The life and death of a blossoming rose (poem)

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 déjà vu 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.

Part of the I Am Number 17 awareness campaign: I Am Number Seventeen (geneticalliance.org.uk)