In the eye of the storm.

I sometimes don’t talk about it, so some people think that I’m okay, or that I’m better. To be honest, I don’t know if I’ll ever know what better feels like. And that scares me. But, at the same time, I am getting used to feeling broken. To feeling like I’m stuck in this hole, and I’ll never get out of it.

People have questions. They’re curious. 

But, explaining it is hard.
Doctors can barely explain, so how can I?
It’s like living in a cloud. Living in pain. 

The other day, for the first time ever, I started blacking out, and had somewhat of a convulsion in the middle. I pushed it to the side, like that was normal- but it’s not. 

And that terrifies me. People either act like I’m perfectly fine, or I’m dying. There’s no in-between to others. I’m in the middle somewhere. I’m not fine, but I’m also not dying. But Dysautonomia, and a heart condition did take away my life.  

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August 2013 // A month before I started experiencing symptoms.

All I want is to go back. Go back to a time when I didn’t know what constant pain felt like. I didn’t know what a life spinning out of control was like. I didn’t know what Dysautonomia, Postural Orthostatic Tachycardia Syndrome, Neurocardiogenic Syncope, Inappropriate Sinus Tachycardia, Atrial Tachycardia, or Supraventricular Tachycardia was. 

Now, I know it all too well. 

All I want is one day. One day where I don’t black out. One day where I’m not dizzy. One day where I am me again. The girl that was oblivious to what her life would be like just a short time later. The girl that had huge dreams, and now all I dream of is one day to feel better- whatever better is. 

To genuinely smile. To truly laugh. To breathe again. To be me. 

 

And I’m runnin’ out of faith
I see the future I picture slowly fade away
And when the tears of pain and heartache
Are pouring down my face
I find my peace in Jesus’ name
In the eye of the storm
You remain in control.
Even though I am frustrated that my life isn’t going the way I dreamed, and my faith is slowly fading, I try my hardest to hold on. To hold on to the hope God provides, that one day, even though this storm is heavy, and killing my spirit, that I’ll find safety upon the shore. 
One day, a cure will be found. And I wait for that day, with God by my side. 
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  • Andrew Budek-Schmeisser

    BN, I really hear you in this post, and I wish there were some way I could take the pain and fatigue away. Let God drop it on me; I’m going nowhere but down, but there are still loads I can and would willingly carry.

    Alas, things don’t work this way.But please do try to hold onto faith and its handmaiden, hope. Not, however, the faith that all will get better, or the hope for a brighter tomorrow that takes you past a hard today.

    I would ask for the faith that there is the opportunity to do something good and right in each moment, even if you’re convinced that no one, not even God, is paying attention.

    And I would ask for the hope that like a pebble tossed into a still pond, your small fragment of positive attitude will reach another shore as a ripple on sloping shingle, and awaken someone whose heart has grown heavy with care.

    Not a message in a bottle, BN – a heartbeat of hope and comfort, sent from you into the darkness like a small and brave comet.

    I’m in your corner, dear brave heart.