Slipping Beneath the Waves
Some days, hope rises,
a fragile whisper that maybe, just maybe,
there’s a world beyond this cage.
The pain shrinks to the edges,
a shadow you can almost ignore.
But today is not that day.
Today, I am drowning,
dragged under by waves
of relentless
Some days, hope rises,
a fragile whisper that maybe, just maybe,
there’s a world beyond this cage.
The pain shrinks to the edges,
a shadow you can almost ignore.
But today is not that day.
Today, I am drowning,
dragged under by waves
of relentless symptoms,
each breath heavy, each moment cruel.
The air tastes like despair,
and I remember:
there is no way out of this sea.
A friend slipped beneath the waves today.
Another light extinguished,
another soul consumed
by the same relentless tide.
How many more will I lose?
How many more before it’s my turn?
The reflection is sharp:
this body is both a prison and a grave.
It holds me, but barely.
What I would give—
oh, what I would give—
for just a single moment
without pain,
without the weight of this disease.
To breathe without shackles,
to move without chains,
to simply exist
in a world that doesn’t hurt.
But today, I only exist.
Hopeless.
Watching the water rise.
-Giusiana
The Second Christmas
The tree still glows, its branches dressed in light,
But shadows linger deep inside tonight.
This is the second Christmas I’ve endured,
Where joy feels distant, stolen, obscured.
I am barely here—my
The tree still glows, its branches dressed in light,
But shadows linger deep inside tonight.
This is the second Christmas I’ve endured,
Where joy feels distant, stolen, obscured.
I am barely here—my body worn,
A fragile vessel weathered and torn.
Seizures claim many moments, confusion takes the rest,
And I, a ghost of who I was, try my best.
The gifts lie waiting, wrapped with care,
Yet my hands are too weak to meet them there.
The feast, a symphony of love and art,
Sits untouched as this illness tears me apart.
I retreat to my room, away from it all,
The lights are too bright; the sounds only call
To the pain in my head, sharp and unkind—
A world too harsh for this fragile mind.
This isn’t how Christmas was meant to be,
Not this quiet ache, this silent plea.
I wish I could rise, I wish I could mend,
But I wonder instead if this fight will end.
No star guides me, no warmth to defend,
Just the ache of a season I cannot transcend.
Christmas fades like a song turned to air,
Leaving only the grief I can hardly bear.
-Giusiana
Oddmall 2024: A heartwarming story
This weekend I was at selling at Oddmall, a huge vendor event hosted at the fairgrounds. After last year’s success, I was starting to feel quite disappointed with the results of this weekend - I was in so much pain, hardly
This weekend I was at selling at Oddmall, a huge vendor event hosted at the fairgrounds. After last year’s success, I was starting to feel quite disappointed with the results of this weekend - I was in so much pain, hardly selling anything and I barely broke even with supply costs.
At a typical market or fair I usually get quite a few “I like this” or “love your work” and even some people commenting on how touching it is.
But what really means a lot to me, is the people I meet who really feel my artwork. The people who it touches. The people who share their stories with me.
Saturday evening I was approached by a mom and her daughter. The daughter (probably tween/early teen?) came up to me and said “I want you to know you’re not alone in some of the things you deal with, I really understand your paintings”. Moments like this are what I look forward to while selling. Seeing that my art isn’t meaningless, it makes a difference. I thought that was the end of our interaction…
To my pleasant surprise she returned Sunday and started talking with me again. She quite shyly handed me a set of earrings, a drawing, and a small ziplock of change. Her mom told me that when they got home last night she read my bio and saw my gofundme for medical costs. She wanted to help, and scoured the house for whatever she could find to help with my medical costs. She created a beautiful and heartfelt drawing for me and came all the way back the next day to give them to me.
Today, this little girl, with her drawing, her ziplock of hard-searched 82 cents, and her big heart made the whole weekend worth it. All of the pain, the medical episodes, the stress and the lack of financial success don’t matter, what matters is that someone felt less alone because of my work. It always means a lot to me when people are touched by my art, but this interaction brought tears to my eyes. I was that girl once, who was living with something that it seemed no one understood. Sick. Invisible and unseen.
