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