Tuesday, May 28, 2013

I'm Going To Be Okay, Right?

As I checked times and bus information last night the nerves began to jitter. I will have to be out of my house at 6:30 am tomorrow morning just to make it on time to the first day of the book party I have waited all year for: BookExpo America. To a Nicole of another time, that was nothing, these days it is a daunting task. It is not the waking that is the issue, of course (too many times I am still wide awake at that time with no sleep in sight), it is instead, waking pain free, symptom free and with the ability to be social that causes problems.

A blog is fun because of its beautiful technological shield of detachment. I can't tell you how many times I sat before my keyboard, in pain, grimacing, running away to the bathroom mid-sentence or, stopping completely to lay down because the room starting spinning. The words I type never reveal my secrets. Not unless I tell them to. I edit out the ugly, to present my happy face. There was a time when I was strong enough to do that in real life too. I'd go to work, smiling, sincerely happy to be there, but in pain all the same. I'd fight the pain, squash it down and present a figure pleasing to the public.

I miss that power. Even with full understanding that habit is partially to blame for my current weaknesses. I miss the hide-able symptoms. Though my chronic conditions are both in the  family of "you don't look like you're sick" diseases, my face, or more specifically, my eyes have begun to betray me. I suppose the smile I present seems ingenuine these days, because when I offer it up with my super shield, "I'm okay," too many people look at me and say, knowingly, "No, you're not."

So what I am wishing for is a miracle. I am wishing for the next four days to be good days. I am wishing for symptom-free hours so I can talk to new people introducing myself, without having to introduce my chronic diseases as well. Is it possible? I don't know, but I'd like to hope so. 


  1. I hope you are able to have some of those symptom-free days so that you can be yourself and are given the freedom to introduce your chronic diseases on your terms.

  2. Thank you so much, Tammy! So far things are going wonderfully!!!

  3. When I read the things you wrote in "I'm okay" I felt like you were speaking for me, as well. It brought tears to my eyes to realize I was not the only o one to struggle this way, though I so wish you didn't have to. I know you had a marvelous time; I also know (I think) that you will pay the price for these dsys in the days to come. Thank you for your honesty as well as your optimism!