She said I made her feel seen, but little did she know that she made me feel seen too. That conversation has been replaying in my mind ever since she left. Her drawing will now be hung above my desk and never forgotten.
Juniper, if you’re reading this, thank you for being brave enough to talk to me. You’re a beautiful and thoughtful person. I may not know what you go through, but I know you’re incredibly strong. Don’t ever give up or lose hope. (Also, contact me, I have something I’d like to give you)
- Giusiana
Poem: Broken Promises
You promised me safety,
swore you’d protect me from the dark,
but it was your hands,
your voice,
You promised me safety,
swore you’d protect me from the dark,
but it was your hands,
your voice,
that tore me apart.
I was weak,
barely holding on,
a medical crisis pulling me under,
you said it was for my good,
but I know it was for your hunger.
You were the one I loved,
the one I gave my trust.
But when I was at my lowest,
you turned me into dust.
You called it love,
said it was care,
but what kind of love leaves bruises
in places I can’t even share?
You said I was crazy,
possessed by demons I couldn’t see.
But it was you all along—
it was always you,
breaking me.
I can still feel the betrayal,
the weight of your lies,
as you whispered sweet nothings,
while slipping off with other women
behind my eyes.
You cheated,
you lied,
then called me insane.
Twisted the story so well,
they took your side
while I drowned in the blame.
You turned our friends against me,
made them believe your deceit.
I was the broken one,
the liar,
the one who couldn’t see.
But I see you now.
Playing the part of a saint,
while you fed on my pain,
leaving me hollow and faint.
I didn’t want to believe it,
that you could be this cruel.
But love isn’t love
when it’s used like a tool.
I’m alone now,
with this truth like a scar,
but I’ll carry it,
I’ll survive it—
even if you go too far.
You vowed to protect me,
but instead you tore me apart.
And now I don’t know how to trust,
because the one who broke me,
was the one I gave my heart.
- Giusiana
Poem: Want to Live
I want to live,
not just survive,
not just tread water,
gasping for breath in the ocean of a body that feels like it's betraying me.
I want to live.
Not in the numbness of "getting
I want to live,
not just survive,
not just tread water,
gasping for breath in the ocean of a body that feels like it's betraying me.
I want to live.
Not in the numbness of "getting by,"
not in the shadows of pills and procedures,
of "let's see if this works," and "maybe next time,"
of the invisible chains that tie me to my bed when the world expects me to run.
I want to live.
I want to feel every sunrise deep in my chest,
not as another battle I have to fight,
but as a gift—wrapped in fire and hope.
I want to wear joy like a second skin,
not a mask I put on to make you comfortable.
You ask me how I’m doing,
and I tell you “fine,”
because you’re not ready for the storm behind my eyes.
You’re not ready for the truth that “fine” means more than I can explain.
That “fine” is the warrior’s whisper after a hundred sleepless nights.
That “fine” is not good enough.
Not for me.
I want more than fine.
I want laughter that makes my ribs ache in the best way.
I want to dance in this broken, beautiful body,
even if it’s only in my mind.
I want to stretch out my hands and feel the world,
not through a fog of fatigue,
but with the fire of a life fully lived.
I want to live,
not just survive.
I want to say “yes” without hesitation,
to plans that don’t come with a checklist of "what-ifs."
I want to dream big without calculating the cost of my energy like it’s currency I never have enough of.
I want to be more than my limits,
to rise above them,
to shatter the ceiling that keeps me from reaching my own sky.
Because I am not my illness.
I am not my diagnosis.
I am not the quiet resignation of survival,
but the loud roar of a life that refuses to shrink.
I want to live.
And I will.
With this body, with this pain, with these scars.
I will live.
- Giusiana
Poem: Glass
I’m made of glass.
Thin. Brittle. Fragile.
Every step is like a gamble with gravity—joints slipping from their sockets like they were never meant to stay,
like my body forgot how to hold itself together.
I wake up, and the first
I’m made of glass.
Thin. Brittle. Fragile.
Every step is like a gamble with gravity—
joints slipping from their sockets like they were never meant to stay,
like my body forgot how to hold itself together.
I wake up, and the first thought is: What will break today?
Will it be my shoulder?
