Friday, May 9, 2014

Be Ok

"I chain words together to form sentences. I lasso sentences around the moon. You wouldn’t know it by looking at me, but I am sick." -Elaina J. Martin

I've been told that blogging is an effective form of forced accountability. If you have enough random people saying they want to hear what you have to say, eventually you will say something, even if it's just to shut them up and try to get some peace and quiet. I've been told that it's fun. That there's an audience out there for everyone. That there will always be one bored person out there at 3 o'clock in the morning that will be willing to read what you have to say simply because they have nothing better to do. I've been told that you would be surprised just how many people out there are actually willing to read what you have to say.

So this is what I have to say:

I am sick. And it's hard.

It's hard because I look well. I look normal (well, mostly- I do have a tendency to wear funny hats now and again, but that is another matter entirely). I am an educated, outspoken, tall, redheaded, 21-year-old who would only stand out in a crowd if she chose to. The only signs that there is anything wrong with me that can be seen from the outside are the permanent dark circles under my eyes that can only be covered on a good day with tattoo-covering-grade makeup & a good deal of prayer, and the walking, fuzzy, red-vested billboard that follows me around everywhere I go, also known as a service dog. I am not blind. I am not deaf. I am not in a wheelchair. I have all of my extremities in tact. I do not have any major birth defects, nor was I born with any significant mental disabilities. I am not dying any faster than anyone else I know.

I look well because I should be. I look normal because up until a few short years ago, I was. I have what are known as invisible illnesses, and that's hard.

Shall I give you a short list? We'll call it a confession.
Generalized Anxiety Disorder
Panic Disorder
Post Traumatic Stress Disorder (P.T.S.D.)
Narcolepsy with Cataplexy (as opposed to without)

In a few short years I've gone from being considered highly successful for my age, to considering applying for disability. I graduated high school second in my class with only 0.01 GPA points separating me and the girl who was Valedictorian. Between academics, dance, theatre, art, music, etc. I had enough medals around my neck at graduation that I actually called myself a walking windchime in my class speech. The writing portion of my A.C.T. was scored at 99%. I only ever applied to one college, and made it in without batting an eye. My freshman year I received so much scholarship money that the only things I had to pay for were food and books. I loved everything about going to school. I probably could have been a career student if given half the chance, and there isn't a day that goes by that I don't miss it with everything I have in me.

That happy, little, college freshman couldn't have known it, but soon even standing would become a struggle. She had no idea what awaited her- the night terrors, the inexplicable panic attacks that came from nowhere, the inability to stay awake even while standing, the gaps in her memory that would start to appear, having a pill box that could rival any old lady and instantly doubled as a maraca, having a teacher try to bar her from the classroom because she showed up with a service dog, failing a class for the first time, having to take out a student loan even though she worked so hard for so long to not have need to because she lost her scholarships from an inability to maintain the requirements, being dismissed from her first opera that she worked as the assistant stage manager, costumed, and had a named role in because she was deemed a safety hazard, getting dumped by her boyfriend unexpectedly because her health became too much of a burden for him to deal with, having to drop out of school completely and move back in with her parents, then her grandparents, and realizing that she could count on one hand the number of friends she knew before her illness that had actually made an effort to be there for her and maintain a friendship, lying in bed crying on Easter Sunday because she couldn't stay awake long enough to go to church. A

No, she never expected any of that. The world was bright, and fresh, and new, and despite her past, full of hope and excitement.

I never expected to be where I am today. I never wanted any of this to happen. There are days that I would be willing to give up everything that I am just to be normal and be able to live a normal life. Every moment of every day has become a struggle to do even the most basic tasks where as before I could do so much more with the greatest of ease.

But you know what?

It's going to be ok.

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