generate
stay
slow
seal
here
- by Sean Medium
Belgium
Tag: hope (Page 2 of 3)
Disease is a discord, friction, dissonance, a flatted fifth every righteous composer wants to avoid, but hearing it in music it makes the tune much more interesting and edgy.
So, no, I don’t really believe in controlling or managing a disease as something external, as a bank account, or as a puppy that needs to be trained to fetch, sit and bark whenever you think it’s appropriate; or a dissonant chord that needs to be rewritten so that a tune can sound neat again.
What I believe you can do is try to understand it, understand yourself and your disease without being intimidated by the managerial narrative, economic discourse or regimen requirements. Embrace it as a part of you that needs to be heard, and healed. And dance to its tune, even if others can’t hear music in this messy noise, and even if your back is stiff as hell.
- by Katarina Juvancic
Author’s website
Slovenia
| Deeply submerged in the melancholy of the dying summer with my knees telling tales of the approaching cold and winter. My bones, surrounded with tumor necrosis cytokines causing acute and debilitating inflammation are dreading it.
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My body is a place of pain. My body is also a place of unutterable solitude, longing, and love. Love holding my cells in place. Love feeding them and helping them communicate better. I must find that place every time the system that keeps them in check collapses. I must remember it is here, all the time, ubiquitous and ever present. I need to embrace my disease and live with it as best as I possibly can. But most of all, I need to find a sustainable source of warmth and store it into my bones, so that they can sing songs of sun, warm breeze and golden evenings like this one all year round.
- by Katarina JuvancicWebsite
Slovenia
I went to see occupational therapist today, as I am having troubles with my daily chores.
She asked some challenging stuff and burst into tears when I talked about my medical past. Then she told me her most intimate and painful story. I held her hand and we shared a beautiful moment of vulnerability together. Two women who have never met before and should conduct the conversation in a strictly professional, clinical manner, holding hands and crying.
I told her how precious it feels to be able to share our stories, to treat each other’s broken pieces with understanding, respect and dignity.
Then she put some bandages on my hands and taught me how to stand, how to sit and how to bend. She welcomed me softly into my new reality where little mundane things carry huge meanings. Today I feel I’ve finally put my life vest on.
– by Katarina Juvancic
Slovenia
After struggling with ear problems all my life and having two surgeries for Cholesteatoma in 2008 and 2015, a recent flare up has caused months of pain that is unexplained and has baffled my consultants. Having this on top of my original ear problems and cluster headaches sometimes the pain can make days difficult. This is just a glimpse into what happens on a daily basis.
Me. Pain. Intertwined.
Days. Coping. Bad days. Flare ups.
People. Confused. Understanding Difficult.
Hidden disease.
Medicine. No effect. Doctors. Befuddled.
Decisions. Hospitals. Waiting. Pain.
Hidden disease.
Explaining. Constant. Tiring.
Symptoms. Unexplained. Words. Lost.
Hidden disease.
Tired. Exasperated. Threshold. Pushed. Sometimes. Beyond Limits.
Tired. Sore. Always. Hidden Truth.
Tired. Battle on.
Hidden disease.
People. Unconditional Love.
Caring. Trying to understand.
Hidden disease.
Pain. Intertwined.
Always there.
Nothing seen.
Hidden disease.
This is me.
- by Amy Hunter
United Kingdom
On Scarborough beach, I played football.
This image is one of my new paintings. It is autobiographical and consists of two halves. One half reflects my early life growing up in Neepsend, an industrial area of Sheffield. The other half depicts me, as a child, on the beach with my football.
- by Paul Allender, @pauliepaul55 at instagram
U.K.
Eight months of pain, guilt.
Losing my movement slowly,
Affecting my work.Pain in my hip, back,
Encroaching on everything.
Physio: please help.Boss can’t understand,
Pretended it wasn’t bad.
I used to be fit.
Practicing patience,
Trying to be kind to self.
But some days that’s hard.
- by Vanessa
[This image shows my legs in better times, when they were still able to take me on a 15 kilometre hike through the Rocky Mountains. Summer, 2017.]
Canada
The snow and salt on your coat
suggests that you’ve been outside
shoveling, maybe, or
tossing snowballs for the dogs.
But in fact it’s the dogs who have
brought the snow and salt inside,
flinging it onto your coat
when they shake it away.
Your coat hangs on the back of a chair
and you haven’t been out all day.
You’ve been mostly in bed because of the
new and unfamiliar but not
unexpected pain in your hip,
Another joint your illness
is colonizing in your body.
You can only watch the dogs
play in the snow,
young pups again,
their own bodies slowing even faster than yours.
Black dogs,
white snow,
white snow,
red counterpane,
the outside in
where you can
be in it.
- by Kendra Preston Leonard
Author website
| I stumble I fall I break I mend I get back upI keep stumbling I keep falling I keep breaking I struggle to get back up I listen…I feel pain I burn I weep I scream I listen….I lose sight I lose control I lose meI ask myself Who I, Want me to be? Need me to be? Make me to be? |
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I struggle
I adapt
I alter
I shift
I cope
I listen
I define me
I defy being defined by illness
I the author
I the architect
I the enforcer of my life journey
Define Me
I find me again
I see me now
Do you see me?
- by Shanali Perera Author website
U.K.
His hand closed up over the stretch of five years, and stayed like that till he passed. First the pinkie, as if winched towards the palm by an invisible string, and then the ring finger went, till his hand was frozen stiff like a claw. It was like it had slowly snapped shut, sixty years late for the butterflies we’d chased in Parson’s field. It was no worry to him, he chuckled, his pipe still fit between his fingers.
- by Philip Brennan
