Blindsided How Losing My Eyesight Gave Me A New Vision
you are strong
brave selfless generous and kind
but most of all you are love pure love
and whatever it is you need to get from
this
you’ll get it you’ll get it and you’ll
soar and be even more of all the amazing
things you are
those were the words from a text message
that i received from my best friend
the day that i found myself sitting in a
nashville admitting room
at a hospital in 2019 she knew i needed
to hear those words because
i was weak i was very sick and i was
losing my eyesight by the minute
this wasn’t the first or even second
time i’d experienced something like this
and i don’t think it matters how many
times i experience something like this i
think the pain
and the sadness that ripple throughout
my body when i do
will always be felt the same
for the last 12 years i’ve been living
with a rare autoimmune disease called
neuromyelitis optical spectrum disorder
in short this is a disease of the
central nervous system
it can cause blindness paralysis and
even death
when i was 21 years old i woke up one
morning to find that the entire left
side
of my face hurt so badly that i thought
i had been entered into a boxing
tournament without any gloves
i was certain that when i went to the
bathroom to look in the mirror that i
was going to see
blood but i didn’t i didn’t see blood
bruising or even swelling what i did see
was something more unusual i notice that
the entire
left side of my face in my entire eye
was dilated nothing like this had ever
happened to me before and
i knew i was in excruciating pain
looking up
down left or right caused this radiating
pain
sent to the back of my eye it felt like
knives
i knew i had an emergency on my hands
and at the er
the attending physician learned of my
symptoms and she was concerned
but also rather intrigued she said
before she ran the standard test she
would like to do
something a little more unusual she
first asked that i cover my left eye
and then she held up two dry erase
markers
one with a black cap and one with a red
cap
all that she asked that i do was
identify the color of the markers as she
held them up
i thought she was joking at first but
then she asked me to cover
my right eye i was shocked at what i was
able to see
i was shocked at what i wasn’t able to
see
that red marker that looked so vividly
red in my right eye
no longer looked red in my left eye it
looked
brown and not only that everything
seemed to be blurry it seemed as if
someone
had draped a blanket of fog over my eye
when i told the doctor what it was i was
able to see she said that she thought
she had a hunch
she thought i had something called optic
neuritis
she explained that optic neuritis is
inflammation of my optic nerve
and she would need to run some
legitimate tests to determine whether
or not she was right but if she was
right it would explain
why i had so much pain in my eye and why
i could no longer see colors correctly
she was right tests and scans showed
that i did indeed have optic neuritis
scans of my brain my spine and a sample
of my spinal fluid
showed that i had abnormalities there as
well
being on the receiving end of news like
that
turned my world upside down
when you’re young you feel invincible
and for the first time in my life i i
knew what it felt
to feel fragile to feel small
a few weeks before this happened i went
to bed as someone who was healthy
and i woke up as someone who would never
be healthy again
this wasn’t the way i painted the
picture of my life this wasn’t the way
the story was supposed to go
nobody could tell me what my life was
going to look like 5
10 or even 15 years down the line
i had entered this unchartered territory
of the unknown
how do you plan for your future
when the future looks so uncertain
i had just moved out of my parents house
i just got married
and just started my new career i
couldn’t believe that this was happening
years down the line became
a roller coaster of attack after attack
it felt like i was on a roller coaster
of ups and downs
the medications that were supposed to
work they weren’t working
i felt like i i was being held hostage
inside this body
this body that had betrayed me i felt
trapped
and when i felt trapped i fought i
fought this war
inside my mind that i didn’t want anyone
to ever know about
this war this battle between my thoughts
these thoughts that became my beliefs
the beliefs that my life could never be
good again
these beliefs that medications aren’t
working so
i must have done something to cause this
and because i’m the cause i’m deserving
of this
i tried my best to hide my pain
my rage my sadness from everyone
on the inside i was crumbling but on the
outside
on the outside i would reassure everyone
that i’m fine
it’s okay i’m okay
but it wasn’t okay i was not okay
i worried every day about when the next
attack would happen
what would be taken from me next
i remember for years at night
i’d lie in bed and i’d get as still as i
could be
i’d check the vision in each of my eyes
i’d move my arms
and move my fingers i’d move my legs and
wiggle my toes
i had the same routine every morning too
it was almost as if i was doing
a body scan taking an inventory of the
things that still worked because
i never knew what i was going to wake up
without
i got the answer to that question in the
fall of 2016.
