Ten years with Still's Disease.
I'm doing both better and worse than I thought I would.
I remember ten years ago wondering what it would be like now...not this, I can tell you that much.
It wasn't the smartest idea to lower prednisone during this anniversary. I was so focused on lowering during the summer, which is hell enough as it is, but my anniversary?! This anniversary?!
Worst. Idea. Ever.
On one hand, thank God I've lasted this long and fought this long and, yeah, kinda done this "well". On the other hand, which hurts like hell, this is "well"? Bummer...
Even though I knew I was about to lose all kinds of things like my dream job, an education, health, and independence, there was still soooooo much I had planned to do...I've done basically none of it. And that hurts the most.
I wish I had known how bad it would get. I wish I had know how little I'd have energy to do. I mean I have time. I have nothing but time. But what is time if you physically can't do a stupid thing with it or during it?! It's a curse. A curse that mocks you every day.
You wake up like healthy people. You get dressed like healthy people, kind of. You are a living, breathing thing like healthy people, again, kind of. You pass through time or time passes through you like every one else, and yet, you can't do anything with it. Not a stupid thing.
All these hours, to do nothing but think, and think and think and think....and plan all the things you may never get to do.
And the worse your life gets, the more everything hurts like hell--in a way it never did before.
I am so aware. So horribly aware. Sentient, if you will. And it sucks. I now not only notice and feel my pain, but I've been educated toward empathy enough that I feel everyone else's. My heart can be so big it hurts like hell.
It doesn't work that way when you're healthy. Not at all. You think it does, but it doesn't. Trust me. You feel you. You notice you. There is really only you.
But not when you're sick. I know that doesn't sound right. Typing it doesn't even really sound right, and yet I know it's true. Just another one of God's and life's paradoxes. You know, the ones you have to learn experientially. It's all just so...so....
I've been beyond emotional lately. Ten years with an auto immune diseases at a young age while lowering prednisone will do that to you.
I've been stuck in the negatives, the black, the yuck, the dark. All I can feel is the bad. I try to focus my mind on the good, the white, the light, but it's like my heart couldn't care less.
It is feeling what it wants to feel, and it wants to wallow in the loss.
I keep begging my mind to find its way to my heart, but it's like it refuses. Like I'm supposed to be stuck here for a while, to get all the crap feelings out, and only then will logic and truth find its way down (which I've written about on here and hate that it's me having to live it. It's so much easier to write about it. But if you were wondering, yes I live what I write and it's annoying to me too). It's also what Anne Lamott calls an ascent of sorts...
I know, in my head, and somewhere deep in my heart, that I am better off with Still's Disease. I know being diagnosed 10 years ago was the best thing God could have done for me. Still is. But getting my sticky, selfish, whiny emotions to agree!? Nope. Not during these two awfully emotional months.
I had thought my dark months, October and November, were gone. I thought I beat them last year when I actually celebrated, yes celebrated, my 9 years anniversary...but no. Wishful thinking.
These months will probably always have a hold on me, but....
Well, at the very least, at least they make me feel all this junk which I normally burry and ignore and distract myself from. I suppose they are my purging months. I get two months to get all the gunk, that I've been hiding from for the past 10 months, out!
Yes, logic, keep coming....
But I feel bad--
Whoops!
I feel bad because there are a number of people that don't know these are my dark months...
If I could drive away and disappear and live in a forest in a tent near a mountain with no one else but God to go through this with, I would....
Instead it's sleepless nights in my room alone, feeling far from God like one does in the dark nights of the soul, trying to hide from the emotions, and everyone and everything, trying to fill it with logic and truth, trying not to let these walls close in, trying not to let this room feel like a prison...trying not to ignore the ones I love because seriously my heart hurts like hell...
[ INTERVENTION : action taken to improve a situation ]
And the "hate what I've become" line...well, I couldn't be more afraid of the person I was becoming before God gave me Still's Disease. Seriously. I hate looking back at the path I was on, at how selfish I was...God stepped in JUST in time. He saved me from myself. And taught me how to at least try to get "over me".
I can't remember who said it first, but this phrase has been in my head trying to find its way into my actions, not well, but trying nonetheless: sometimes being Chrsitian is as simple and complicated as choosing God over self.
And I have, and still am "waiting all this time to be something I can't define".
And on this anniversary, like all the others, but this one especially, I feel like "stomping my feet and clapping my hands and causing a scene" for far too many reasons.
I want to make a scene because this sucks.
I want to make a scene because it sucks yet it's the best thing for me.
I want to make a scene because I've wasted so much time.
I want to make a scene because I still hate how far from God I am, even after 10 years with Still's Disease.
I want to make a scene because I'm scared of my future.
I want to make a scene because even though I hate what I was becoming I still miss my past and the path I was on.
I want to make a scene because often my heart is finally big and soft enough to hurt like hell, but I wouldn't change a thing.
I want to make a scene because everyone always seems to be doing so much better than me.
I want to make a scene because I feel everyone's lives went on without me.
I want to make a scene because I feel stuck.
I want to make a scene because I still need Still's Disease to make me more Christlike.
I want to make a scene because I don't want you to need something like Still's Disease to "wake you up" from your selfishness like I did/do.
I want to make a scene simply because I want someone, anyone, to finally notice me and my plight and BE HERE for me.
I want to make a scene because 10 years later is no where near what I thought it would be.
I want to make a scene because I'm still selfish enough to wish 10 years later would be better than this.
I want to make a scene because I can't be content with ALL that God has given me at ALL times...
*Now I know why it's taken me ten years to post these lyrics...amazing...
[ LULLABY : a quiet, gentle song sung to send a child to sleep ]
"Happy" 10 Year Anniversary....
God please keep helping me.
Please keep formatting my life Your way.
Please keep being my lullaby.
Especially through the next 10 years.
