When I break things in I really break them!

I am learning about my limitations this week. Tomorrow the repair man comes for my chair again. Before you panic I will relay what I was told on the phone by the company. This is normal! The chair comes to the company prebuilt, and this means any fiddly bits that are loose won’t get found out until I get it. They do check the chairs but heavy use vs a test drive means that this is normal.

My poor chair… it has scraped up paint from my barely fitting in my door way, the seat belt fell off, the headrest lost it’s ability stay up, and the chair keeps getting stuck randomly and spins it’s wheels without moving. All of this is the result of my going out and down the road. I would go on side walk but the side walks here don’t all have curb cuts! My next project. I am relieved though, that this is normal. I wondered if I was somehow being too hard on this chair when I am doing my best to treat her like she’s a spun glass ornament. Fragile, in need of preservation.

I mentioned my care routine for the chair to the guy on the phone (I forgot his name) and he was impressed. Apparently most people don’t check their chair for any oddities every day, they don’t try to avoid walls (I disbelieve this one) and not everyone charges their chair nightly. I do. This chair is my ticket out of here. Here being right at my computer desk praying that I don’t have to access the HDD where it will skip. I’ve found I cannot watch movies with Media player but I can with Divx for example.

When my chair refuses to go, I get scared. I start imagining horrible things, and to be honest I have yet to shake off the feeling that the front door is too much to pass. I hear Gandalf the Grey in my head. “YOU SHALL NOT PASS.” Each glance at the door, there is the whisper. I may never leave if this chair breaks. I consider this a side effect of disability and likely this is linked to my PTSD and the recent abuses.

I will pass the door, I am going outside at least once a day. Plus I need an excuse to wear a fantastic hat! If anything I am rebelling against my own fears each time I go out. This isn’t a bad thing but it can be a bigger challenge than I am prepared for. I almost went out yesterday for a walk but I was too afraid. So I sat in my yard and stared up at the sky, and I wished for a butterfly to take my wish to the stars.

No butterflies but the moon rose in the afternoon and I felt peace again. I haven’t seen the moon in a long time, and I have missed her. I know as the sun grows hotter I will spend less time outside in the day and will sit in my yard at night with a cup of tea studying the stars. The divinity of the sky has always felt peaceful to me.

I worry that tomorrow the repair man will somehow deem me unworthy of my chair. Logically, this is not how this will go but I have a lot of unfounded fear. The recent experience of no pain meds has also left me with a shaky sensation in my emotional heart. My physical heart feels fine but my emotional heart is tempted by fear.

I know a life time of fear and I have either overcome or accepted the things that scared me as a child, some I am working on still but this new fear has the potential to cripple me where other things have not. If I let the fear of pain that has seeded itself in me win I won’t move, I won’t breathe deep and I won’t sing. A part of me feels broken, but I know that part of me is merely bruised and that bruise overlays old wounds.

I am breaking in my freedom, and Freedom won’t break on me. I keep telling myself this. Yet when I prepare to go out I have to check over a list of what feels like a thousand things just in case my body breaks down. Epipen, inhaler, cellphone, sunscreen, hat, sunshade, kitty cat, cat food, water for her, drink for me… the list goes on and on and on..

So in the end I am left to see that despite parts being loose or breaking under the strain of normal use I am not broken. I must remind myself that if my chair cannot handle going to places I have to go, then something needs to be fixed and it isn’t my life. I have waited patiently for over five years for freedom. I have fought tooth and nail for freedom. I have split myself into parts to survive being penned up. Now I can fly free, and it is time to take the kid gloves off. I will still care for my chair but my chair must care for me.

I am Kateryna Fury and I have the capacity to overcome great fear. (Green Lantern reference for the non nerdy among you.) It is through my will, my hope, and my dreams that I will over come this fear. Why fear pain? I know pain intimately. The pain that destroys me can only win if I let it. I did not let it, so why let the fear of this pain grasp me? Why fear being stuck inside? I have spent years stuck inside. Is it truly being inside I fear or is it now a fear of what I have forgotten, what I have missed and being lost in the big world? Why fear the risk of the sun or my body failing? Won’t the risk come to me if I try and avoid it?

I think I’ll go for a walk now. I must see the sky and the sun. The fear has been broken.

