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