i woke up one morning and i didn’t need
to do a body scan i knew
immediately what was wrong
that same familiar unmistakable eye pain
that had plagued my left eye
for years and left me permanently blind
was now happening
in my right eye
i was 29 and a mom of three at the time
and i couldn’t believe that i had been
blindsided
how was i going to tell my children that
their mommy could no longer see to cook
drive them to school braid their hair
take care of them and do the things i
had done
just a few days prior i didn’t know how
they were going to understand
that was the hardest conversation i’ve
ever had to have
but the hardest part of that
conversation for me
was not being able to see their faces
clearly
i didn’t know if i would ever be able to
see their faces clearly again
i always thought in the back of my mind
that this was something
that could potentially happen but it was
my worst case scenario to be blind
i thought i had more time than this and
i didn’t
i’d been blindsided
throughout the months that followed my
husband and my children became my
lifelines between
everything i was once able to do and
that i could no longer do now
things that most people wouldn’t even
think of became huge
hurdles for me i had to have a place for
everything in the house because if i
didn’t i couldn’t find it
things like picking out clothes that
became a huge challenge as well because
i lost so much of my color vision i
couldn’t remember what color my shirts
were
eating was difficult too because what
may have once looked like a green salad
didn’t now it looked brown and i just
couldn’t eat something that looked like
that
life was incredibly difficult
on the really tough days and there were
a lot
i remember i would ask my husband to
describe the people and places i miss
seeing so much because
i never wanted to forget them i wanted
to etch
those memories in my mind so that it
would be impossible to forget
i’d ask him about the details of my
son’s
beautiful green eyes my daughters
sun kissed blonde hair the seriously
beautiful sunsets that happened over
nashville
and they’re really small things too like
what the dew looks like
in the morning when it rests in those
perfectly placed little droplets on
blades of grass the really small things
that’s what i wanted him to describe
that’s what i wanted to reimagine
[Music]
at a time when i felt completely
isolated and alone
those were the things that brought me
the most comfort
i missed seeing my life
that life that i thought could never be
good was what i missed the most
eight long very dull and blurry
months went by but then i began to
notice some subtle improvements in my
sight
things like colors became a little more
vivid
certainly not like they had been before
but i was noticing some improvements
then i started to notice some
improvements in my clarity as well
images were a little bit sharper and
nearly as soon as i started to see these
subtle improvements in my sight
something else
miraculous happened with within my body
i can only describe it as this
divine bolt of creativity it rushed
through my body and it felt like
lightning
i’d never experienced anything like this
before
it was this urgency to create
i told my husband that day that i needed
to go to the art store because
i needed to pick out paint canvas
brushes i was emphatic that would go
right away because i was going to paint
something
now if this sounds bizarre and a little
crazy i know it does but
for a moment if you could just imagine
what this felt like
in my body prior to losing my eyesight i
i couldn’t draw a stick figure i didn’t
know anything about
art composition or color theory i just
knew
i had to paint i
felt like i had been gifted something
amazing
from what i once considered a nightmare
i began to paint in this process of
creating
even though it was foreign it also felt
sacred it felt like
something outside of me was moving
through me
it felt like the pain of all those years
that i had spent
wondering why this was happening to me
it finally had an outlet
my pain had a purpose painting was far
more than just putting paint on a canvas
for me it represented the bigger picture
of my life
i felt bold and empowered when i held my
paintbrush
i was able to view a blank canvas for
its possibilities and then imagine
and create what i wanted in my mind and
then transfer that to a canvas
painting connected so many dots for me
between
the bigger picture of my life and my
artistry
i have always been the visionary and the
artist
of my life but it took losing my
eyesight for me to
see that i always have been
i think so many of us abandon our paint
brushes along the way when life gets
hard
i know i did but we lose the message
that life
is offering to us when we leave our
paint brushes in the hands of
circumstances or even other people
we may not be able to control everything
that life
hands to us but we are always in control
of our paint brushes
i’ve had curve balls thrown my way that
i never saw coming
i’ve lost my eyesight and been
functionally blind more times than i
care to count
i lost my ability to walk i taught
myself how to walk again
and gratefully i’m able to move today
living with an unpredictable
rare aggressive disease has challenged
everything i thought i knew about myself
and my life i’ve learned that you can
feel
fear down to your very bones and still
move forward
and live i know that i am not the cause
of this disease because
i no longer paint myself as the victim
of my story
i am the hero who holds a paintbrush
and you can be too i’ve learned that my
life
is good it was good all of those
years ago as well i just wasn’t able to
see it and it’s good today
my husband and i have been married for
13 years
we’ve adopted five beautiful remarkable
resilient children i’m an advocate for
rare disease patients just like me
who deserve to have their stories told
and voices heard
and i’m an artist i never stopped
painting and i never will
we get this one beautiful
messy glorious life
it’s going to hand us challenges that we
think are impossible
too painful to overcome
let it hurt but don’t lose the hope
that’s always available to you
hang on to your paintbrush and keep your
eyes focused on the masterpiece that
you’re creating
from one artist to another happy
painting