My knee?
Or my heart, beating too fast like it’s trying to outrun this shell of skin I’m trapped in?
I’m glass that cracks under pressure,
hairline fractures forming from these dislocations,
fingers that bend backwards,
legs that give out without warning.
I’m standing on the edge of myself, waiting for the cracks to reach their breaking point,
to shatter.
And when it comes— it always comes—
it’s not a neat break.
It’s fire through my veins,
burning pain that screams louder than I can,
pain that hums beneath the surface,
a constant reminder that I am not whole.
I faint from a heartbeat that races for no reason,
seized by my body’s betrayal.
Paralyzed by the weight of it,
the world spinning away as I lie still,
willing myself to move,
but there’s nothing there.
No strength. No power.
I’m a glass sculpture on a ledge,
tilting, ready to fall.
And every breath is a prayer—
Please, not today. Not today.
But the thing about being glass is,
even if you don’t break,
the cracks are always there,
just waiting.
And I’m scared of what happens when I finally do shatter.
Because what then?
What’s left of a body already in pieces?
What’s left when you’ve been holding on so tight
just to survive?
I’m fragile, but I’m still here.
Broken, but unbreakable.
….For now
-Giusiana
Poem: Slipping
I’m dying.
It’s not a matter of if, but when—
my body is betraying me,
cells turning rogue, organs fading,
pain etching itself into
I’m dying.
It’s not a matter of if, but when—
my body is betraying me,
cells turning rogue, organs fading,
pain etching itself into my bones,
dull, constant, like background noise
I can’t escape.
My blood doesn’t flow like it used to;
my breath catches, stumbles,
like a body that’s forgotten how to live.
Nobody cares.
Not really.
They see me breaking down,
watch my hands tremble,
my skin grow pale and fragile as paper,
but they’re too busy, too far gone
into their own invincibility
to recognize how close death stands to all of us.
The doctors—
they shrug,
say there’s always someone worse.
“You’re not there yet,”
as if that should bring me comfort.
Not yet, they say,
like my organs collapsing under their own weight
is just another plot twist.
Like I should be grateful
for another day of walking this tightrope,
even though the fall is inevitable.
They don’t understand.
They don’t get that the people who are “worse off than me”
were once where I stand—
on the edge,
still able to fight,
but slipping, always slipping.
If they had been saved then,
in this stage where the pain is chronic but not fatal,
maybe they wouldn’t be on the ventilators,
under the knife,
past the point of no return.
But nobody listens
until you’re too far gone to hear them.
By then, it’s too late to go back.
It’s not a matter of if, but when
the disease will win,
when my cells will finish what they’ve started,
and no amount of white coats or sterile rooms
can pull me back.
I’m dying,
my body failing,
and nobody will reach out
until the “worse” becomes “worst.”
But the when is creeping closer,
its shadow growing,
and no one cares until it’s too late.
Too late for me,
too late for those who come after,
falling like I am,
invisible until we hit the ground.
Poem: Borrowed
I wake up in a body that feels borrowed,
stitched together with fragile thread,
ready to unravel at the seams.
My joints slip like they’re strangers to each other—
a shoulder pops out when I reach,
a knee buckles when I stand,
and I’m just left holding myself together
like broken glass...
I wake up in a body that feels borrowed, stitched together with fragile thread, ready to unravel at the seams.
My joints slip like they’re strangers to each other— a shoulder pops out when I reach, a knee buckles when I stand,
and I’m just left holding myself together like broken glass, pretending the pieces still fit together.
My spine pulls tight, tension building at the base, like I’m being torn apart from the inside.
My neck, so unstable, each movement a gamble, l feel I might lose my head, like there’s no strength left to hold me up.
Pain, sharp and burning, crawls through my nerves like wildfire. Some days it’s a dull ache, others, it’s a scream that never quiets.
I can feel it in my bones, my skin, my mind, this constant reminder — that I’m fighting a war I never signed up for.
paralysis— it comes without warning. One minute, I’m walking, breathing, existing, and the next, my legs give out, my arms go limp, and I’m left trapped, helpless in my own skin.
There’s no telling when it’ll come back— if it will come back.
