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I think I'm in shock. I feel...frozen, in...dread and fear. It's one thing to play worst case scenario in your head to prepare for any and all situations. It's another to be living that preparedness.
You get very good at that when tragedy strikes out of nowhere, playing worst case scenario, especially at a younger age. It actually becomes quite comforting. At least to me. To know what's the worst thing that could happen and then wait for it, and wake in the morning to see it didn't actually come. At least it used to.
It seems like the storm of worst case scenarios is starting to roll in, and roll in strong.
We are trying to find a contractor to bring my parents and my home up to ADA standards, otherwise known as handicap accessible. All the doors need to be 36" wide instead of 32". The master bath needs to be able to have me wheel in and wheel out in the future. We need a ramp out back. We need a soaker tub for the days I can't shower...
It was one thing to imagine it, play the possible scenario out in my distant subconscious. It's another to be actually planning it and making it happen.
I don't like it, to say the least. It's an extreme lack of fun. Remodeling is supposed to be exciting, and I'm mostly scared. Worried. Sad...
Grief hits you when you least expect it. It sidelines you. At least it usually surprises me.
Celebrity Corey Monteith, that I mentioned below, tragically passed all too soon. Mariano Rivera just pitched in his last All-Star game as the greatest closing pitcher ever and the standing ovation with him alone on the field broke my heart directly into a bunch of sad bleeding pieces. Our dog Tucker is getting very old very quickly... I keep finding myself watching him to make sure he is still breathing--I'm scared; he's my brother. And then, and then literally preparing for my life in a wheelchair...
I just can't.
I don't want to.
To think about any of it.
About the young friends I've tragically lossed, one at a party, one a car accident.
The friend with Lyme Disease.
The friend who got tuberculous while building houses in Mexico with her church her junior year of high school, and how she didn't find out until she needed tested before college.
The sweet and beautiful young girl from Ellen who had cancer and wanted to be a make up artist who just recently passed.
Cleaning up my Grandparents' house knowing they are never coming back. The complete, thick, breathy, lack of them.
And then all the other people out there with Stills Disease. Or any other "invisible" disease. Especially something with as much as a stigma as "just arthritis".
Having so many people look at me and judge me for a million different reasons as all the questions and doubts and fears flood through them when they see me or think about me:
Is it really that bad?
Why did she gain so much weight?
Why doesn't she come to family gatherings?
Why doesn't she call or text or email?
Did she give up?
Couldn't she try harder?
She looks ok, so why isn't she ok?
Isn't it "just" arthritis?
I mean, I'm older than she is! I'm in pain all the time! It can't be worse than mine, can it?
Couldn't she go back to school, even just online?
Can't she work, even a little?
Or volunteer?
Why doesn't she even go to church?
Couldn't she live on her own; does she really need her parents for everything?
Why was she ok the other day and now she can't get out of bed?
Why did she suddenly come home all those years ago when she was doing so well on her own at college?
At least it's not cancer, so she will be ok. It's not that bad, so it's ok that I'm so busy, right? It could be worse, right?
I know their thoughts. I know their thoughts because I can see them on their faces when they scan me from head to toe when they see me. I can feel it radiating off their body language. But mostly, I know they think these things because so do I. The doubts plague me too. Not as much as all of you. But they still mess with me every day. I even see it in my parents eyes and comments. We don't mean to, but we do anyway. And the doubts, yours and mine, just get added to the already heavy list of things weighing on my heart and soul. And tonight, they are spilling over, over onto this page for fear of where they might land if not here.
Reality. At face value?! It really hurts...
Especially tonight.
I really, really, really don't want to end up in a wheelchair before I'm 35. And, here we are planning for that exact scenario. And it sucks.
What do my friends worry about in their late 20's? Not this. Definitely not this.
Reality...tonight I'm just not a fan.
I'm just sad.
Stunned.
Stunned, by life's immediate current state of actuality, into a tearful silence, staring into the darkness, as if that's where my escape is hidden.
As if that's where an alternate universe exists where I never got Stills disease and all is ok. Like one of the possibilities of our lives, like one of those strings of Brian Greene's theory has a version of my life free from all this mess.
Many may call it heaven.
Tonight, tonight I am finding myself longing for it--just a glimpse of it. A peak. For God to lift the veil for just a second. Just to see what she and life are like. To see that some other me is ok. That life is ok. That reality is ok. Somewhere. Even if it's not here.
I just want and need to see that, somewhere, all is not like this. Not right now. To see if there is a me, not lying in bed typing, bleeding, and crying her feelings out, wondering why life gets so sad, so quickly.
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