A Pale Cat and Frustration

Tomorrow I am going to write a letter, that I will deliver in person to my Medicaid coordinator’s boss. He gets a copy too. He has had weeks to respond to my calls. I have left voicemails. He called once, but hasn’t acknowledged since Adult Protective Services told him what was going on. He knows the situation. I am running out of time, to find a place to live.

Too, I am worried for William. I woke up a week ago and he was pale. I’ve never seen a cat that was pale before, but his carrying of the Albinism gene allowed me to see it. His nose was whiter than his fur, which is extremely white. He was sick. His body was cold, and even the pads of his paws had turned white. He let me hold him for a time but I put my hand on his stomach, and it hurt him.

I called the vet but with no money I was denied care for him, and I was left with hoping that he would recover. No suspsense is needed in this blog, he recovered. He ate an entire q-tip and managed to safely pass it. Every day since then I have woken, and immediately checked to see if my cat is pale.

Sprite has been more and more clinging, she cares for me too much at times, and yet there is never enough of it for her. Today she was so funny, that when I lifted her she put her paws out and struck the Superman flying pose. I will have to get a picture of this someday, because it was the most wonderful moment. It brought a laugh back into this apartment.

With all of the tragedy that I have been dealing with there is still hope. Most of what I own is boxed up, only two of my valuable items were lost forever, and although one is the stuffed rabbit that was a family heirloom, I am still glad to just be alive. That’s all I have to cling to right now, my Eviction is emminent, but I am alive.

I have learned that there are still gaping flaws with the foodstamps cards in my area. I cannot change my pin before they mail it, but with all the mail disappearing, I do not want it sent to me. I am not sure how I am to eat, because with my food allergies I cannot just get a food box. That’d be wasteful. I will not waste what could help others when the entire country is facing eviction as well.

This blog post has no happy ending yet but I am working on it. I know my foodstamps will accrue, so that I can stock my kitchen once I find one. I know too once I have a place to land I can resume trying to get the other needs I have met. I haven’t really been lonely. K has helped with that, she’s a vibrant woman and her presence has helped me to fight off the depression that I have been struggling with.

Soon, I will even update my photograph. I am cutting my hair as it is getting caught in my wheelchair and I keep sitting on it, which is painful and dangerous. I am also dying it black. I don’t know if I will look good or not with black hair but, I am looking forward to the change. Yes my red hair is naturally beautiful but, right now I am also not wanting to stand out. I will anyway, I can’t help it. It’s just who I am.

I know one other thing. When I move, I will resume writing my novel. I felt it today, the spark in my mind of creation. It’s still there. Just as the music has returned. Now all I need is to be able to go outside without feeling as if my life is in danger.

What makes the world go round?

I have had time to think, between the cleaning. My apartment, this temporary shelter is now clean. I look at it and if I could just feel safe, I know I could stay. I could live here.

I cannot open my door alone, every white van that drives by, it has me jumping out of my skin. Plus, the rat things that were here could return. I cannot stay.

I have reminisced too, thinking on what I was, what I could be. I keep going back to that fateful day when I became irrevocably disabled, when I couldn’t escape it any longer. Yes, I thought I was able bodied, but it was a lie. I was merely Temporarily Able Bodied.

I’ve played it out in my head, the moments, each heart beat. I remember the lift of the van seat, and tried to see what would happen if I had just flowed with the van. It’s a dramatic opera in my head, like an underwater ballet.

The crash of glass is added in, as I, not yet buckled when the accident hit, go through the window. I die in this scenario, the children too. Nothing is better. It is in a way worse. It is worse because of the potential I would’ve stiffled.

It’s the what if game. What if I had made a different choice? Would I still be pent up? Would I still be burdened by fear? Would i still have met my now Ex?

I don’t know. Too many unknowns leave shadows in the game, it lets my mind run wild. None of the alternative scenarios are good. Most of them end in a gory death. I turn my imagination off and wonder too, the what if’s of the future.

What if they cure my disorders? Will it be an in the womb cure? Eugenics? Do I want them cured? Then I back track into that past of mine again, dodging the shadows of terror, to acknowledge my disabilities have saved me too.

I cannot change the past, and again am reminded, I do not want to. I want to be just me. I like who I am. I like knowing what makes me tick. If I changed the past, I would be someone else, and I do not think I would be happy, if alive.

