Restoring Visibility

[Music]

today

i want to share a story with you about

my sister and ace

and myself a story about a young woman

who for the past six years

has been dealing with two devastating

chronic illnesses

and me her brother who start to be there

every step of the way

when people ask me why i’m always there

for my sister i answer simply

because i love her and because i want to

be there for her

you see we grew up inseparable playing

sports

video games watching tv and doing

everything in between together

even when i went to college we stayed

close

we would call all the time and we’d

share highlights on the previous night’s

basketball game

then in november of 2015 something

terrible happened

an ace was hit by a car while biking

i got a phone call a few hours later

nothing was broken and once the bumps

and bruises heal

she will be fine

unfortunately that couldn’t have been

further from the truth

while the bumps and bruises did go away

her pain only got worse

none of her doctors had any idea what

was wrong

you see the thing about invisible

illnesses is just that

they’re invisible there are no physical

manifestations or external problems

that a doctor can use to make a

diagnosis

some of her doctors went as far as to

say that she was faking her illnesses

for attention

because that’s something they believe is

common amongst teenagers

but we knew that simply couldn’t be the

case

a year and a half later a physical

therapist

referred us to a neurologist who

prescribed an active mri that

activates the nerves in the affected

region

and finally we were on the right path

my sister was later diagnosed with both

thoracic outlet syndrome

and complex regional pain syndrome

which i’ll be referring to as tos and

crps

these two chronic illnesses would change

my sister’s life forever

but at the time we took a sigh of relief

at least there was a diagnosis

tos is most commonly found in athletes

that partake in sports

that require repetitive movements like

swimming

or pitching in baseball but can also

happen to those

who have suffered a traumatic injury

tos is a result of compression near the

first rib

and leads to hyperactivation of the

central nervous system

over time the nerves get exhausted

and the entire arm and shoulder of the

affected region essentially

shut down if diagnosed early enough the

effects

of tos can be mitigated

hence why time is of the essence

in addition to tos an ace was also

diagnosed with crps

the most painful chronic condition

according to the mcgill pain index

those who suffer from crps share that

it’s a constant burning sensation

in the affected region

on top of this terrifying sensation

they also deal with something called

allodynia a hypersensitivity to touch

meaning that wearing the wrong fabric a

brush of the arm

or a harsh wind could lead to an

incredibly painful flare

i didn’t understand what my sister was

going through

and i had to wrestle with that fact for

a long time

how could i understand what it’s like to

look perfectly fine on the outside

but to be dealing with so much pain and

suffering

on the inside but i knew

that these chronic illnesses were a part

of her life now

and if i wanted to be a part of her life

as well i had to learn as much as i

could about them

as i became more knowledgeable

it became clear to me that the road

ahead for an ace

was going to be excruciatingly painful

despite it all she persevered

it felt like our relationship was tense

at the time

i felt guilty that i wasn’t there for

her as her body literally deteriorated

when i would go home my mom would tell

me that my sister was happiest when i

was around

and while it was great that she felt so

comfortable around me

and was so happy it ate me up every time

i went back to college

because i knew i wasn’t there for her

one day i asked her why her tos and crps

were so severe

when i had seen that others were able to

go into remission

or mitigate the pain through physical

therapy

my sister sighed she said that tos and

crps are progressive illnesses

and because it took so long between the

accident and when she was diagnosed

the illness had time to spread and get

worse

my heart sank

and i was angry i couldn’t believe

that my sister lost the use of her right

arm simply because she wasn’t diagnosed

soon enough

we continued to have conversations and i

continued to learn more

and that guilt was slowly starting to

melt away

a few weeks later i came back tonight

and i said i need your help

i want to raise money and awareness for

tos and crps

so that nobody else has to deal with the

pain and suffering that you’ve gone

through

at first she was speechless

but of course she was in and hence in

december of 2018

the ride for warriors campaign was born

the plan was for me to bike 1700 miles

from my home in medford massachusetts to

my sister down in miami beach florida

in july of 2019.

