Do not judge a girl
by what you can see,
She may be fighting for her Life
from an incurable genetic disease.
She could be a girl suffering
with chronic pain and tiredness,
Who can’t remembering what it’s like
to not feel completely broken and helpless.
She could be a girl who is full of hardware,
like screws, rods, and stents, trying to keep her body together
after a series of unfortunate events.
She could be battling brain damage and trauma
which has majorly changed her life.
She could have relearnt how to walk and talk,
see and even read and write.
She could be living with a brain clot
not knowing when her last breath could be.
Would you believe it if you were told she’s had five lifesaving neurosurgeries?
She could be living a life full of uncertainty
not knowing what tomorrow may bring.
It could be a normal day at work
or another admission to a hospital wing.
Even though she may be different
from what she’s remembered to be,
One thing’s for sure, she hasn’t lost sight
of her goals and dreams.
People say “but you don’t look sick”,
those words are very hurtful.
If only they could walk in her shoes
to see she is in fact disabled and now how fragile.
Yes she may be smiling,
but sometimes it’s just a mask
To cover how she’s really feeling,
hoping they don’t ask.
Because at times it’s difficult
for her to face the Truth
Of her struggles, pain, and limitations,
and the so many things she can no longer do.
So she fights for her health each day
Tries to bring hope and help inspire
Others who may be fighting battles too
who have lost their way, purpose and desire.
But if you take a moment to really look
at that girl who “doesn’t look sick”
You will see her inner strength beyond her smile,
That Girl You See Is Me.
ABOUT THE AUTHOR:
Laura Sylvester is a 24-year-old petroleum geoscientist and patient advocate for chronic illnesses, especially the Ehlers Danlos Syndromes (EDS). She is from Surrey where she studied for her Masters at Imperial College London. Laura is currently recovering from having 5 lifesaving neurosurgeries this past year resulting in being wheelchair dependent, and having to re-learn how to read, write, and walk again. She is one of the first EDS patients from the UK who has undergone pioneering brain shunt, brain stent, and multiple spinal surgeries in the USA. Laura was diagnosed with EDS along with many co-morbidities in 2014 and since then has dedicated herself to being a ‘voice’ for the EDS community via her role as Education Advisor for The Ehlers Danlos Society and sharing her medical journey on her blog: www.mindbodyeds.me