“Why do you have a stick?” – this is a question I get asked very often. In this spoken-word poetry piece, I share why I do, and the role Ehlers-Danlos syndrome plays in it all.
As I post this, it’s May – which also happens to be Ehlers-Danlos syndrome awareness month.
So, if you would like to watch this video, then you can right here on my YouTube channel:
If you would like to read it, then you can here:
“Why do you have a stick?”
“People are curious beings
They always like to know
But it usually begins with a stare
Then out comes a question, real slow“Why do you have a stick?”
“Have you had an injury?”
“Aren’t you too young to be sick?”
Or, “have you had surgery?”I don’t mind answering,
I really don’t
Because
I want to build awareness
I want to spread the wordThat you can be sick, disabled
And require an aid
That chronic illness can be genetic,
Autoimmune,
Or remain unexplained.That there is no “starting age”
It can trigger at any point
Factors may vary
But when it hits,
It disappoints.It breaks your heart
It changes your plans
It puts your life on hold
But your strength, expands.Your family hurts
They feel fear
But they grow too
Seeing you persevere.So back to the question,
“Why do you need a stick?”
Because my legs are unstable
From having EDS.Ehlers-Danlos syndrome
A connective tissue disorder
Causing pain, swelling,
subluxations
forcing me to readjust, reorder.It brings with it challenges,
Consequences I can’t predict
But using a walking stick
Keeps me better equippedMy sticks save me
from uneven pavements.
Helping me to live a fuller life
Reducing the extent of this ailment.But I find, very few people
really wish to know why
the explanation is possibly too much
so they quickly end it with a sigh.Then there are those
that are okay to hear
I see genuine empathy
I see genuine care.
They wish me all the best
And I wish them the same
As we all have our challenges
Some appear obvious, but some
still unclaimed.”
(Written on: 11 April, 2023)
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If you resonate, or wish to share your own experience with disability, Ehlers-Danlos syndrome or anything that you connect with here, then do drop in your comments, your thoughts in the comments sections below.
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I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.
