June 17-June 19: What’s Been Going On

Think about a time in your life when you felt utterly and completely alone. A time when the world turned its back on you. When the vast number of people on a street or in your house faded like an echo. Hope dried up–like a cracked riverbed in the desert. You felt the reality of isolation as acutely and as infinite as one soul laid bare in a raging, howling winter storm, standing, the only one in the world, frozen and dying on the middle of steel-frozen lake. No one cared–not one person is 7 billion. This was a time when you finally understood that ending your life wasn’t what you had thought it was–it was a siren’s song, an alternative to trying to continue to endure what had become unendurable. The people in your life (if you had any) were not there, your family was silent as the grave, and for the first time in your life you understood the full meaning of loneliness.

Now, imagine you’re not just alone on that frozen lake–you are not just an one entity in a selfish, cruel and unkind world. You are just as alone but you have the added bonus of being trapped in a malfunctioning machine that is backfiring and assaulting itself. This machine is falling apart and injuring you with every second that passes. You are you, but you’ve been reduced to a snarling animal inside a locked cage. Your mind is screaming at you to run–to get the hell away from this machine that is slowly and deliberately trying to destroy you.

Now, imagine that machine that’s trapped you is not mechanical, but biological.  It is your own body that has trapped you–your own body that assaults you, causes you debilitating pain. That is what it is like to have a faulty body made for a purely physical world. A body that attacks you–a body that is against you. All this because of faulty genetics. It is purgatory descended into hell. Being alone is something we all deal with but being alone, trapped in a body that can’t keep itself together, is a whole new type of hell. One few people will ever experience to the extent that I have.

I don’t know how it is possible for my body to produce and contain this abject pain and suffering. How it does it–how my body can handle that intense pain and excess stress I really don’t know, and that’s on a good day when the pain fluctuates between a normal-six or seven out of ten (ten being the worst pain you can imagine). The last three days for me I’ve been at a constant level eight pain. But yesterday the pain started spiking towards level nine. And today the pain has not dropped below a nine.

I’ve taken double of everything today and that hasn’t touched the pain. So to say I’ve had a bad day is a dramatic and insulting understatement. I think that having this pain is not something that I will ever get used to–I don’t think it is something anyone can get used because some days, on days like today, it is very easy to forget that life is actually worth living.

Just admitting that, breaks my heart.

But, I know two things for certain.

One, some part of my spinal column has shifted, creating a bulge on my spine–the pain caused by that is unimaginable to everyone unless you’ve been through something similar.

Two, I experienced a bowel prolapse about a month ago, since then normal human functions have slowed to a stop, and if I eat–I throw up, so these days I live on a diet composed of mostly liquid and toast, and I try to have at least half of a normal people meal.

When I say I am utterly alone, I mean I live in a world incomprehensible to most people.

Because of all these terrible health issues, I’ve pretty much living in a state of constant terror. As it seems, I may not only have EDS Hypermobility Type, I may have another type.

I am terrified because on the 20th I have a big appointment; one where I have a sinking suspicion that surgery is going to be brought up. I don’t know what’s going to happen next.


Waking Up

We could have been something.

Instead, we remain nothing.

You came into my life. You helped to heal a part of me I thought had long ago been eroded away. You took me by the hand and led me back into the light. But it is my choice whether I decide to stay there.

I will no longer wait for someone who lets fear rule their life. When you give fear an inch, it’s already won. You’ve already lost.

And, I’m not waiting anymore.

I’m done.

And there’s freedom in that; in finally being able to move on. We part ways today, in a specific way, but I still wish you well. I really do hope you find your way. And, I hope that one day you will find happiness. I won’t ask you for more than you can give. And I’m not going to blame anyone else for your mistakes. You’ve chosen another life. And I’m not holding onto a hopeless hope that one day you’ll wake up.

We’re done, not that we were ever really together. Whatever we were, we’re not. So live your life, and I’ll live mine.

We were never meant to be.

My life has become a very confusing episode of friends. I honestly do not know how that happened. And things have gotten weird so my friend is now sleeping on a cot in my room. And I feel like reality and the surreal have split, and I’ve fallen into this abject time and space that is a crazed psuedo-Alice-In-Wonderland echo. So I’m going to try and sleep and see where I wake up.

why oh why

is life so grim

what is my purpose

what is my calling

how can i create a better world

when will i see the light ?

when will i see the payoff

when will this pain go away

when will i get to change the world

and am i even trying ?

treading close to the shore

unable to move any further


There is far too much on my mind tonight. I’m wrestling with demons left and right. Memories have come crawling to the surface–talons outspread, wreaking havoc on my security and mind alike.

Inside, I have these secrets.

Things I desperately want to say–stories, I need to tell, but I can’t bring myself to do it, for the fear of a fallout, humiliation, fear, and shame. I know if I told my story, some wouldn’t believe me, others would condemn me, and all I really want is some peace, just for a little while. But deep inside of me, I feel like in order to finally accept what has happened, and move on, I need to tell my story. But I don’t want certain things getting back to certain people. But, I want to stop worrying about them. I don’t want to hide from what happened to me anymore. Overcoming what I had to, has changed me, and this pain that I’ve conquered is a part of me now. Lying about it any longer isn’t possible, it is just doing myself a disservice. It’s sacrificing my worth for people who don’t even care or deserve it. I keep these secrets because I want to protect myself and my family…even if it was only one of those secrets that would make them hate me. But why should I protect the people that are responsible? I shouldn’t.

I’m tired of constantly running, constantly trying to fit into some mould–to filter out my unpleasant realities and shocking revelations. I’m tired of running from this part of me. But maybe, instead of shouting it from the rooftops, I’ll work on learning to face it as it comes to me in my day to day life. I won’t lie about it any longer to anyone; I’ll face it, accept it, and start anew.


In the numbing grey, a single seed

Shatters; it self-destructs.

An emerald stem –teeming with life– winds its way unknown

A single stem punctures soft soil; needing, reaching…

The Incandescent; life reborn



I don’t think my family will ever understand. They just won’t. Sometimes circumstance is out of your control. Sometimes life throws your worst nightmare at you. Sometimes things get beneath your skin and they stay there. They don’t leave. Sometimes things mean more than what you say. Sometimes stories are more important than air because without them you know you wouldn’t be breathing. Sometimes there are memories that are so strong and visceral that they pull there–all so you can re-experience the horrors of your past. Sometimes, somethings you don’t mess with. You don’t touch. You don’t joke about. Sometimes, the only acceptable reaction is rage–once you become silent about the injustice in the world, you start to lose something you will never get back. Sometimes there is more to the story than what you know and you should just shut up and listen instead of talking without hearing.