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.

Wake me up when September ends

Late June to late July is an emotional clusterfuck.

It’s why I initially scheduled my Aussie trip there so I’d have good memories in the time frame of a hellish month.

But Beth died.
But it’s the one year mark of my father dying.
The two year mark of the back surgery that screwed up my life.
The four year mark of Nick dying.

It’s such a hard month.
It’s such a hard time frame.

Now I have happy and amazing memories from the time frame (which I will blog about and post pictures and stuff about soon, promise!).

But it’s hard.

I’ve cried more recently than I’ve done in the past year. So many tears. So much pain. So much heartache.

So much loss.

Remember, remember, the ninth of… May?

May ninth is kind of a shitty day for me. Four years ago today, I had the first of my back surgeries. One year ago today, I was supposed to graduate.

I didn’t graduate. And my back surgery hurt. Recovery was a bitch. It resulted in a second surgery two years later that I still haven’t fully recovered from.

And not even a year after that second surgery, I withdrew from college. Possibly to never go back. Only a semester and a half away from graduation – I was set to walk in the May ceremony and officially complete my degree in December.

It didn’t happen. And it’s hard. And it sucks. Some day I dream of graduation – some day I dream of going back. But right now, with my mental and physical health, it just isn’t an option.

And it’s just…it’s heartbreaking that one day hold so much for me. I wish I could pretend it doesn’t exist. I wish I could just throw my arms in the air and give up. Because I’m sick of this pain, physical and mental. I’m sick of the way things are.

It’s not what I hoped. What I dreamed. What I wanted. My life is so far away from that so called ideal… and I hate it.