One day...

One day I'm going to stop pretending that I'm okay with not being able to go out and do what I want to do. One day I promise I won't smile through tears and joke around that my heart doesn't ache every time I see someone doing something I can't.

One day I'll be okay with my disability. 

Today is not that day.

I was going to go to the cvs that's less than a mile away today. I spent today in pain and unable to walk much at all, much less make myself more than cereal. 

Joe is having fun in Canada. Jess is with her husband 3 hours away enjoying a oyster festival. Mom got to travel around with my great aunt, see one of my best friends. 

I struggled to make it outside for a much needed cigarette (I've started smoking again, and I have zero fucks to give about it)

I guess I got to travel to Kentucky to see my grandmother and my dads side of the family. I guess it's not all bad, even though I kept my family from doing awesome things making me feel guilty. I hold people back when I do things with them. They pretend I don't...but the lies hurt worse than the truth. The truth is I'm a burden.

I smile. I pretend. I act excited, but really I'm just jealous. My pride is wounded. And my face is rubbed more and more to the fact I'm unable to do the things I used to. I joke to cover up my pain.

It's okay though. One day I'll travel again. I'll have a garden. I'll have animals. I'll teach. One way or another I will work through this.

One day I'll be okay. It's just not going to be today.

Weird fears: microagression/racism

I hear it all the time. The word I don't fully understand, and I don't think I ever truly will. Even as a part of certain minority and discriminated groups, I still don't understand.

Microagression

What is it, really? Sometimes when people scream "Microagression" it seems to me as someone bridging their own ignorance through asking questions instead of making assumptions, or living in a world of tongue biting curiosity. It's not aggression, but a true acknowledgement of their own ignorance.

What makes me question this: three things.

The man who raped me was Asian. (actually he was half Korean, half white, but his features were defiantly Asian.) Ever since him, I have had flashbacks whenever I imagine becoming intimate with an Asian. Even seeing a half naked Asain man is enough to pull a knot into my stomach and tears from my eyes. It's disheartening. It makes me disgusted with myself. I judge people based on their appearance, based on their race, based on something beyond their control. It makes me feel guilty. I have many friends who are Asian, some of whom I could see me having a meaningful relationship with. I just couldn't get beyond my own issues, and honestly, I don't even want to try reopening old wounds. 

I'm bi. And even Asian women will set me off. There was one Asian girl I had a big crush on. I just knew I couldn't be with her because of this guttural reaction. Another one of my guy friends who is half Asian had a crush on me. I knew it. I admired him, but I just couldn't get past the feelings inside.

Is that microagression? is that overt racism? I don't know. I just know it's not going to go away without a lot of time, effort, and tears.

I love afros, kinky-curls, cornrows, weaves, and all aspects of Black hair care. I think it is the most cool and unique thing on the planet. I wish I had the ability to grow an afro, or just crop it short and leave that beautiful black silhouette against my skin. Even better, I would grow dreadlocks without being seen as a dirty hippy. I have so many questions about black hair care. I just was not raised in a culture where black haircare was mentioned. (Exept in Orchestra where I learned from my black classmates and teacher that a Pocahontas weave takes two packs of hair) I keep my mouth shut even when I have burning questions. I want to learn how to do such beautiful braids. But I keep my hands to myself. I don't want to offend anyone with my obsession. (Black skincare, tattoos, and sun care are also things that burn inside me)

I love cultural clothes. Saris, Kimonos, Hanbaks, African tribal patterns. Oh my gosh, I love it all! I wish I could be half as beautiful as my Pakistani friend who wears her Saris so often. The looks like a fucking princess! The bright colors and flowing fabrics make my mouth water. Seeing a woman in a kimono, loving how the obi both matches and is set apart by the fabric of the yukata, wondering how they walk in such strange shoes, and wishing for that experience makes my heart ache. Have you seen a proud black woman with her geometric patterned dress and her hair piled high on her head wrapped in a scarf that is so unique and beautiful. Whenever I see a hijjab on the street I want to stare so badly. It's so beautiful. And it's not just limited to people of color either. The Mennonite ladies in my community always wear the most beautiful dresses. Knowing that they are handmade, and seeing the most subtle beautiful patterns as well as the different style of head coverings makes me ache with desire. But I hold back. Because I don't want to insult the people whose culture it represents.

