Use your voice and tell your story
[Music]
it was a friday night in december almost
five years ago
i sat at home and counted the words i
had said the last nine months
it had been five
five words in the last nine months
which are 39 weeks
273 days
5 seconds filled with voice
5 000 hours filled with silence
at that time i never imagined that this
would last years
now
six years later
i’m here
using my voice
it wasn’t sure if i would be able to
speak to you personally or
if i need a backup speaker
i’m not used to standing on a stage and
giving a talk
in fact i’m not used to talking to
people in general
i’m not only a shy introvert but also a
human being with a limited speech
function
due to an ultra rare disease called
eagle syndrome
so
you don’t have to worry that i will talk
too long
it’s
it’s one of my biggest flaws but also my
greatest power to attract men hey she
only talks 20 minutes a day that’s
awesome
i don’t want to make fun about illnesses
or sexist jokes just citing comments are
already heard
and i know most people feel
uncomfortable when talking about
diseases
but jokes and open an entrance to the
most serious topics
that’s why i’m here today
i’m here to tell you my untold story i
want to use my regained voice to tell
you what special gift you have
because your voice can change the world
some years ago i studied french and
psychology philosophy at university in
vienna because i wanted to become a
teacher
i sang in a choir i love deep talk with
my friends
until
one morning i woke up with an extreme
pain in my throat
and suddenly couldn’t speak anymore
i had lost my voice it was gone
literally gone
i experienced other strange symptoms
i had difficulties at swallowing i could
not move my tongue properly
i could not open my jaw turn my head
normally
and every food i tasted um
tasted like paper which is
a fact that still bothers me sometimes
today and it’s really annoying because i
love chocolate cake
and every struggle
but honestly it felt like 20 knives were
stabbing into my throat and my voice box
was permanently inflamed
i thought it would be over soon
but that wasn’t the case it held on
and the worst thing was not a single
doctor could explain the reason for my
symptoms
so
after
dozens of examinations without results
i was told i was suffering from
psychological issues
you know
when you suffer from pain 24 7 and get
told from experts
that
it’s imaginary
you feel powerless
some offending words by certain doctors
caused me severe anxiety
i lost my trust in people
i feared that nobody would believe me
anymore that they would all think that
i’d gone crazy so i started hiding
i escaped from friends at university i
stopped going out i isolated myself
no medication worked on me all my dreams
were shattered i was 21 years old and
fought every minute to survive that
illness that was invisible for others
but real for me
so why am i telling you that
all the time when i had no voice
i was ashamed of myself i felt more
worthless and estranged
losing my voice was like
losing a part of myself like
my personality crumbled away
all my identity was based on my voice
and
suddenly i was forced to be silent when
everyone else continued to be loud
i’m sure that many of you know that
feeling
how often have you remained quiet
even if you had important things to say
people sometimes ask me
what is it like to live a life without a
voice
and of course there is the option to
learn sign language
but i never looked into it because
[Music]
my chronic pain pushed me strongly to
search for the right diagnosis and later
for the right therapy
so
even though language sign language is so
helpful for so many people for me it
would have felt like abandoning my voice
i didn’t want to accept my voice loss is
permanent
so yeah i communicated with pen and
paper and text messages on my phone with
my parents
so how can i describe it to you
what it is like to live without voice
you cannot say good morning to the
person you wake up next to
you cannot say mom i need your help
you cannot say thank you for being there
you cannot order a simple cup of coffee
you cannot take part in conversations
you feel excluded
you cannot say no because everyone
thinks silence is a form of agreement
cannot say sorry for a mistake
you cannot sing under the shower you
cannot laugh you cannot scream you
cannot cry
does this sound familiar to you
one of the happiest days in the last
year was the day i finally got my
diagnosis
a little black ink on white paper was my
proof of being sane
it was my proof that the excruciating
pain that had been disbelieved by so
many doctors was not just in my head
it turned out that i had that uncommon
illness called eagle syndrome
first described by an american ent in
1937
there are two main types of the syndrome
the vascular and the classic one
the classic one
explained all my symptoms and is really
really rare
such a long time i had been told that my
scans were normal
but suddenly overnights i