My body holds its secrets close, I’m never clued in on the plan.
My brain is on fire, flames licking through every thought, a burning haze that clouds my mind,
makes me forget words, forget faces, forget myself. It’s like being here, but not here, present but slipping, and I’m terrified of what I’ll lose next.
Will I wake up tomorrow and not remember how to live in this body?Not remember how to fight?
My heart races when I stand, when I move, when I try to live like nothing’s wrong.
But something’s always wrong. It beats too fast, too hard, too eratically
and I can feel it pounding, like it’s trying to escape, like it knows something I don’t.
The world goes black, everything fades, and I’m gone, my body’s decided it’s had enough, it can’t handle gravity, can’t handle life on its feet.
And when I come back, it’s like rising from a deep, dark sea, gasping for air, wondering how long I’ve been gone.
Nausea is my constant companion, stomach twisting, food turning to lead.
I’m hungry, but my body doesn’t know what to do with it. Every meal is a question, a roll of the dice— will I keep it down, or will it turn on me, another betrayal in a body full of them?
When I finally eat, there’s the looming threat, the breath that catches in my throat, the rush of heat, the swelling fear that something as simple as a bite, a scent, a touch
could close my airway, could turn my body against itself in an instant.
Fear walks beside me, a shadow I can’t shake. It’s in the back of my mind — when I move, when I sleep, when I dare to dream of a life beyond this one.
What if today is the day? What if my body decides to quit? What if I’m too broken to keep going?
loneliness— Because no one sees it, this constant war I’m waging.
No one feels the dislocations, the nerve pain, the paralysis that comes and goes like a cruel joke.
They don’t hear the pounding heart, the fog in my mind, the nausea that twists me from the inside out.
I’m here, but I’m alone, fighting battles no one knows exist, living in a body that looks healthy to the untrained eye, The body that’s become my enemy.
And every day, I wonder how long I can hold on, how long I can fight a fight with no end in sight.
-Giusiana
Poem: Rare
I wake up each day, knowing that I'm rare—
but not the kind of rare you frame on a wall
or keep locked in a glass case.
I am rare in the way that no one understands,
no one knows
I wake up each day, knowing that I'm rare—
but not the kind of rare you frame on a wall
or keep locked in a glass case.
I am rare in the way that no one understands, no one knows my name
except when it's whispered between white coats
over flickering screens,
no cure on the horizon, no relief in sight.
They call it "chronic,"
like it's just something to live with, like a stain you can’t wash out.
But it’s not just a word—
it’s a shadow stitched to my spine, a ghost that haunts my veins,
Shooting through my body like faulty wires.
They say it's not deadly—
not yet, not now.
But the tightrope I walk,
day after day, could snap
with any whim of this disease.
a misstep, a whisper from my cells that says,
“This is the moment."
The fear isn't sharp—it's dull,
grinding me down to dust, slowly,
until I wonder who I am under all this weight.
I am waiting—
but for what?
For life? for death? for some middle ground
that doesn't exist in the language they speak.
I could scream, but no one would hear—
because when you're rare, you're invisible.
I am alone in this crowd of faces,
trapped in a cage of flesh and bones,
and all their eyes see are symptoms, but none of them see ME
How can I explain what it's like
to live every moment knowing it could be your last—
but also knowing it probably won’t?
To have the clock ticking, but never see the hands move.
It’s like drowning in air, surviving in fragments,
breathing in the fear, exhaling the unknown.
I am rare—
a curiosity in the corner, a question without an answer,
and I wonder, how long can I hold on
to a life that is neither life nor death
but something in between?
There’s no finish line,
no light at the end of this tunnel.
Only shadows.
Only the quiet ache of knowing
that I will keep walking, keep fighting,
keep breaking down
until there is nothing left of me
Only this rare thing I have become.
-Giusiana
Poem: Unsafe Place
You were my safe place,
my harbor in the storm.
The vows you whispered,
meant to shield me from
You were my safe place,
my harbor in the storm.
The vows you whispered,
meant to shield me from harm.
I trusted you—
with my body, my soul, my life.
But now your hands,
the ones I held with love,
became knives.
I was fragile, broken,
in a crisis you swore you’d see me through.