Yeah. That's what I got. I'm just a pathetic little white girl who wants to question, and immerse myself in a culture without insulting anyone. I don't know if it's considered microagressions or racism, or what, but I'm just putting my fears out there as a method of coming to terms with them. As a method of self discovery.

I don't know, but all this thinking has exhausted me.

Strawberries and clover

Green always brings me memories.

I had a picnic outside in the grass today. I layed out an itchy grey wool blanket that smelled of the cedar chest I keep it in. I lay on my blanket and looked out at the abundance of life teaming in the grass. The shade was cool and I lay there with my memories.

A cigarette burned in my hand that day years ago, but the red smoking cherry was nothing next to the anger in my chest and the tears that clawed down my face.

I just wanted a happy marriage where my husband's love made him itch to touch me. I wanted to be beautiful to him, strong for him. I wanted a life of love and adventure. I wanted a life of wild sex and dances under the stars. I wanted 3 am wine and shared secrets under a blanket near a fire. I wanted someone who held me when I cried and laughed at me when I was silly. I wanted someone who would let me do the same. I wanted the other half of myself.

He took that from me.

No, that's not right, because we never had it. I thought we did, and I probably would have continued in my ignorance till death. 

"I have an addiction to pornography." He told me. He was wrong. His addiction was not to porn, it was to himself. He was addicted to his own wants and desires. He wanted sex, he'd give it to himself. It didn't matter that I begged, bargained and pleaded for it. He wanted escape. He left me to my own devices while he threw himself into his games. He never took me with him. He wanted food. He would make it, and not care that I was hungry. He was addicted to himself.

And I felt betrayed. My knees against the steering wheel I stared out into the grass from the parking lot. A cool breeze came in from the open car windows pulling the smoke from its lazy swirls and lines into nothingness.

My cigarette was half done, and I felt the nicotine dancing in my blood, taking me away from my pain. I imagined that if I had wings I could fly away. My stomach felt heavy, by my back felt light and alive. Like wings were about to break from their hiding place under my skin. I took another drag and wiped away the tears. I imagined thick feathers and strong muscles exploding from my back in a spray of blood. The skin itched there as I dreamed of escape.

It's been years since I was in that parking lot overlooking that field. It's been years since I've seen my ex husband. Still, I worry about him. Does he eat right? Has he found love? Has he found a job he likes? Is he happy with his life? It kills me that I don't know these things. 

I sit in the grass on my grey blanket now and I finally can admit to myself: I'm afraid. I'm afraid to trust people. Im afraid of letting myself be vulnerable. I'm afraid that people will not be there when I need them most.

Wheeling my way downtown...

Well...the wheelchair wasn't a total disaster in that I didn't die...but I almost did 3 times. It turns out the wheelchair tires are not, in fact, made for outdoor use. Traction on them was impossible...so much so I almost skidded into a busy street 3 times. 1 time on a non busy street. Although, really the death part of it doesn't phase me. (Yey disaccociation!!)  it was incredibly frustrating because the wheelchair would not do what I wanted it to. I have to borrow another wheelchair with proper wheels, buy a wheelchair with the proper wheels, or reevaluate how badly I want my independence.

But I got this...

I think...

God, I hope...

My arms are screaming, and I'm sweating. My chest feels light like I just ran 1/2 a mile (which for me is a big deal)I hurt to the point of tears and the tremors are bad. But I did it. I made it almost all by myself. This one guy insisted on helping me after seeing the danger I was in so I let him push me a foot over a ridge. But other than that I did 4 blocks on my own. One of those blocks was uphill.

I feel proud of myself for that at least.

Things I learned:

1)my right arm is significantly weaker than my left arm (go tremors keeping my left arm in shape)

2) wheelchairs are fucking heavy and I'm weak as hell. 

3) we have some amazingly nice people in this town...like woah!

4) I need gloves for wheeling around. My hands are fucking gross!

5) wheelchair users are fucking badasses! I'm not discoraged from using one part time! Just need to figure out some things first.

In success...no one can hear you scream...

You see what I did there...with the title? 

Ahahaha...*sigh*

Today I've been in pain brain and body are screaming at me and I just want to cry. I don't know how to live with the pain and exhaustion...it makes me sick to my stomach.

