my-illness-and-me

[my-illness-and-me]

I am constantly trying to communicate something incommunicable, to explain something inexplicable, to tell about something I only feel in my bones and which can only be experienced in those bones.

#chronic illness #invisible disability

[my-illness-and-me]

And one day you will write about the birds, But now, right now, there’s an ache that wants to be named. You will never name it.

Instead, you learn to bear it. With your naked knees, kissing cement, bleeding. You tie it around your ankle and drag your feet across your bedroom floor, even if it kills you (it will not kill you.) When your stomach stirs from the grief you buried years ago, you will heave out the filth. You’ll make room for your heart again.

And you will write about the birds. They will not be caged.

#chronic illness #chronic pain #prose poetry

[my-illness-and-me]

A person with many words and few voices sits beside me all the time.

They have no face, but I’ve decided that it’s beautiful.

And I know the feeling of speaking for the sake of filling up space And thinking only for the purpose of living.

And they don’t have a name but I’ve decided it’s the one I’ve always wanted.

And they don’t speak, but I sense the sadness.

I know of longing unspoken.

They have a loud acquaintance, With a face and a name, And they take and they take And i hate them.

For my silent friend cries tears just to fill up their cup And the demon holds it at the spine like it’s garbage.

But you asked for this

You asked for this. I say

But neither of them can hear me. And neither of them will ever know.

#poets on tumblr #poetry #writers and poets #young poets

[my-illness-and-me]

She died at 7:07 a.m. EST. It is 5 hours earlier in Hawaii. Does that mean in Hawaii she hasn’t died yet? But the plane ride to Hawaii is 12 hours long. This time gap can never be overcome. The difference is called grieving.

#disabled #chronic pain #chronic illness

[my-illness-and-me]

Sometimes, I feel the past and the future pressing so hard on either side that there’s no room for the present at all. I know that I did not die when I was supposed to, but why should I be grateful for this extension of my life when it means I have to deal with all this pain?

#chronic migraine #chronic pain #chronic illness

[my-illness-and-me]

Doctor, Why am I sick?

His white cloak covering his arms. Reaching for my heart. Thump. Thump. Thump.

I don’t know why you are sick.

What does it mean Doctor?

The click of his pen excavates the room. One look up. One word down.

I can’t read his scratchings

I can’t say.

Will I die?

Not even ripples form in the swell of his eyes. Still. Water.

I’m drowning in his words.

We all die.

When?

Soon.

God.

What becomes of the doctor, Who does nothing to help his patient?

He will be punished.

#chronic illness #chronic pain

[my-illness-and-me]

Monday

I hear the doctor tell me that six months could be lived free or a few years could hurt. 

I don’t hear much of anything else on the way home.

Our babysitter asks what’s wrong when she sees us.

I tell her that she might not have to come in for a while and she tells me my son is sleeping. She hopes that everything is okay and I don’t tell her that it’s not.

At the dinner table, I tell my wife that maybe I’d like to leave after six more months living instead of a few years waiting to die.

She wants to say she understands, but she’ll always want longer.

Longer doesn’t always mean more time, I tell her, taking her hand, but not her eyes. 

Those are stolen by the little ones, standing in the middle of the room that he heard us order an empty chair for.

We were worried he might not understand it, but he did because he asks me not to leave at all. 

I tell him I don’t want to. It would never be my choice.

He says please.

Ever since he learned it, he’d said it like a magic word.

All kids do, I think.

They believe it could get them anything they could ever want and I start to wish that he could’ve believed in magic for a little while longer.

Tuesday

This morning I get mad at God before I ask for salvation. The sky never says a word and I wonder if he’s just like magic.

I ask online how many memories we have from when we were five before I ask if my son will be okay.

Someone tells me that the hole never fills, but life grows around it. 

How it was like that with her mother and I ask if that just means forgetting because I’m afraid of it.

I ask her if it’s ever hard to remember her mother’s voice and she doesn’t reply.

