Sunday, January 23, 2011


** DISCLAIMER ** I felt the need to warn you that, unlike most of my posts, this one does not have a positive ending. I could not bring myself in this night to think of one. I feel the need to tell you this because I want to bring you up, and I do not want this to bring you down. I may take this down, but I feel its equally necessary to put up, because it reveals my raw emotion and shares how I truly feel in certain moments. It shows how utterly painful it can be to live with a chronic illness. I do apologize if this post upsets anyone, and I do want to say, I truly believe with all my heart, even after the night I just experienced that IT WILL GET BETTER. Thank you : )

It’s 5 am Saturday morning. I’ve just awoken from a not so deep slumber, in that incredible pain that as soon as it hits you, every cell in your body is aware of what it is and how long it will last.

It is in this moment that I realize I am alone. Completely and entirely alone. There is no one I can call on the phone right now, not a soul who would truly understand. Those who would, any of my sick friends, are hopefully sleeping right now, and I wouldn’t dare wake them from what may be the only night of real sleep they are getting this week. My room echoes with silence. Alone. Eerily alone. I look out the window, and everything is standing still. There isn’t even the slightest breeze. It’s like the entire world has stopped, and time is frozen as this pain surges through my body, mocking me as it strikes. It strikes harshly, unapologetically, making me feel like I deserve this moment that leaves me short. Just, short. Short of breath, short of hope, short of understanding.

Just when I thought I was making some progress, it hits. Sometimes I’m afraid to think these thoughts, afraid to think “this feels better than it did last week”, because as soon as it enters my mind, I’m afraid it will be taken away from me just as quickly, as if it’s a game, as if this thing inside of me is more aware of my own thoughts than I am. It’s watching me-my every move. It listens to my every thought. It knows the moment, the moment that I forget how bad it is, the moment I truly believe it’s getting better, the moment I let go of that crippling fear, release that unexplainable sorrow and just let myself breath-it finds its way in. It reminds me of who I am now. It reminds me of the life I wake up to. It reminds me its always here-watching, waiting, lurking beneath the surface. It reminds me of how far I’ve come and how very far I have to go.

This is the kind of pain that is beyond human understanding. I feel comfortable making a statement as bold as this when I’m in this kind of pain. I dare you to challenge me on that, normal human who may be reading this.

I was supposed to see a friend tonight that I have not seen in a while. This is the third time in a row I had to cancel on her, and I felt absolutely heartbroken over it. I truly desired to see her, and can push myself to great extents, but tonight was one of those nights where even pushing myself, even for 30 minutes, was completely out of the question and one of the few times I say “impossible”.

I called her to apologize for cancelling, my heart beating so loud out of my chest I could barely hear her phone ringing in my ear. She picked up, and in a monotone voice, accepted my cancellation. She didn’t seem surprised, nor very disappointed, but as if I was telling her I would be 5 minutes late, or, “it’s raining outside”. The lack of change in her voice struck me in the stomach, and I felt a slow burn inside. My face turned hot as I stumbled around my words, then I began to cry. I apologized to her over and over, and lost myself as I began to say “I hate this, I really hate this, I wish I could change it, I was trying really hard to be able to get out to see you tonight..” to which her cool replies of “Uh huh” only made me feel like I could collapse with grief.

When we hung up, I looked around my room, the silence swallowing me. I am twenty-five years old. I am standing in my childhood bedroom in my parent’s home and…

I don’t know if it’s going to get any better.

Stop, Stop Laura, I say to myself as I literally shake my head as if to shake the thought out. But, I can’t shake it. I can’t stop the what-if’s tonight. I can’t stop the reel of memories playing through my mind, like an old movie- a familiar one where I know the scenes, I recognize the characters, and as I watch them I ache about where the plot turns, knowing how bad it gets.

I never thought it would get this bad. Say it. Say it to yourself, Laura. Admit it. Just own it. I never thought it would get this bad.

Cut to 5 am. I stand, swaying in pain, clutching my blackberry in my hand, wondering who to call. I stare at my phone. No one. There is no one to call. I feel like a stowaway, stranded on a deserted island. This must be what it feels like, this aching, frightful feeling of being utterly alone. It must be something like being the only one on an island, knowing that no one can hear you. No one hears me. I am speaking but they don’t hear me. This is real. Don’t they understand? This is as real as it gets.

But they’re used to it. They’re used to my tears, used to me saying “this is the worst it’s ever been” or, “this reminds me of the time I was at my worst”, and they shake their heads, nod, all the while most likely thinking this will pass, knowing the pain will eventually die down to a level in which I can breathe, most likely believing I am overreacting-or worse, actually believing it is that bad, but settled in the belief that there is nothing they can do to help me. How would you like to live in this body? Don’t you understand, there’s no way out for me! When we hang up the phone, or when you eventually leave the room and go back to sleep or back to whatever you were doing in your life, I’m still here in this one. I can’t leave this. I can’t step away. I can’t blow off steam during a night with my friends. I am trapped in here and I’m screaming to get out. GET ME OUT OF HERE. My skin crawls as pain surges through my body. I want to rip it off, step out of it and be free. I feel like the air outside of this is clearer. I can’t breathe right now. The air is too thick. Too thick with despair.

Who can I call right now? No, really. Who can I call? I search my brain. Is there a hotline for this or something? Some on call therapist at 1-800-Therapist? They should consider having such a thing, by the way.

Who do I call?

Emergency? What would I say?

