Real Talk by KPB

The wind is howling and I cannot sleep.

This morning, I woke caked in sweat and moaning out in pain. I was confused when things finally came into view; the sun was blaring through the curtains and I didn’t know where I was, but I knew I was not home.

My body speaks before I do.

I slept on and off most of the day because every moment I am awake is a song sung by the rhythm of this nasty, unwavering pain. I struggle through each second, and I pretend I am somewhere else but I am never anywhere else.

I’ve had back to back to back flare ups since February, or maybe it was October or maybe it was 2009. I can’t remember the last time my mouth wasn’t hurting me, or my knees weren’t aching.

I hang with certain people who believe that we are responsible for the negative energy that our bodies process into weakness and illness. I am not totally on board with this theory, but I started an inspirational journal on my computer just in case.

I write cheesy, needlepoint phrases that ultimately, I believe to be stupid. And it’s that black, unbelieving thought that some might say is the reason I cannot seem to get better.

And I can’t: the debts are accumulating in my body. I have not been to the doctor since February, when my health insurance expired. I thought it was coming back April 1st, but I have to wait another month. When I went in February, I was told I needed to undergo an insane battery of tests, and I have a list written down of things I must attend to, but it will wait until May.

You can get through another month, I wrote. You can do this, I wrote again. Every moment is worth living! I write these things over and over again.

But it’s not! It’s not!, I want to write. THIS MOMENT SUCKS, I want to say.

I don’t know how to try anymore, how to write more positive things on a blank Word document and fully embrace and believe them. I want to be earnest, and I want to be positive, and I want to believe that things are getting better...

I read through old text messages with a coworker the other day and I was almost surprised at how unhappy I was this time last year. I was about to embark on a solo journey to Europe, and I was embittered, enraged with the world for dealing me this hand: shitty diseases that won’t go away, a weird, bad relationship, a job I hated, and a problem with booze that was steadily getting out of hand.

Perhaps I knew then that I had the power to change a few of those things, because eventually I did it. I got rid of the painful relationship and the awful job and I stopped fucking drinking like I wanted to become an alcoholic, another statistic.

I know that I am happier now, and that good things have happened to me, and that I must have had something to do with that.

But I cannot force this disease away, no matter how many times I write YOU DESERVE GOOD THINGS! on this here very page.

The pain deludes me. It forces me to be consciously aware of every moment it roars, and it forces me to be aware of how badly that moment sucks, how desperate and lonely it feels, and what I would do to get out of it. It sucks, really badly, no matter how many deep breaths I take.

Yesterday I was at Becca’s. I was playing basketball and soccer with her son in the yard and holding her babies and I was distracted, and therefore not fully aware of the pain. I asked for a glass of water and when I drank, the pain rose up again and I let it lie and then, pumped by andrenaline, accidentally threw the ball over the garage.

Later, I met up with Erica and I drank and ate salty foods and it hurt but I was having a good time and so I didn’t care as much about the brutal pain. It was okay, even though I wanted to scream that sometimes, I am better than this, sometimes I am funnier, sometimes I am kinder.

The pain had distracted me and turned me down, turned my real self down, down a notch. To head nods and quiet, choked out whispers.
There are moments I live in pain that are full and beautiful but are made less so because of the physical ache.

There are moments in my life that are full and beautiful and untarnished by pain.

I guess I am saying is:

I live for those.

I live for both of those.


  1. dude i can't even imagine!

  2. I'm glad you have your words. They understand you better than anyone.

  3. You're so strong. It's okay to feel that this moment sucks.

    What you write echoes so much of what I'm feeling right now in a depressive state. I feel guilty for not cherishing every moment like the good hippie I am. I feel like I can be nicer, and have more clever jokes, but I'm just not quite present in my own skin.

    oxox we'll both get through this.

  4. While I don't have lupus, I do have chronic throat sores and abscesses so I do understand that specific hell (combined with no insurance). All I can say is, fuck, I hope that you can find some relief.

  5. I don't know you but have followed you silently for a couple of years. So sorry for your pain, so amused by your twisted sense of humor, so impressed with the changes you have made in your life, and so AWED by the way you craft words. You must, must, must keep writing . . . I can't even begin to comprehend the agony of getting through each day, but please know that this old gal is praying for you and sending peaceful, healing thoughts your way.

  6. I secomd the last comment!!

  7. Somethings in life are so difficult to understand and comprehend for anyone. You have a love for life that is evident with all your humor and even in your terrible times of illness and suffering. So many take their lives for granted and dont see the everyday beauty of health. You speak in truth and you dont pity yourself for this difficult path that you have unfortunately been given. You are a survivor and I know you cherish every good day you have and look forward to the future. Keep writing. You have a gift to all.