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