“Hello, 911? It’s an emergency. I’ve lost everything. I’ve lost my whole life and I can’t get back to it. My body is in incredible pain. The pain is taking over and I can hardly breathe, and I’m all alone. Can you help me? There’s no one I can talk to right now. No, it’s not really an emergency. It is but it isn’t. It is in that this pain to anyone who’s never felt it before would be an emergency. It’s not in that I have felt it before, been down that road, went to the emergency room several times, and there’s nothing anyone can do to help me. I just need someone to talk to. I just need a hand to squeeze. I just need someone to tell me it’s going to be okay and to actually believe it. Sometimes it’s hard to be a believer. I can’t be my own cheerleader right now. I need someone to come hold my hand and believe with every piece of them that it’s going to get better. I need you to help me right now. I don’t know if I can do this alone.”

But, I will not call that number. And I will not say those words.

5:30 am. Infomercials and silence. Does anyone out there feel this way? I pace around and try to picture who else might be feeling this way right now. I say a prayer for them as I hold my hand to my chest “please release their pain”. I send the thoughts out there, hoping that whatever warrior is awake with me at this time, feeling this pain, may find some relief. I am with you, whoever you are. You don’t know me but I’m with you and I’m thinking of you. Are you thinking of me? Together we are not alone. I wish I could reach out and touch you. I wish I could wrap my arms around you and tell you I literally feel your pain.

Why is it that everything feels so out of reach right now? The world feels so small, confined to this bedroom, yet so large that it swallows me whole, and I am left behind. I am not walking amongst the land of the living. Yet somehow, I’m not dead. I am here. In this in-between land. It’s lonely and deserted. I know there are people out there who live in this world too, but I cannot reach out and touch them, and I cannot hear their voices right now.

I feel like if I screamed right now, my voice would echo into the early morning. I’m able to sit down now. I lay down, place my head on my pillow. The pain is still there, I shiver with it while I sweat, but it has exhausted me to a point where I can lay. I pull the blanket over my head as I curl in the fetal position under it. I have the television on in the background, on the lowest volume, to feel like someone is here, to feel like there is still a world out there that I can join one day. I see the light of the television flicker above my blanket. My eyes can’t handle the light.

Flicker. Flicker. If I close my eyes, maybe I will wake up to realize this was all a dream. All of it. Please tell me this is just a dream.


  1. So many thoughts running through my head as I read this but words just can't express it. My heart is breaking reading this I feel so very bad for you, I wish so much that you didn't have to go through this, and that since u are I could be there with you, holding your hand, giving you a hug, not that it would make the pain better, but so that you didn't have to experience this alone. Please, seriously please, call me at any hour, again it will not make the pain better, but I know for me sometimes when I am feeling similar and all alone, I think it would just make it more manageable to hear someones voice, to know they are there for me, to not be competely alone with my thoughts and pain.
    Even writing this, your strength and courage are so very evident, for as many times as I have felt like this I don't have the audacity (it that the right world lol) to put it in writing
    Praying for you always

  2. I think you did something that all who live with chronic illness need to start doing. Telling the truth and I think you should be proud of yourself.

    We live in a world of pain, exhuastion, devastation, loss, grief, aloneness, and on and on, and yet, we are somehow expected to always be postive, happy, hopeful. That is not reality, nor is it truth.

    We not only do ourselves a dis-service but we also hinder understanding in those who do not live our lives. By being quiet, or invisible, they are able to move on with their lives, unscathed by the challenges of ours.

    I think we need to stand up and speak out more often than we do, so answers can finally be demanded - on our behalf - to finding causual links, management tools, cures and whatnot as well as the building of support systems to ungird us during that moments that take away our breathe away as we falter under another assault of incredible pain and exhaustion.

    I'm proud of you for telling it like it really is. I want you to know you are not alone in your feelings, your pain, nor your struggles.

    Hugs and prayers being sent your way...

  3. Ang- Thank you so much, that means so much to me. I hope you know the same goes for you-you can call me at any hour, I am always here for you. You are a beautiful soul and I am so lucky to have you as a friend

    Dominique- wow, thank you! This really does make me feel better. I was honestly going to take this down, I felt bad for not being positive. But thank you so much..its rare that someone makes you feel like it's ok to be you, even if you is someone who is not positive for a day. Thank you very much, I am sending many hugs and prayers your way also

  4. Hi Laura!! I found your blog through your awesome Youtbe channel! Your videos and blog have helped me more than you can know, and I'm sure it is helping SO many more out there! Thank you for being real in this post. My prayers are with you on this very long and hard journey. <3

    God bless,
    Ashleigh (a fellow Potsie)

  5. Thank you so much, Ashleigh! That message means so much to be. I see you have a blog too, I'll be sure to check it out! Many thoughts and well wishes to you <3

  6. I found you on blogger as well as you tube : )
    Hope to be in contact a tad more frequently!

    Take care

  7. I know how you feel. I feel this way often after 15 years of illness. You are not alone since you reached out with this.


  8. i found this post through google, and i had to post a reply:

    '5:30 am. Infomercials and silence. Does anyone out there feel this way? I pace around and try to picture who else might be feeling this way right now. I say a prayer for them as I hold my hand to my chest “please release their pain”. I send the thoughts out there, hoping that whatever warrior is awake with me at this time, feeling this pain, may find some relief. I am with you, whoever you are. You don’t know me but I’m with you and I’m thinking of you. Are you thinking of me? Together we are not alone. I wish I could reach out and touch you. I wish I could wrap my arms around you and tell you I literally feel your pain.'

    i feel you so much, and i understand. my thoughts go out to you, from one heart and experience-acquainted stranger to another.

  9. this is the one I came searching for. the one I want to share with her. do you know any more Blogs I can share Laura? ones that are spoken from someones soul that convey the secret suffering and secret world...

  10. I know this is an old post, but I stumbled across it and just wanted to tell you that this is exactly how I feel so much of the time in my illness. Thank you for the words I cannot speak and God bless you today.