From Plan A to Plan Z Living beyond LoeysDietz

at the age of 18

just after graduating from high school i

had my whole life

planned out plan a

i was going to spend my summer working

three jobs

i was going to tutor and travel

internationally

and in all of my spare time i was going

to

relax with friends then i was going to

head off to the amazing school that i

was accepted to

where i was going to get involved in

every single club

i was going to study abroad twice i was

going to double major

get a super cool internship and line up

an awesome job for after graduation

in the off chance that this plan didn’t

work out

i could always fall back on plan b or

maybe even plan c

in july of that summer i did start to

feel a little bit off

but it was probably just a cold or

pulled muscle

and it wasn’t enough to slow me down

even my doctor said a bit of ibuprofen

would be the fix

but on the morning of friday the 13th

not that i’m superstitious a radiologist

called

they said unfortunately we misread your

chest x-ray

and you actually have a spontaneously

collapsed lung

they said that i wasn’t stable and i was

going to need to rush to the er

so that they could place a chest tube in

my side

they said probably you’re going to need

to spend the rest of the weekend

in the hospital until we can get this

sorted out

this was not plan a

after a chest tube another spontaneous

lung collapse

and an emergency lung surgery totaling

about a month

in and out of the hospital i decided to

go ahead

and move nine and a half hours away from

my freshman year of college

i was so excited to arrive because

all summer i had told myself if i could

just make it to school then

this all will be over and then i can

start to get my life back to normal

i was ready to move forward with the

plans that i had made

in the way that i had imagined those

plans going

but i quickly learned that bodies don’t

always just bounce back to health

in fact i faced so many unusual

and unexplained complications that i

ended up needing to take the second

semester off of school to focus on

healing

and this just was not plan a

i was spending most of my time in and

out of doctors offices

and getting a ton of testing done and

doing anything in my control

to speed up this recovery process and by

the end of the semester

i had a name for the problem i

have louise deet syndrome has anybody

ever heard of louis steet syndrome

so that’s my family and friends and they

heard about it because of me

but nobody else has their hand raised

and that

that is how rare louis deed syndrome is

it is a very rare genetic connective

tissue disorder

and it causes a myriad of issues all

over the body

including heart and lung problems

musculoskeletal issues allergies

aneurysms and much much more

lewy steet syndrome is a lifelong

condition and there is no known cure

this was not plan a this this was like

plan z

it meant that instead of just bouncing

back to health

i was going to need to start learning to

live beyond this

so as i began to cope with my incurable

condition

i started to notice the people around me

frantically searching for a fix

i was being offered oils and diets and

meditations

and exercises and therapies all in hopes

that something

was going to fix this problem and people

would ask me

are you back to normal yet or did you

get better news from the doctor this

time

as if one day i’m going to go to the

doctor and discover that the mutation

in my genetic code has magically

corrected itself

here’s what i’ve learned i’ve lived most

of my life with this condition

unknowingly and that life was full of

unanswered

medical mysteries but now that i have a

name

a reason for being a medical anomaly

i have a real opportunity to start

taking this new information about myself

and leading a more fulfilling life

this wasn’t plan a but plan a is

it’s just no longer an option for me i

don’t have perfect jeans

and i do need to spend my school breaks

visiting doctors and i will

never get back the hours

that i have and that i will be spending

inside of an mri machine so i’m left

with plan z

and plan z is okay see

after facing the worst case scenario in

my health

i’m still able to find immense

opportunity and value in my life

despite needing to take a semester off

school in my freshman year

to focus on healing i was still able to

take some of the most

interesting and fulfilling electives in

my college career

and despite my lung capacity falling to

almost 60 percent

at one point i still managed to become a

captain

of a club sport and

despite being discharged from the

hospital only a week ago

because of my second emergency lung

surgery

i’m still able to stand here today and

speak at tedx hope college

see just because i’ve received this

incurable diagnosis

doesn’t mean that i can’t lead a

meaningful and

purposeful life it just means that its

purpose

is not what i had thought that it would

be

we’re often presented with roadblocks in

life and when people face these

roadblocks they tend to describe

the before and the after before they

were diagnosed compared to after

before they lost a loved one compared to

after

before their career failed compared to

after

the grief that we feel about the before