although we didn’t have a lot of time we

caught a lucky break early on

we were able to partner with a

non-profit called rsdsa

that helps fund crps research

creates events for those dealing with

crps

and provides funding for individuals

that require emergency medical

assistance

as time went on and the ride became more

tangible

we became increasingly excited

every day my sister taught me something

new so every day i had something new to

post on our social media accounts

people became interested

and our following grew we even got a few

sponsors to help us out

there was one problem though

i had never ridden a road bike

i didn’t own one i know what they looked

like

and i definitely didn’t know how to

change a tire

thankfully a few months later a friend’s

dad let me borrow his bike

and so by the end of june i had done a

few 50 and 60 mile bike rides in

preparation

for a two-week adventure that would

require me to ride 110 miles a day

yeah close enough

in july of 2019 i rode 1700 miles in 100

degree

heat from my home in medford

massachusetts to my hometown

of bay harbor islands florida

we had a goal of raising five thousand

dollars for rsdsa

but thanks to the support of our loving

community we were able to raise over six

thousand

it was one of the hardest things i had

ever done

but it was by far the most rewarding

because of the people i met along the

way and what they shared with me

rsdsa had introduced me to those with

crps who lived along the route

rsdsa introduced me to those with crps

otherwise known as crps warriors who not

only opened their homes

but also shared their stories with me

they told me about the pain

the suffering the anguish they told me

about the doctors who didn’t believe

them

who said their pain was just fake

they told me about how they had to drive

across state lines to get the

medications they needed

because their home state had

restrictions on opioids and marijuana

they told me how their family had to

skip out on the fun things

when they went on vacation in order to

accommodate the crps warrior in their

lives

when the tears dried the most amazing

thing happened

everyone shared how thankful they were

how thankful they were to those who

drove them across state lines to get the

medications they needed

to those who constantly checked in and

to those who try to understand

and alter their behaviors in order to

accommodate the crps warrior in their

life

the last thing everyone said before i

left was thank you

thank you for doing this for us thank

you for seeing us the last thing they

said before i left

was thank you thank you for doing this

for us

thank you for seeing us the reason we

called it ride for warriors

was because we wanted to honor those who

were battling their illnesses every day

illnesses that didn’t just go away with

rest or exercise

illnesses that haunted people late into

the night

and would flare up regardless of what

you were in the middle of

by the time i left the last crps

warriors home

i learned something incredibly important

these warriors weren’t just stripped of

their health

they were stripped of their visibility

you see as time goes on it became harder

and harder to go out

see a movie travel or do any of the

other things that able-bodied people can

do without giving it a second thought

they felt invisible many warriors shared

how

they felt self-conscious that they were

being a burden to others and so instead

they just stayed home as time went on

they disappeared they were out of sight

out of mind it was then that i realized

why i felt so guilty when my sister was

first diagnosed with her illnesses

and why how over the last few months

that guilt had all but melted away

the answer was simple i began

to feel comfortable asking questions

when my sister was first diagnosed

i was so happy for her to finally have

an answer

but i was too afraid to ask her any

questions about it

because i didn’t want her to feel like i

wasn’t listening when she explained

something the first time

so instead i simply waited for her to

share more with me

i wasn’t being a good brother i wasn’t

being

a good friend and i wasn’t being a good

ally

at the onset of ride for warriors my

sister and i had many conversations

about tos and crps

as those conversations became more and

more complex i naturally had more

questions

and to my surprise my sister was more

than happy to answer those questions

because it showed that i cared

i became comfortable saying

i don’t understand your pain and i never

will

but i’ll do whatever i can to be there

for you

and to accommodate you so that our

relationship could grow

learning to say that made all the

difference

and now i’m up here on this stage to

help others become better allies

to those dealing with chronic illnesses

in their lives

one of the best tools that i’ve found is

called the spoon theory it highlights

the idea

of having limited stores of energy

represented by spoons

and if you spend too much energy one day

you’ll be paying for it in the coming

days

each day a person has 12 spoons and it’s

up to them to decide what they will

spend those 12 spoons on

and just as importantly what they will

not be doing that day

this chart does a great job of creating

a visual

of the decisions and the dilemmas

that some people with chronic illnesses

have to face on a daily basis

as you can see

the stores of energy run out quickly

many warriors that i talked to shared

that

one of the hardest things

they had to deal with on a daily basis

was

not being able to do all the things they

wanted

at least not without sacrificing

showering or eating a meal

crps warriors aren’t born with their

illnesses

meaning they go from a life where they

have infinite stores of energy

to one with a finite amount in the blink

of an eye

one crps warrior shared that in order to

cope with her new reality

as someone with crps she had to first

come to terms with the fact

that she will never be the person she

was before her illness

and that it wouldn’t be fair to herself

to use that person as a frame of

reference of what she can and cannot do

as an example my sister

went from being a varsity athlete

to not being able to hold a spoon in her

right hand

in a matter of months

understanding the spoon theory really

helped me

understand at least in principle what my

sister was going through

i knew that if she had a test coming up

i should only send her words of

affirmation and not expect an answer

because it would require her to waste

spoons on messaging me instead of

spending her time studying

i would go for walks i would always walk

on her right side

in order to decrease the likelihood that

someone would bump into her

hurt arm and shoulder inducing a flare

and wasting more spoons

most importantly whenever we would go

out i would always offer to get ice

cream

not because we ever really needed ice

cream but because it was a built-in

break

allowing her a chance to rest and

recover

without feeling guilty for making a stop

if there’s a person in your life that

has a chronic illness

i encourage you to listen to their story

my sister the crps warriors i met

and everyone with a chronic illness has

their own unique story

and while those stories will be unique

becoming a good ally will always start

with learning

and understanding from their stories

i’m sure it’s really hard to talk about

one’s illness over and over again

but from my experiences

when you come back asking more complex

questions

people are more than glad to share more

with you

it’s because you went home you

internalized

their pain

you learned more about it on your own

and you came back

asking new questions trying to better

understand them

these are all examples of restoring

visibility

once you do this you’ll start noticing

new things about the person with chronic

illnesses in your life

for example my sister has elodinia the

condition i spoke of earlier

that has to do with hypersensitivity to

touch well whenever it was a

windy day out i would always try to

stand in front of the wind

and although of course i wouldn’t block

all of it

i hope that i would at least be able to

block enough

so that it wouldn’t induce a flare

that showed that i was there for my

sister

and that i understand and see her

you