If only it were a choice

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back.

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back. This picture was taken in May.

Soon, I will write about my trip. Soon, I will share pictures of my trip. But today, today I am sick. Today I am in pain. Today I feel awful.  Today, I want to badly to feel normal. More than anything, I crave normal.  More than anything, I crave living a life without pain. Right now? Right now it is 5:54 am. The medication I need to feel human, the medication I need to not feel as much pain, the medication to stop the swelling form my bug bite, the medication I need so I don’t cough when I lay down, that’s across the room. And even though it’s only ten steps away, right now it’s far. It might as well be ten miles. It might as well be forever away. And that’s just the physical side. Emotionally and mentally, the energy is gone too. It’s so much more than physical. It’s so much more than being thirsty. It’s not being lazy – I hate the lukewarm bottle of water beside me. But I’m too sick to get up and get some cold water.

This life isn’t a choice. I can’t count the number of people who have told me how lucky I am. How nice it must be to be able to sit around and do nothing all day. To watch all the Netflix I want. To play all the video games I want. But my life? My life is hardly doing nothing.

I won my battle with social security. Victory number 1. I am fighting for my Medicaid and Food Stamps back, thanks to a screw up I made (I flipped my housing and Medicaid deadlines). My days are spent making phone calls, avoiding phone calls, sending emails, avoiding emails, shuttling to doctors. And trying to actually enjoy life in-between. Doing the things outside my apartment, hell, outside my TOWN that I love doing so badly.  But right now?

I can’t even get up to get my own medication and water. I can’t get up because it hurts too much. If I move ever so slightly, oh, holy ow.

If only it were a choice. If only I could choose to be happier. If only I could choose for the pain to go away. It would be so much easier, wouldn’t it?

But that’s not how my life works.

*insert a witty remark about ableism here*

I was recently told that “My partner’s niece has CP and is in a wheelchair! She doesn’t let it hold her back. I sense that same grit in you.”

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Well then. I guess it’s true, to an extent. I am fiercely stubborn. I am fiercely determined. I don’t let the fact that there is no cure for my disorder mean there is no hope in my life. But the thing is, it isn’t always that simple.

Some days, I’m in the emergency room, like this day back in late May. Other days, I’m in bed in pain. Some days I do incredible things – not despite my disability, but because of it. Because I’m living with it. Because it’s who I am. But it isn’t a choice. I live with it – I move on because I have to. Life can’t stop because I’m disabled. But it doesn’t mean I have to be your inspiration. It doesn’t mean I have grit and determination just because I am disabled. It’s just all a part of who I am.

I kNow a Fighter

Photo on 3-2-15 at 7.58 PM

You held me down, but I got up
Get ready, ’cause I’ve had now
I’ve seen it all, I see it now
I’ve got the eye of the tiger, a fighter,
dancing through the fire
Cause I a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am the champion, and you’re gonna hear me roar.

This year’s campaign with the Children’s Tumor foundation is I Know A Fighter. I don’t know life without NF. I was diagnosed at three years old. I’m turning twenty-eight this summer. I’ve known had to say my disorder from that age. Apparently it’s cute to hear a three year old rattle it off.

I’ve never known life without NF. But perhaps someday I will. Perhaps some day I won’t see my doctors yearly , afraid another tumor has grown. Some things cannot be repaired – my dural ectasia cannot be fixed, my vertebrae cannot regrow.

But it doesn’t mean it’s hopeless. It doesn’t mean things won’t ever change. But until then,  I’m a Fighter. Until then, I fight NF. I fight the internal and external signs. And I keep on living.