belong to one of
0.16 person people worldwide
who have shark elongated bones or
calcified ligament in the throat that
goes from the scalp vein to the hyoid
bone
and damages certain brain offs
muscles and blood vessels causing severe
problems like
swallowing difficulties
reduced tongue mobility
throat pain ear pain face head neck pain
sore throat
feeling like someone is strangling you
brain fog dizziness
and voice problems
the glossopharyngeal and vegan neuralgia
are also called suicide disease
because they’re so painful
it’s been a long medical journey
until today and it’s still not over
i had two complicated head throat
surgeries
visited 50 doctors did 2 000 pain
therapies
traveled 45 times to
six countries and 14 cities around the
world to receive special treatments for
my condition
which was so exhausting
i missed my family
i cried at too many airports even asking
for a glass of water was impossible for
me
and when i returned home my immune
system was so weak that i got infections
every week
epstein bar virus long-lasting fever and
blood poisoning
made my nervous system collapse so that
i couldn’t even go for a walk
i spent summer’s bedridden in dark rooms
hiding from the sun
feeling guilty because my parents had
spent so much money on my body
that didn’t function at all
but
i knew that i wasn’t the only one
so i went back to university
and started doing research on social
impacts of these untold disease
patients from four continents took part
in it
i found out that
aspects apart from pain aspects like
delayed diagnosis and clinical labeling
can lead to stigmatization
dissatisfaction in relationships and
emotional loneliness
many people
imprisoned in their bodies experienced
medical gas lighting waited for 15 years
for their diagnosis and were considered
hypochondriacs although they couldn’t
handle their pain anymore
they couldn’t work or take care of their
children
i read alarming postings in the internet
of people
who would rather be dead than to live
with that illness
i recognized the value of having a voice
and the importance of speaking up
so one day in a small town in the
netherlands i changed
it was
close to christmas i was abroad for
medical treatment staying in my hotel
room
watching other tourists going out hand
in hand for a hot drink
while it was beautifully snowing outside
and at the moment when i was
sitting in my cold bed and
feeling so
lost and broken
i asked myself
if i will ever be able to laugh again
so yeah i say to myself you can either
hide and be forever alone or you just go
out there and tell people the truth
about you and this creepy illness
so first
i overcame my fear of rejection
i went out with pen and paper and
initiated an awareness campaign
i blogged about my health journey i
shared my experience
i started to write poems and
make people understand me i ask
celebrities to lend me their voices for
a youtube video to look for
international help
my friends filmed it
and those artists spoke for me and all
patients with this rare disease
we almost reached 30 000 people
even the president of austria supported
my message
it was an act of solidarity and
shows that when we have our voices heard
great things can happen
i am still not fully cured
i depend on expensive therapies every
day and
my pain gets back my voice gets lost
and i still hope for new treatment
options
but all i want to say is
it’s very unlikely
to
fall ill with eagle syndrome fortunately
so most of you have the physical ability
to speak
unlimited
the
only thing that is holding you back from
speaking your truth is yourself
when was the last time that you said
something meaningful to someone
is there a conflict you want to sort out
for so long but you’ve always been too
afraid
do you ever wish you’d like to express
but you never dare to
i know that many of us live grief suffer
and even love in silence
when my voice was gone i regretted
not having told people often enough how
much they really mean to me
i thought it would be forever too late
being silent can be beneficial for some
time sure
you turn to your inner self reflect grow
but if you don’t express for yourself
for too long it can be destructive
if we want to experience true intimacy
and connection and change
we have to risk opening up
communication makes us human beings
one of the reasons why
introverts highly sensitive
very intelligent talented people often
remain quiet
is because they think that their words
don’t value
i’m here to tell you your words matter
never underestimate the power of your
words
your words can comfort other people
your words can empower them
your words can make a difference
to all those beautiful quiet souls out
there you deserve to be heard
and you will be listened to
you will be understood and you will be
supported by the right people
don’t be ashamed of who you are
dare to tell your story
change the world with your voice
and say i love you to the person you’re
madly in love with
thank you
[Applause]
[Music]
you