I wake up my son and ask if he wants to learn how to ride a bike.

Wednesday

My mom tells me that there’s an experimental treatment that’s had some success before my wife tells her we can’t afford it.

They get angry with each other instead of being scared.

My hands go numb and my chest caves in on itself.

I start to feel like a black hole.

I ask them if we can go on a walk before I swallow the living room.

My son comes with us and he asks if I can teach him how to ride his bike again.

I keep both hands on his side at first and I let go when I think he believes in himself, but he falls when he looks back.

I ask him what happened and he tells me that he thought my hands would always be there.

Thursday

The woman who lost her mother sends me a message.

She says that life growing is not the same as forgetting and she sends me a picture to prove it.

A little girl in the arms of a mother who lost her mother.

Her middle name is my mother’s first, she tells me.

I ask her if loss is only ever just a middle.

She thinks so.

I start to write letters for birthdays, weddings, anniversaries, graduations, and funerals.

The middle shouldn’t be longer than it has to be.

Friday

I have to tell the doctor by Monday how much time I have left.

It doesn’t feel like a question with more than one answer.

They both just mean not enough.

My wife tells me that whatever I decide, they’ll be there for me.

I don’t tell her that’s the part I’m scared about.

I call my mom and we start to talk about my son’s childhood like a eulogy

She tells me that she’ll be there to help him and his mother.

No matter what, she’ll be there for it.

I tell her that’s the part I’m scared about.

She comforts me like a mother does and I let her for longer then it takes to feel better. I want her to remember what it feels like to be a mother before she isn’t one anymore.

Saturday

The woman with a daughter sends me a message and asks how I’ve been doing.

I tell her that I’m afraid all I’ll leave behind is an empty chair.

She asks what about all the ones I’ve made full

A mother's, a wife’s, a son’s.

I tell her that’s the part I’m afraid about.

Her mother was too, she mentions. 

So every first Sunday of the month she visits her mother with her family.

She tells her about her granddaughter and all of the life that grew in the garden she’d planted.

They stay like that for a while until she’s sure her mother isn’t scared anymore.

I feel a little less scared when she says that.

Before I go, the woman tells me that she’s praying for me.

I let myself believe in magic for a little while.

Sunday

We’re all in the front yard watching my son learn how to ride a bike.

I tell my son before I let go this time and he tells me he’s scared to do it by himself.

My hands don’t have to be there to believe that they’re there, I tell him.

He nods and I let him gain speed before I let go.

He goes for longer than any of us thought he would before he falls.

We all run to him and I think to apologize for hurting him, but he smiles instead.

He asks if I saw how far he went.

I tell him yes.

Yes I did, I smile.

We stay like that for a while until he asks if he can go around again

We watch him for a little bit longer than the time it takes for me to decide how much time I have left.

#chronic illness #chronic pain #poets on tumblr #writers and poets

[my-illness-and-me]

I sit on my knees in the shower like an acolyte to a shrine.

I stare up at the shower head though lidded lashes and beg for a change.

I want to feel clean for once.

Sometimes I wish I hadn’t been brought up religious.

Maybe I wouldn’t be so sad if I didn’t feel so abandoned by the one who is supposed to be guiding me, if I didn’t feel so ignored by the one supposed to be hearing my prayers.

And maybe the acolyte and I aren’t so different.

We’re both just praying to be heard.

We’re both just searching for something to believe and hold onto.

But I wasn’t.

And I’m not an acolyte.

And I’m not kneeling in the shower to pray because I don’t believe in god.

And I haven’t prayed since I was a little kid in children's church.

And I still cry in my room when I think there's no one around to hear,

And my family’s getting older,

And the leaves still change in autumn,

And I still wish the water would finally rise enough to drown me.

#chronic illness #chronic pain #invisible illness

[my-illness-and-me]

I am so sick of being on so many meds. I'm only 17.

