well ms is sort of the same situation immune cells target and destroy the
Milan insulation around nerves
leaving the inner wiring of the nerve exposed some signals make it through but
overall the nerve is afraid and unreliable over time
scar tissue forms around these damaged nerves creating permanent lesions that
we can actually see on MRI scans
now a damaged TV cable might give you a static but because nerves control every
movement and process all sensory information in the body
a damaged nerve can cause a huge variety of problems
symptoms can range from mild such as numbness and tingling to disastrous
paralysis loss of vision
there's no way to know where in the brain or the spinal cord ms is going to
attack and no two people with ms are like making a sort of the whack-a-mole
of diseases
elysian could pop up in the speech center of your brain cause you talk
funny one could jump up in your in your spinal cord cause paralysis and numbness
in your legs
in addition to the variety of symptoms there are also a few different types of
a mess in the type that I have relapsing-remitting their periods of
some attacks or new lesions form a new symptoms occur
follow the periods of relative dormancy or remission hence relapsing-remitting
this is the most common form of ms and the only type that somewhat treatable
and other forms progressive forms disease and disability accumulate in a
linear fashion and at this time there are no treatments
no medications on the market that effectively slow it down
furthermore patients like me who have relapsing-remitting ms can transition to
progressive MS at any time at which point our treatment options are pretty
limited
now I know what you're thinking
all things considered you look pretty good and they do
yeah
but that's only because of the hundreds of injections that give it myself
the thousands of pills that I've swallowed and the monthly IV infusions
that I get which suppress my immune system
keep my symptoms somewhat controlled and hopefully work to keep my relapses to a
minimum
I'm not having a relapse right now but the MS version of our mission is
different than you might think
relaxes can leave us permanently worse for the wear
recovery from relaxes not guaranteed and there's no way to know with certainty
whether loss of function is permanent or not even in remission
we struggle with this disease and the after effects of relapses every single
day
i also look so good because a lot of the symptoms of us are invisible
I don't look sick but i have over a dozen lesions in my spine and my brain
I don't look sick but my legs gone up whenever I walk a short distance or face
the stage a TEDx conference
I don't look sick but I take anti-seizure medication to deal with the
overwhelming nerve pain left over from a prior relapse
I don't look sick but I have a cane in my closet that I pull out on days that I
can't walk up my own
I'm getting married in may and i have to have a contingency plan for if I can't
walk myself down the aisle
a week after this photo of me hiking was taken my right leg became virtually
paralyzed and I need a cane and a wheelchair just to get around and that's
really the most frustrating part about this disease
I never know what's around the corner I don't know if tomorrow is going to be a
good day or a bad one
I don't know when the next relapse is coming or what it's going to do to me
I could be hiking up mountains one day but unable to walk across the room
the next
the second time that i was admitted to the hospital for a relapse young nursing
student was assigned to me
she confessed that she didn't really love neurology
she wasn't particularly good at it which I accepted as a personal challenge
because neurology is my passion
I taught her how to do a thorough assessment using my own broken bodies
exhibit a I note the absence of deep tendon reflexes i exclaimed she
unsuccessfully tapped on my knees with a reflex hammer
that's because of my spinal lesions I taught her how to memorize cranial
nerves and when she came back the next day she had that look in her eye was the
look of the student who finally understood a concept that they never
thought they would and I felt really great to have played a part in that and
that nursing student planted a seed in me that would begin to sprout very soon
but later after i left the hospital i was reading one of the notes my doctor
had written about me
it said advice patient to pursue new career options
prognosis is poor and that's when I realized something
because i was diagnosed so young
chances are good that I would live with this disease
for more years than I ever even knew what it was like to live without it was
up to me and me alone to set the tone for those years I didn't would be a
victim for the rest of my life I saw no good reason to give up on my ambitions
so I took charge I decided not to take a leave of absence from school and I read
every neurology textbook that I could get my hands on making myself a virtual
expert in the pathophysiology of a mess
then I decided to put my knowledge to use in the best way graduate student
knows how by taking an exam and that's how I became a board-certified ms nurse
just six months after being diagnosed with ms myself
initially took that test
as an act of defiance to prove to myself that I could get more out of this
disease that it could ever take for me
I was so really focused on my anesthesia career and I didn't know if I would ever
put it to use but it was really gratifying to hang that certificate on
the wall and add a few more letters after my name but not long after that my
neurologist called me she needed a temporary staff nurse and wanted to know
if I'd be interested
I took the job and they loved it I found that I could use my personal experience
combined it with my professional expertise and use that to have a
positive impact on the lives of others but now I a tough decision to make
stay in the anesthesia program that I had worked so hard for in the first
place
cope with my ms try not to let it change me too much or do the scary thing
blaze a new career path for myself and see where it takes me
I started to change my focus to becoming a nurse practitioner and i hope to
continue working with people who have a mess for as long as possible
being an MS nurses taught me so many valuable things when the first things I
learned is that everybody has the same questions i had when i was first
diagnosed
what's next I'm going to die from this am I going to end up in a wheelchair can
i still have children
it's a lot to take in so I decided to start a website and I used those
questions as my launching point
the unfortunate reality of our current healthcare system is that not every
provider has the time that it takes to teach every patient everything there is
to know one on one and a lot of people don't even have access to the specialist
who can give them that information in the first place
I wanted my site to be a resource for those people
I wanted them to walk away having learned something new and being more
capable of being an active participant in their own care and I something that
people from around the world writing to me saying that they were actually move
to tears because they had lived with this disease for decades but this was
the first time that they understood what was going on with their own bodies
can you imagine what that would be like living with a chronic incurable disease
that slowly took away pieces of your mind and your body and you didn't even
understand what was going on
I'm not offering a cure but I'm empowering people and that can go
surprisingly long way
after starting my own site I also began writing for several other pub
publications and websites working hard to spread awareness in every way that I
can
my mission is to educate empower and help work towards a day when a young
invincible 25 year old can hear the words you have a mess but don't be
afraid there's a cure in order to achieve this
I've taken an active role in research in every way that i can from participating
in clinical studies to further our understanding of this disease to meeting
with US representatives on Capitol Hill to discuss legislation and funding for
groundbreaking research efforts to even playing a small part in a pioneering new
research initiative that's the first of its kind for ms this initiative is
putting the power into the hands of the people who live with this disease every
day they can donate their health data
bio samples and they even get to decide what research initiatives take priority
clinical research is underfunded and time-consuming and expensive
we're hoping that bike by crowdsourcing a huge data bag that researchers can tap
into we could maybe . out trends that we didn't know existed
cut the amount of time and money that it takes to run a study
who knows maybe even get us towards the Cure faster
my diagnosis was not the end of my youth my ambition or my drive
in fact it was pretty much the opposite
ms has made me a better nurse a better person and it's given me a more
purposeful life
this has become something bigger than just me and my challenges
this is just the beginning of my story
life is going to challenge you at some point it's going to hand you something
unfair
it's going to take something from you and it's going to interfere with your
plans
when this happens when you let yourself thrive in the face of adversity but you
also find purpose in it
maybe even use it to make the world a better place
the choice is yours deny cope or thrive
yeah
ok