I didn't get to wheel around the neighborhood.

But I've read lot. 3-4 days I've read 600 pages of young adult fiction. It's about half of what I was capable of in my prime. I still call it a success.

Zen and the art of wheelchair maintenance

Well...this whole time I've been searching for a wheelchair to test out the whole "should I get a wheelchair" thing there's been one in my basement. It's the landlords and from the 50s. I didn't even register it because it's a transport wheelchair with a full back. Something like this:

But I went downstairs (which I don't like doing because the walls aren't very supportive on my climb down) to the basement to see if there was some way to modify it till I could get a real wheelchair. Joe is leaving for 10 days starting this week and I was hoping to test out my independence while he was gone.

I'm glad I did. Turns out that high back was just a add on thing. I took it off in a matter of seconds! It was dirty as sin, old as my parents, but I had joe take it upstairs so I could clean it.

My god, was it dirty...

But after peeling off spider egg sacks and 30-40 years of grunge, I ended up with a solid, wheelchair that works pretty well.

It's not perfect. The leg rests are clunky and won't lock in place. The tires are too smooth to have much traction...but I have a wheelchair to test if buying a new one is worth time. It's also 50 some odd lbs. To give you an idea, even the clunkers on the market now are 30 lbs. the one I want is 18-15 lbs. my arms are going to get so big!

I'm going to be testing it out it big girl world tomorrow. The halls in my house, as well as the doorways are incredibly narrow, so my indoor test run went poorly. That's fine. I don't want the wheelchair for around the house. It's easier just to hold onto walls and fumble around. Plus I like the fact that I can walk unaided (most of the time) in our house.  It's when in outside and I need human support or my walker, and I can feel my legs giving out on me...I want the wheelchair for other things...for freedom outside my house...

So that's exciting.

In other news, my hair has pissed me off enough for me to change it...that was a lie. The truth of the matter is, I sat down to work on feeling emotions, which I've had a hard time doing lately. It worked. It sucked. I remember why I don't like having emotions. All I have are bad ones. The ones that don't help me. Well in response to those bad feelings, I feel the need to overcompensate with a badass change to my hair....and happy colors...So I'm going to do something happy and badass. I don't know what yet, but it's going to happen.

I feel like Holden Caufield from Catcher in Rye whenever I have feelings, all dark, stormy, chaotic, and lonely. I don't like them. We'll see what therapy has in store for me Tuesday. Until then, I've cut the floodgates to those icky things. I've had enough of their hurty hurtness for a while.

So...this wheelchair thing...

I'm getting a little excited over the potential the wheelchair has to expand my freedoms. I'll still have to deal with all the stuff I normally deal with, without freaking out about falling or going into a seizure. I'll be more able to get out of the house, and exercise. My legs can't hold me, but my arms (although still weak and occasionally spazzy) are much more capable. I won't be as afraid to take public transport on my own (and the local transportation department is andicap accessible.) it's really the first hope of freedom and independence I've felt since this fiasco began. Even Jess said she would run with me...I.e. I'll "run" and she'll RUN...one day, even with my misbehaving legs, I might be able to do marithons...I mean if I get over my fatigue.

And think about the job opportunities...as soon as I get the seizures under control, I can get a part time job! And maybe go back to school!

And I've looked into wheelchair homes and homesteading. It's totally something doable!!

Plus...I'm thinking cosplays! At first I thought Oracle. And that was cute, but drab...then I thought a professor x cross-play (I do like being bald) then I became brilliant!

Dr. Fuckin Malcom from Jurrassic Park sitting backwards in the jeep as he runs from the T. rex! Holy shit! How awesome would that be?!?! (And a great place to store purchased merch and booze) plus...leather jacket and sunglasses? Sexy!

Anyway, mom is finding me a wheelchair to test my theory out on...if it works I'll be getting my own for Christmas, asking for donations in lue of Christmas presents.

I'll still be standing the same amount of time as I usually do. I'll just be more active and able to get out of the house! I'm way too excited about a wheelchair. I always thought death before disability, but I can actually live a life worth living if all goes to plan. If ya'll are the praying types...please do so. I want this to be the adaptation that getting me on the road to normalicy.

(Special note: Squee! My aunt Doris is going to be living with my parents now!!!!so excited!!!)