times

it’s real and it’s painful and it’s

challenging

but when we do find ourselves sitting in

the aftermath of a roadblock

we’re faced with a question are we going

to spend every waking moment trying to

do the impossible and

shape our lives back into the before

or are we going to choose to start

stepping forward

in any capacity that we can

choosing to step forward leads us to

healthier choices

better resources and more fulfilling

relationships

part of learning to move forward is

learning to become a self-advocate

in my case i was living with a rare and

invisible disease that was giving me

symptoms

that no one else could see or feel

as i began to realize that these

sensations may not be normal

i started down a long path of

self-advocacy

in fact little hints that something

might

not be quite right with me were

sprinkled all throughout my childhood

i was having growing pains without

growth spurts and seasonal allergies

and every single season

my feet are always cold and purple and

they even found a heart murmur when i

was 12.

none of these issues point to a major

problem individually

but together that’s a different story

and it’s my job to tell that story

today i’ve learned that i need to be

keeping the binders of information

and research that my parents and i have

gathered throughout the years

i’ve learned that i need to be keeping a

copy of the louis diets diagnosis

protocol with me

at all times to hand to medical

providers

who have never even heard of louis deet

syndrome

and i’ve also learned that i should be

making a set of goals for

every round of appointments and make

sure that those goals are met within the

calendar year

your situation could be medical but it

also could be

financial relational career related

whatever the case you are the expert

on your own experience no one will be

able to look at you

and know just exactly what you need

and this is why i believe that it’s our

responsibility to become a self-advocate

being a self-advocate means that you’re

able to describe your situation

in a way that allows you to ask for help

and that can be really uncomfortable

it means that you’re able to acknowledge

the situation

identify what will most help you find

resources that can offer that help

and risk facing rejection when asking

for help

but without doing this without learning

to become a self-advocate

we really might be missing out on the

opportunity to become

resilient

who do you think of when you think of a

resilient person

maybe it’s someone who was slow to

speech

and struggled through school only to

become one of the greatest

minds in modern human history someone

like albert einstein

or maybe it’s someone who lost a limb

practicing the sport they loved most

but are still able to compete against

the highest ranked professionals around

the world

bethany hamilton see we

hear stories of resilient people every

day

but we remember the miraculous ones

and it’s important to note that in these

resiliency stories

we tend to shorten the months and years

of tireless work that these people have

done

to overcome their circumstances into

just a sentence or two

so when that helpful stranger

tells us one of these stories to inspire

us

we start to compare the mountain of work

that we are facing with just that

one sentence that we heard

albert einstein he had to spend a whole

lifetime

an entire career defending his

intelligence and his ideas

and bethany hamilton she had to learn

how to paddle

and balance and even hold on to her

surfboard in an entirely different way

after losing her arm this dangerous

comparison

it diminishes the progress that we have

made

and it devalues our story

see i don’t have a wild story i lived

with non-specific symptoms for 18 years

i had a lung collapse and went through

rigorous testing and received a rare

diagnosis

and today i’m choosing every day

to live a full life and to define myself

beyond

the limitations of my condition

and if i never told you that if i never

told you

any of this today you would never be

able to look at me and know that about

me

but in choosing to share my story

through my blog and social media

i’ve been able to connect with people

around the world

i’ve heard from other young women who

share the same diagnosis

i’ve met classmates and students

who similarly struggle with health and

i’ve even heard from

a few freshmen whose plans were

uprooted by a pandemic

i had no idea how badly i needed a

community until i found

this community full of other people

whose plans also quickly changed from

plan a

to plan c and there was something really

comforting and knowing

that other people had survived their own

worst case scenarios

and that really i wasn’t alone in the

aftermath of my diagnosis

and that that is the value of my story

it’s this community that i found and

it’s the hope that i’ve inspired

so today i ask you to share your story

even if it’s not going to become one of

the greatest epics

share your story because you don’t know

who needs to hear it

or the friendship that you could find

because of it

change the plan learn to advocate and

share your story

these are the lessons i’ve learned in my

time living beyond louis deed syndrome

thank you