In the morning I have to take a propranolol (for migraines)

In the evening I take propranolol (migraines), prazosin (ptsd), cymbalta (mdd), vitamin d, and melatonin.

not counting rescue meds.

it's a lot to keep up with.

#chronic illness #chronic pain #invisible disability #chronic migraine #chronically ill

[my-illness-and-me]

are you ever in so much pain that it makes you sneeze? no? just me? lovely.

#chronic pain #chronic illness #invisible disability

[my-illness-and-me]

honestly my least favorite part of this whole chronic illness thing is the depressive episodes. i just wanna be happy.

#chronic illness #chronic pain #invisible disability

[my-illness-and-me]

how to be able to cross a road without having a panic attack no borax no glue

#car accident #trauma #ptsd

[my-illness-and-me]

i set up an email account under his name. sent him 12 emails in less then 2 hours. damn i miss my dad

Grief is so wild. I didn't cry when my dad died 2 years ago, but now in my junior year i find myself writing him letters and telling him how much i need him and about everything he's missing.

[my-illness-and-me]

[my-illness-and-me]

how to magically make the pain go away no borax no glue

#chronic pain #invisible disability #invisible illness #disabled #chronic migraine #chronic fatigue

[my-illness-and-me]

i'm so sick of my chronic pain making me feel like a ghost.

#chronic pain #chronic illness

[my-illness-and-me]

I don’t know if I should even go to the funeral.

He was your father. I think you should.

I haven't spoken to him since I was four. We weren’t exactly on good terms.

Was it weird? Finding out he was dying through facebook?

It was like I was a bystander to the end of his life. When he was supposed to be my life. And now it’s created this distance with the grief.

It feels so far away, but it’s still right here on my chest.

From what you’ve told me, loving him was like that too.

The last time I thought of him was so ugly.

What did you think about?

Why he had left. I blamed him. I blamed me. Both were right.

Have you been thinking about it a lot?

I can’t stop. The last thing I ever was to him was mean.

That’s not all you were though.

I know, but the good times are more like dreams than memories now.

I thought I had buried who he was to me, but now they’re burying him and I can’t remember when I started telling that lie to myself.

You’re not lying now though. That will help.

I have so much regret in me and I wish I could bury all of it with him. But I can’t. I’m stuck with it. There’s nowhere to put it.

Do you really think you could have had a relationship?

I’m not even sure I can call him my father.

Maybe he wasn’t. But you did love him. Even if loving isn’t what you did towards the end.

But I still fucking hate him too. And whenever I catch myself hating him now, it’s like it turns back on me. I hate myself for hating him.

We don’t bury that either. Everything, all of the hate, the anger, the complication, it’s all still here too. Just heavier.

I think it’s going to crush me.

You have to go to the funeral. You can’t hold any more regret. And you will regret it.

What do I even say to my siblings?

You don’t have to say anything, but you do have to feel it.

Trust me. I am feeling it.

I know, I can see it killing you.

It’s like I’m grieving the love of my life and the person I hated more than anything else.

And that’s what you have to do, I think. Grieve everything he was. And everything he wasn’t.

That’s just so much fucking grief.

It is.

Maybe you’re right. Maybe I should go to the funeral.

Yeah. Maybe find a time where you can talk to him. Tell him everything you just told me. And everything else.

I’d be there all day if I told him everything.

Stick around after. Or find a quiet time. Trust me, it’ll help.

I don’t know if I can without falling apart.

You’re already falling apart. This is how you put yourself back together.

There are so many pieces.

And you’ll pick them up. One by One. And maybe at the end of it there’s some kind of closure.

I don’t think there is an end of this.

Maybe not, but there is still a life for you to live, It’s just not the one you were supposed to have.

I spent so long trying to tear that life down and now I want more than anything to live it .

I know. I wish I could take that weight from you.

I wouldn’t let you even if you could. It’s all I have left of him.

Then hold onto it. Just don’t let it crush you.

#grief #regret #loss #dad #dead dad club #dead dad stuff