IFPA presents World Psoriasis Day each year, the global community unites to raise awareness and call for action in support of people with living with psoriatic disease. World Psoriasis Day has been celebrated on October 29th for more than a decade. Today, World Psoriasis Day is observed in over 50 countries
HANDS TO CARRY
By Siphokazi Jonas
World Psoriasis Day 2022
On the Christmas holidays of childhood
My grandmother’s rural homestead was a Mecca of gathering
for our extended families.
A potpourri of generations converged on that tiny village
from all around the country.
Every person had their place:
at the gates, by the fireplace, or in the fields.
Adults unpacking fresh gossip with large bags of flour,
and cases of something to heat the blood.
As children we turned work into play from sunrise
until the calls came for supper.
Drinking water disappeared quickly in the South African heat,
and every two days, we would make our own pilgrimage
to the shared village tap –
hard plastic drums piled high on wheelbarrows,
and a thrilling ride down the rain-trenched pathways.
Others had iron buckets swinging from their arms
like baubles on Christmas trees.
Everything was light on our way down the hill,
we were empty of care,
flying in full wingspan from the lip of a wheelbarrow like the Titanic.
When the water reached the mouth of the bucket,
something else filled us up
as the weight of the moment dawned on us.
Community was nurtured in us in these moments.
A scattering of individual bodies became one mind working through many hands,
helping each other to lift containers onto heads and into wheelbarrows.
No one lifted a full bucket alone or set it down without more hands
to guide and hold steady.
We bore the weight with each other’s strength.
On the dawn of World Psoriasis Day
we are challenged to help hold each other steady
to help unload the burden and quench the village.
Over 60 million people are inflamed by the rage of the fire of psoriasis
and the potential of this disease sleeps in all our skins.
When it awakens without warning
it fills one to the brim and takes up space.
It takes up space in the body,
patch by patch,
the evidence flares and flakes everywhere.
Endless nights and days of itching for relief
of long sleeves and pants and dresses
of wishing not to be seen
of being a stranger in one’s own skin.
It takes up space in the senses.
In an assembly of ointments like ammunition for war
The scent which follows one everywhere
betrays you as a soldier in battle for well-being.
The hours and weeks passing in hospital beds
bathed in harsh light and medicines whose names
you cannot forget along with your own.
The neighbours and strangers
With a mouth full of family recipes and remedies
and not enough knowledge.
It takes up space in the mind.
The endless horizon of a chronic existence
the cost which cannot be measured
the body you no longer recognise in the mirror
the self you feel you have lost
the fear of this awakening in your children
the stress which triggers
the languages which do not have a name for this disease,
which do not allow you to describe your pain in your mother tongue.
The whispers, the stares, the pointing
the pain which holds you captive
the fear of being a burden.
Over 60 million people live bearing the weight of water,
filled to the brim with things which cannot be understood
unless you have lived through them.
On this day, we join the chorus of voices who say,
“It is safe to put your burdens down here.”
Calling on a village of hands to reach out:
hands to soothe hard-to-reach places in the body
healing hands of healthcare workers under hospital lights
hands which write laws to write the right ones
hands which help unpack thoughts and heal the mind
hands which open doors to treatment for all.
May our hands reach out to knowledge
educating ourselves on what we do not know
to unlearn a cultures and words which harm and ostracise
to call out those who use them
to dismantle beliefs born out of ignorance and fear
which isolate one from community,
and to challenge stigma out loud.
On World Psoriasis Day, and every other day,
To be the voice that says,
“Feel free to show up in your short sleeves, your bare feet,
and all the complexities of your skin.
Around here, we see you wholeheartedly,
and we are ready to be quenched, together.”
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