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Tonight I light every candle

Tonight I light every candle

For in five and a little less than half hours
Ten years will have passed
Since half my mind
Left half my body
And a new life began


/Never once was I ever left alone/

So on April the 25th
On my brother’s birthday
The day Grandma Adams died

At 4:25am
When the hemiplegia set in

This anniversary I’ll celebrate
the faithfulness of forests
Breath in lungs
Songs in trees

For every time they drove me
Just to feel the breeze

And the water flow beneath my feet

The poetic irony here being, migraine destroys all my attempts at returning such faithfulness. I only can depend on pain returning, but know not when or where, it’s duration, or intensity. For those who were strained beyond what their unyielding plans could bear, we have loved through heart emojis sent less and less often until obsolete. Those never truly lost, but faded like flash fire I still hold dear. Still find tooth-filled smiles in rooms only my heart can embrace. I miss their arms. They do not miss mine, for they do not think of me. To bothered by my broken promises and freed by the cut ties of friendship. I love them like stars without heat.

New friends, I struggle here to make.
Flames quick to light never last. I feel like, wet wood. Hilarious, waterlogged and drought cracked in the same being. Of course, I would. I am always two. Never not been.

But this is not about me
This anniversary.

This is to all who drove five hundred miles
Slept under new roofs
Ate dust
Swam in sulfur

Plastered and mortar
Those who made a house
into the best home it could be,
tried to bring I back to me
Those who went into the pines
dropped dead juniper to heat
our water through winter

Sisters who don’t share DNA
Calling me out
Across mountains
Still believing
There was something
Worth receiving

Those who remember
I have a heart ever-breaking
Not just a head
But a soul resurfacing

I’m not dead yet
Though they said I would be
A decade it’s been
I’m grateful to thee

#ChronicIllness #HemiplegicMigraine #Migraine #MightyPoets

1 comment

I'm new here

Hi, my name is Clint Irwin. I am a 33 year old male. I was born as a premature identical twin. I was diagnosed with Hydrocephalus at a few days old. Then Cerebral Palsy a little while later. I have Spastic hemiplegia. I was diagnosed with depression at seventeen due to underlying trauma from my childhood and then GAD a couple years ago. I hope this group can be a good support and help me gain new perspectives. Also, maybe help others too based on shared experiences. Thank you for reading.

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The Pain of Seeking Pleasure

Informed consent has and forever will be a defining trait of pleasure seeking. Battle plans and girded loins give way to forces of more friendly fire.

I apologize. I have not now, nor will I ever be astute enough to pen prose of lust-altered minds, pure attraction or physical responses.

This is about the every day simple pleasures everyone seems to easily indulge in, innocuous in their trivial pursuit. Innocent as it is, claiming experience has the power to remind us nothing in this existence can be taken for granted.

Even the sweet tea maybe laced with triggers.

Which is to say, I didn't see this one coming. Not the hemiplegia, I'm used to that. I've accepted the loss of physical control and executive functioning at any given moment, med-gods don't know why.

It's the emotional stability I miss. It's the predicability of my mental health I'm still grieving. Every time I pridefully affirm I've won the war… all I takes is an app like Voilà AI Artist transforming humans into cartoons, to prove the ambush is constant and I've battles to wage.

Every pixel had been in perfectly in place as I scrolled through social media. I could pick my friends out of a lineup should they find themselves in Sheriff Wood's jailhouse.

At first, I resist. Vanity or pride, my high-brow culture of Buzz Lightyear references wouldn’t allow me to take part in something so ubiquitous, or maybe I was just scared.

Look before leap! I chose the snaps I felt best of, which is getting harder these days. Agony has a way of eroding facial features. It's supposed to be fun, right? Cliff jumping? I used to love it as least.

But there it is. Pain where pleasure should be.

The same inconsistencies I know are breaking through the surface of my mind. No matter how many pics I try, the right side of my face is on a sliding scale. The AI rending my heart in as many pieces as there are Picassos starring back at me, mismatched and unbalanced. Yet none quite to the same extent.