This too reminds me of the cure, if they were to cure this body, it would take an erasure of my own history, which would again alter me. Without my memories do I lose my essence? Probably.

I am tough, and I can be out and out mean. I have had to let this meanstreak run. Oh, I may make a few barbed jokes here and there, but while cleaning this temporary shelter, while digging my way out with the help of K my new care giver, I have had to be cruel.

I cannot return every single thing he has bought to him, because I do not have room to store it all. I am still astounded at the amount of trash that one person can accumulate. We went into the storage area today, I secretly long to find my missing stuffed rabbit. The only vestage of my childhood. I know she’s gone forever. I know he likely desecrated her.

I am going to do something wicked too. I am going to live. I will find a place that I can go, I will find a place where I can thrive. Today, I renew myself, fertile grounds to grow in. The seeds of who I am are planted, and although I have had many winters in this life, as the world I live in turns to fall, my own heart begins a spring.

I dream of feeling safe. I dream of freedom. I dream of walks on sunny days. I dream of taking the cats out to play. I dream of small children visiting me. I drema too, of the stories I will write. When I am moved, I can return to my novel. I can feel safe enough to let myself play.

Today, I plant the seeds of dreams. I set new goals. They are all short ranged goals, but they are goals. I will survive. I have survived. I am surviving.

My Name:
by Kateryna Fury

My name is not victim.
My name is not survivor.
My name is not Woman.
My name is all these things and more. My name is life.
My name is Joy.
My name is Love.
My name is freedom.
My name is strength.
My name is mine.

You are a Fighter!

I have a list of ailments and challenges, and in one of my conversations someone told me I am a hell of a fighter. I am not. I just have to work to have a life. That is one of the things that got me to take pain medication. I had no quality of life. This is where I get frustrated by things like the Teri Chaivo story, people want to prolong the lives of those with no hope of quality, and that is fine, but, to blatantly torture someone is not, and where is that line? Personally, I am not certain, though I wish it was clearer for me. Do I want to live forever on tubes if I am really dead? Absolutely not. However, what if the doctors are wrong? Does that make me a suicide or forcing someone I love into Murder?

The moral lines are very murky. Morality itself is questionable, as who sets the moral compass for others? Does my doctor share my own Morality? How can I know? Asking is considered politically incorrect. Do I want to know if they do not agree with me? The odds are that they do not. My religion is not up for debate, and neither is theirs, yet, religion is what is often cited as a moral compass.

What does it take to truly be a fighter? I do not think I really am one. I know that I have to army crawl through life, but, doesn’t everyone? How can I say that my multiple disabilities make me a better fighter than someone who I percieve as perfectly healthy. There are hidden disabilities out there, some of which might even be up for debate via personal interpretation. There are people who see me in my wheelchair and do not comprehend me as an intelligent being, and others that presume every disabled person is just a faker.

Yes, I fight daily, but, it is a personal struggle. This doesn’t make me a fighter, it merely makes me human. To be seen as a fighter might be an honor, one I am not sure I want. I just want to be alive. I want a life free of discrimination, and I want to remain who I am. I would not be me, without my challenges, and therefore if I am a fighter, it is merely the nature of the beast.

People often claim to fight diseases, another thing brought to mind whenever someone tells me I am a strong person or a fighter. I have even used the words myself, for other people. I have an aunt who has had Cancer for longer than I have been alive. She endures, she fights, she struggles. She is also gentle and I never see her as the warrior archetype. I see her as the almighty Mother, iconography aside I do not see her as a fighter. Perhaps it is because of my youth. Perhaps it is because she is a private person, hiding her pain most of the time. Does claiming you can fight an incurable disease make you a fighter? Does enduring it give you the title?

Is there a better term? I admit that survivor is appealing, though when you are in the thick of surviving it doesn’t apply. Maybe, I just want to be told “Oh, hey, you are a person.” Maybe I am a fighter, but, I just don’t see it.This doesn’t mean I do not get tired, it doesn’t mean I do not fight for my rights, it merely means, I see myself as a writer, a cat owner, a cat ownee, and even a friend, before I see myself as a fighter.

Are you a fighter? What does it mean to you to be a fighter?

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