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]

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