A gallery of pain now hides in the data banks of my iPhone. Words are my refuge, I fill the incurable void with rhyme without reason.
But this, this is photographic evidence.
Selfies taken on days I weathered the light, because the beauty of life was worth it. Portraits taken when I thought I had the pain hidden.

Violà! With these pixels, I could paint my own personal pain scale.

For life, I choose to fight one more day.

For pleasure, I choose to gaze upon the water, for change is inherent in her nature. A mirror to the sky, whether still as glass or churning up treasure. She holds life within her, gives life to those who take her in.

I will cross her Pacific again one day. 2020 was the fire which lit the fuse to finally renew my passport. I haven't crossed international boundaries since Hemiplegic Migraine clipped my wings. It's time to earn a stamp in this new passport. The fourth in as many decades I've wondered this earth. But those four pics are a whole different story.

#MentalHealth #Migraine

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A sense of belonging: battling CPTSD with Cerebral Palsy

Have you ever felt completely alone in the world, like you didn’t belong? Ever had that feeling of being misunderstood and constantly challenged by the society in which you live? Or being shunned and totally rejected by your parents, you know the ones who are supposed to love you without condition!! Well, if you can relate in any way, know this you are not alone.

Do you want to know what makes me different?

I was born with Cerebral Palsy (right-side hemiplegia) and secondary scoliosis in the 70’s’ and attended a Special Needs School, up until the Education laws in the UK were amended, mainstream school was fraught with needless conflict, I can tell you that!

My parents were never accepting of my disability as it appeared my being disabled had brought shame to the family. Invitations to family days out didn’t always extend as far as me, and I was made to stay home alone. I was also made to exercise everyday without any time constraints, and as you can imagine I absolutely hated it! Knowing this, my parents would also use exercise as a primary form of punishment. I could go on but you get the picture, my childhood was dark.

Surprisingly! I’ve spent the majority of my adult life battling symptoms of Complex PTSD. Who the f**k wants to be ‘normal’, and what does that even mean! Looking back on it now i’m like, give me (the child) a f**king break. It’s been an exhausting road with therapists who did nothing more than keep the repetition of trauma alive, all but one. I’ve not only managed to survive, I’ve come out the otherside. The strength it has taken to get here today is something that remains hidden.

I realised a long time ago that my Parents were never going to change, they are who they are and I needed to either accept that, or walk away! I learned that focusing on our differences creates nothing more than a chain of separation, I was not prepared to play party to that! I chose to stay, setting boundaries for my own self preservation. From there began the journey of learning my own worth. It’s important that when we look in the mirror, to not see ourselves as being broken in any way shape or form. We all hold a certain beauty within us and it just takes that one moment to see it for ourselves, unraveling all the misconceptions that have been placed upon us.

I don’t blame my parents entirely for their downfalls, as the construct of society has a huge part to play in how disability is viewed and thus treated. For instance, it is extremely difficult for a disabled child to recognise disability as a positive identity when they are continuously being bombarded with messages of negativity and devaluation on a day to day basis e.g will she get better, is there a cure, such a shame and poor little thing. There is also the issue of being the only one in your world with a disability which can make you feel even more alone, if that’s even possible.

May we all stop to think about the impact of our words before choosing to speak.~Katrina

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Knowledge = Power

There are so many people that don’t know that this condition exists
I felt I needed to spread the information

A vestibular migraine is a nervous system problem that causes repeated dizziness (or vertigo) in people who have a history of migraine symptoms. Unlike traditional migraines, you may not always have a headache. There are many names for this type of problem. Your doctor might also call it: Migraine-associated conditions such as ...

Hemiplegic migraine. A short period of paralysis (hemiplegia) or weakness on one side of the body. You might also feel temporary numbness, dizziness, or vision changes.

Ophthalmic migraine. Short-lived, partial, or complete loss of vision in one eye, along with a dull ache behind the eye, which may spread to the rest of your head.

Migraine with brainstem aura. Dizziness, confusion, or loss of balance can happen before the headache. The pain may affect the back of your head. These symptoms usually start suddenly and can happen with trouble speaking, ringing in the ears, and vomiting. This type of migraine is strongly linked to hormone changes