But you shattered me,
in the quiet of the night,
when I could barely fight,
and now I don’t know what’s left to do.
You said you’d never hurt me.
That’s what lovers say.
But you tore me open,
in the darkest way.
How do I heal,
when the wound wears your name?
How do I feel,
when love and betrayal feel the same?
I’m alone now,
but even in the silence,
your ghost lingers near.
The man I loved, the man I trusted,
became my deepest fear.
What do I do with these memories,
with the way your touch haunts my skin?
I never thought I'd fear the one
who promised to always let me in.
But you left me hollow,
left me torn in two—
how do I move forward,
when the one who broke me
was you?
-Giusiana
Poem: “I love you more”
“I love you more”
“Well I love you most.”
See you say that, but is it true? You say “deep down I always
knew, that I would die for you”
And maybe you would, that’s not a small feat. But day by day you
“I love you more”
“Well I love you most.”
See you say that, but is it true? You say “deep down I always
knew, that I would die for you”
And maybe you would, that’s not a small feat. But day by day you live, happy and free.
You’d die for me,
I’d die for you too. It’s true. But that is not why I love you more.
I love you most. Not because I would die for you, but because I am still alive for you.
You don’t know the pain. You don’t know the strain on my soul to keep living
To keep breathing despite this disease that is beating on my being
I love you most.
- Giusiana
Poem: Brain on Fire
Lost myself overnight…
I know you can’t see it, but if you look, can you see the terror in my eyes?
I don’t know what’s wrong with me.
I’m still in here, can’t you see?
Lost myself overnight…
I know you can’t see it, but if you look, can you see the terror in my eyes?
I don’t know what’s wrong with me.
I’m still in here, can’t you see?
I’m under attack
All I see is black
It’s taken my speech
It’s taken my memory
I’m no longer me, I’m changed
As a mood swing takes over my brain
Not sleeping for days on end
Everything I’ve ever loved is disappearing
Spasms, it’s controlling my limbs
Seizures, oh God, how will I live?
Hallucinations, I’m scared of what I might do
Psychosis, where am I?
Who are you?
Catatonic.
Behind my eyes, I scream for help, can you hear?
I want to die day after day
Even as I’m like this, I love you my dear
I only hope I can show you in any small way
Crazy. I’m losing myself
Am I crazy?
No
I’m not a liar
My brains on fire
-Giusiana
Poem: Hope’s Whisper
I’m trapped, ensnared in the suffocating embrace of overwhelming, never-ending pain,
As I sit here, the line between life and death blurs into obscurity, a fragile boundary traversed by the weary and the downtrodden.
And in the silence of the night, as the world
I’m trapped, ensnared in the suffocating embrace of overwhelming, never-ending pain,
As I sit here, the line between life and death blurs into obscurity, a fragile boundary traversed by the weary and the downtrodden.
And in the silence of the night, as the world slumbers unaware, I stand at the precipice of oblivion, tears streaming down my face,
torn between the longing for release, for relief, and the ever so faint glimmer of hope that dares to whisper, almost inaudibly: "Hold on, just a little longer….”
- Giusiana
Poem: Craving Touch
I miss human touch that didn’t hurt me. I CRAVE touch, I long for hugs, for sweet kisses. But it all hurts so bad.
A brush against my arm creates a shock so hard I recoil. A tender embrace nearly brings me to tears.
I do it anyway, for what is life without the
I miss human touch that didn’t hurt me. I CRAVE touch, I long for hugs, for sweet kisses. But it all hurts so bad.
A brush against my arm creates a shock so hard I recoil. A tender embrace nearly brings me to tears.
I do it anyway, for what is life without the comfort of human touch, but what would it be like if it didn’t make me flinch? I can’t even remember it. The comfort of being held is under the looming darkness of the pain that it brings.
-Giusiana
Poem: Stomach’s Curse
A plate is set in front of me on the table, my favorite meal, I go to take a bite but hesitate, what if I’m not able? I take a bite. Suddenly there’s a knife, stabbing me. It’s twisting inside me. The nausea washes over me in waves. I crumple into a ball on the floor and
A plate is set in front of me on the table, my favorite meal,
I go to take a bite but hesitate, what if I’m not able? I take a bite. Suddenly there’s a knife, stabbing me. It’s twisting inside me.
