Stronger Together

The life and death of a blossoming rose

Image of June

What ails you darling child?

Mum would say to me in creeping fear and despair
Crying in hopeless abandon of the unknown
As the tears washed through her soul
Kissing my little face to the comfort of my cradle
Hazed in the smokescreen of my teardrops
Revealing a searing pain that was yet to be called eternal
The insufferable pain and suffering
Host to flawed genes forced to offer a lifetime of trauma

Blossoming a very painful flower, and pricked by a deadlier thorn
Becoming of a life where my cells were attracted to pain
Tranced from the delirium of opiates
Repressing beautiful and yet sordid memories
Losing my childhood to a disease
In constant victory over my cells destroying its home
The unpredictability of the CRISIS
An invisibility that burns and destroys to become a burden in itself

You don’t look sick, they say
Yet hips frail, ready to be replaced like that of my 89 year old nan
Organs and parts on a gradual trajectory of destruction
My body trapped in my pill pot and masked by the façade of my red lipstick

Science says I am on borrowed time
4 decades to live if you have those nasty cells that sickle
But I have only lived 3 decades going on 4
And I have gathered more damage and infarctions
As I have with travel stamps on my passport

Every 6 weeks
Blood of kind strangers run through my veins
Needed to survive by treading water constantly
My life a recurring tale of dejavu
Oscillating from hospital corridors
To midnight ambulance trips
Needles, blood, oxygen, meds, needles, blood, oxygen, meds
Wheeled in and out of xray rooms and theatres
Hours of days in sitting in doctors’ offices
Dark and lonely wards, where there are no words
My body failing me like a consistent betrayal from an untrusted friend
Like I was to atone for my own very existence

The universe handed me a lifetime of pain
And then showed me a path to flourish
Nearly didn’t break me but it killed me every minute
So I learned learn to find meaning and make sense of my world through just being
Living between days of pangs of pain and days of thriving in a storied life I wrote in my fairy-tale dreams
Like my spiritual animal, a colourful butterfly on a midsummer day
Watch me take off
from the runway of my flickering flame
to glistening grace
where I bask in freedom
and allow myself to be saved, loved and helped
letting my desires fly to the mercies of the moon

Written by June
…And still, even at this very second, babies are born with sickle cell globally.

My plea to the world

Please get genetic testing prior family planning and help eradicate this disease from the world

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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