The nausea washes over me in waves. I crumple into a ball on the floor and wait, The pain only relieved with time
I sit up and force myself to eat. Holding back tears and nausea. Each bite is agony.
A few hours later, the stabbing stops and I feel I can breathe again. I’m bloated and my stomach feels heavy and my heart is racing. Life slowly fades to normal but I’m scared. I love food, and yet I live in fear of the next meal
Oh why must my body stop digesting food on its own whim? Why must this be my curse forever?
-Giusiana
Poem: Drowning
My pain is constant. It is, but it’s not that simple
At low tide, I can still hear the oceans dull roar and feel the waves crashing, they’re knocking me down but I can get back up. Yet I am not drowning, I’m keeping my head above the
My pain is constant. It is, but it’s not that simple
At low tide, I can still hear the oceans dull roar and feel the waves crashing, they’re knocking me down but I can get back up. Yet I am not drowning, I’m keeping my head above the water.
At high tide those same waves, previously survivable, become violent and overwhelming, pinning me against the rocks, crashing over me relentlessly until I can’t breathe,
just as I feel I might be able to get my head above water they come again, crushing me again and again so I can’t even catch a breath, not one.
When the tide is low, I live in terror, knowing all I can do is helplessly wait for the waves to swallow me again, maybe this next time there will be no low tide to save me from the agony that it brings. Maybe this time will be the time I drown…
-Giusiana
Poem: Sleepless
Tonight as I lie here sleepless, tossing and turning in a hopeless search for comfort, I wonder what I did to deserve this life. I wonder what I could have possibly done to deserve every single inch of my body aching. Every joint dislocating. Every bite is agony. Why does it hurt just to breathe? Such a simple function of life, what i would give for even one breath without pain..
Tonight as I lie here sleepless, tossing and turning in a hopeless search for comfort, I wonder what I did to deserve this life. I wonder what I could have possibly done to deserve every single inch of my body aching. Every joint dislocating. Every bite is agony. Why does it hurt just to breathe? Such a simple function of life, what i would give for even one breath without pain..
As I lie here I realize I am angry. I’m angry at my body, angry for making me fight it every day just to survive. My body, my closest friend when I was young, my freedom, my wings. My body, The physical embodiment of my imaginative play, has turned against me
You would be angry too, had you lived what I lived.
“How are you?" you’re asked. Everything hurts and yet you still reply with a smile "Fine, and you?" Speaking the truth would be too uncomfortable.
Your joints so unstable they give out with the slightest pressure. “Lose some weight, you're just fat”
Your limbs are weighed down with anvils, too weak to blink. “Attention seeking”
Your skin is on fire, your lover cannot comfort you, touch is agony. “Hypochondriac”
Your bones are shattered, you set your foot down, and tears well. Keep going, that's just the first step. “Drug seeking”
When you have pain in every part of your body, you cannot leave your bed, housework and hygiene neglected. “Lazy”
Pressure. Your head is full of so much pressure. You feel you might explode. “Crazy”
Your heart is racing. Chest pain. Blood pressure dropping, vision fading. You hit the floor. “It’s just anxiety”
Brain fog. Words escape your grasp. Simple thoughts and problems cause physical pain. Where am I? What am I doing? Dreams of college and a career fade away. "At least you don't have cancer"
No, but what is this life if just suffering in perpetuity? If there is no hope of a cure, no end in sight?
I'm angry.
The never ending appointments. Which doctor is this? Taking notes.
Explain everything in detail to the nurses, only for the doctor to know nothing when he arrives.
No answers. “Come back in six months” Six months? I'm sick now.
Please help
“We don't know what to do for you”
Who else might? You were my last hope,
Please help
“Try this med”
We've already tried this med, it doesn't help.
Please help
“We know what’s wrong with you”
Thank God, let’s fix it. There’s no cure.
Please help
Painful tests and traumatic procedures. It never ends. Phone calls, I'm on hold again. And again.
“Yes you can make an appointment, our next availability is 9 months out”
“Just advocate”. I try so hard, nobody cares, so then I do nothing. I just want to live.
Please help.
Do I keep trying or give up? The fatigue sets in.
Please help.
In the morning will the day be a little brighter? The pain a little lighter? For once, just once, I just want to wake up and feel like I can win this battle, the wars not over
I want to open my eyes, rested and painless, and feel like my day is going to be a success. Not awake and face yet another day, another battle where it's probable that I will not only suffer, but ultimately lose.
It's so difficult. It's getting harder by the day. It hurts the most that nobody understands. In a room full of people, I am so alone.
I wish more than anything to be normal, healthy, exciting, and live my life.
I want nothing more than to go to work, to see my friends and enjoy myself rather than lying in my bed, slowly fading away.
As I lie here in bed tonight, all I want is for sleep to come take me.
When i'm asleep, I'm no longer sad, the pain eases, the anger fades. I'm not lonely. The problem is, I cannot sleep. The pain is covering every part of me. The toll the day took on me is heavy.
When the world is asleep, I’m alone, it's just me and my pain. Alone with this disease that haunts me. Gosh that ceiling is interesting. The little irregularities in the paint, the way the dust on the ceiling fan sits. I'm desperate for a distraction. Please make it end. Oh why did my body turn against me? Oh why did It steal my life away from me? My plans, my dreams….
I’m angry. Because for a bit I was happy. For a minute I was getting better, even just a little
For a moment I had hope. But in a second I lost it all again. And that's when I realized it was not anger, But grief.
Tonight as I cry silently in bed, sleep evading me, I am not a fighter. I’m not a warrior. I’m not an inspiration. All I am is tired. my body is fighting a war inside and its left my soul as collateral damage.
Please help.
-Giusiana
A note about MCAS
Why must my stomach stop digesting food randomly? Why does my body decide that every aspect of the world is my enemy?
A guessing game. Russian roulette of life. This
Why must my stomach stop digesting food randomly? Why does my body decide that every aspect of the world is my enemy?
A guessing game. Russian roulette of life. This food was fine yesterday, but now when I eat it it will kill me?
Trigger my throat to close and body to break out in hives and me to lose consciousness and have a seizure?
Last night's leftovers would make a good lunch, but today they caused my heart to race and fingernails to turn blue
Yesterday I spent the day outside, tomorrow the sun will cover my body in hives… even my own tears burn my face
How can I prepare for something so unknown? Never knowing if I’ll be okay. Nothing is safe
My grandmother's body decided that her own saliva was the enemy, is that my fate?
-Giusiana
When we aren’t healed..
If you’re chronically ill, and tend to run in Christian circles, you’ve probably been told that you should be grateful for your illness, you shouldn’t be upset that there is no cure because God is going to use us without being healed.
But after those same people pray for us and ask for healing, they ask “So are you feeling better yet?”, And when we say no, when still sick, they get upset…
If you’re chronically ill, and tend to run in Christian circles, you’ve probably been told that you should be grateful for your illness, you shouldn’t be upset that there is no cure because God is going to use us without being healed.
But after those same people pray for us and ask for healing, they ask “So are you feeling better yet?”, And when we say no, when still sick, they get upset. They tell us that we lack faith or we don’t truly want to be healed.
Yes, God can heal. I’ve seen things that can only be explained by a miracle, He does heal. But no, He doesn’t always heal. There is no guarantee of healing.
For those who pray for a disabled person and they aren’t healed: you immediately resort to blaming the person, saying they must not have faith or they want to remain sick, what does that say of Job? Was his faith not real? Did he not want to be relieved of his suffering?
As believers we are not guaranteed healing, in fact, the only thing that is certain for us in this lifetime is that we will suffer. We can believe and have the strongest faith and still not be healed.
Maybe I won’t get better. In all probability I won’t. But I can use my pain to encourage others, to let them know they’re not alone.
2 Corinthians 1:3-5 - Praise be to the… God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort that we ourselves receive from God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.
Job 13:15 - Though He slay me, yet I will trust in Him.
Romans 8:18 - For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.
Psalm 119:71 - It is good for me that I was afflicted, that I might learn your statutes.
John 16:33 - I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.
Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.