Honor

I was going to write about caregivers and privilege. I probably will since I actually have more class privilege than my caregiver, and this is creating an interesting (and positive) dynamic. Now that you are enticed for future writing, I want to just share something small. We all know my wheelchair is being difficult. My readers (that’d be you!) helped pay for a repair or I would be starved out already and have given up on being independent. It’s hard to be independent when you can’t pee when YOU want darn it! The chair is broken again, and has been deemed unrepairable. The anticipation of being told yes, I can be evaluated for a new powerchair (not a promise but at least it is a start) has left me looking at some of my freetime, activities I had to give up because of disability.

I never stopped reading the emails from the listserv, but because of a confluence of events my hopes are high. Not so high that disappointment will crush me but high enough that I made it known I am attempting a return. In reply, the question was asked, can I use a manual chair and if so there was one for me to take. I feel honored. I have been silent for two years with this group. My hopes are a bit higher now. Part of why I can maybe play more is the location of events is moving with in a distance that I feel comfortable trying to bus to and from. With a proper chair, there is the option of being able to ride the bus.

Freedom is just out of reach, and it is a tantalizing torment!

Nightmares

I haven’t had nightmares since my father died. I didn’t notice they were gone at first, because I tend to only have nightmares when I am tired or when I am stressed. Yesterday I was tired and stressed. I curled up to sleep, taking the time to play some music for William so he would sleep and allowing Sprite to lay sprawled over my hips, which pins me in that position until she moves. This is comforting to me. I drifted off into the twilight that comes before sleep and felt the slight pang of fear, wondering what my dreams would bring.

I remember most of my dreams in vivid detail, and last night I simply dreamed of Super Heroes without villains. They had nothing to do and it was a strange mix of Batman and Hal Jordan from the DC universe sipping tea and staring at one another. There were no words, but it appears that the heroes who inhabited my dreams, fighting off the dark monsters have won. I think it was pomegranate tea.

I remember the smells, and as I crept through what my brain deemed Wayne Manor I found only happy things. It was strange, and when I woke, after a 12 hour dead to the world sleep my first thought was, “Huh… I wonder what that was about.” What does it mean when your heroes run out of villains?

After some rumination I decided my brain is well aware of my ability to fend for myself. The one threat that I could not cope with due to the fear, the flashbacks, and the training from infanthood, is gone. My brain embraced this. One of the truest tests of this is finding silence, nothing but happiness even with the Batman in my brain.

Yesterday I ran into people from the last four years, and I found myself frustrated by the repercussions of those roommates. The credit being taken for my work had an effect, and left me aching a bit. The happiness however, at the true friends that I still have was overreaching.

I went to an SCA event for the College of Blaiddwyn, and I pillaged. My medieval persona (who I dress up as) is a norse female who happens to love Pillaging. I start with a fellow viking, a specific individual and then pillage the rest in my own shallow representation of history. I told stories as well in a competition. It was beautiful, it was fun, and I came home with a sense of satisfaction that I only obtain in the SCA. I missed it.

I will upload videos of my stories and some pictures for you all to check out soon. You can appreciate the awesomeness of my hobby horse on the scooter, I named him Wilbur. I found bits of myself i thought were gone forever. Perhaps it was this wholeness that allowed Batman to take his tea. I wonder if he uses cream and sugar.

With fulfillment comes peace. I forgot who said that. Perhaps it was my Sensei, but, I was fulfilled in a thousand ways with in the last few weeks. A lot of that fulfillment is from writing this blog. Though I may become a more sporadic poster, I am alive.

I look forward to telling you of my adventures with the two young women who are marrying one another, with in the SCA, and as I begin to persue the only job I really know how to do in a classic profession (Public Speaking). I specify in a classic profession as I can do many things, and always have layered my life with the things that please me.

Now for the first time in my life all I choose to do is for myself, or my person. For the first time in my life it is mine and mine alone. Even with a commitment to share my life with people I love, it is my choice. When I started this blog a month and a half ago it was at the start of this adventure. It has just begun but in that short time I have come so far, and i am bringing you all with me.

I can’t do this alone, yet, it is for me that I act. I haven’t felt such power since I started dancing. Dance, sing, and find what gives you this strong sense of peace and joy. Change what needs to be changed for the better, and love yourself. A lot of the private correspondence from this blog comes from people in need of love. The best person to find that love with is yourself. I know it is a cliche, yet it is cliched because it is true.

I also offer you something that my neighbor and Sensei taught me. It comes from the Buddhist tradition. He said, “The strongest Love is Wishing love.” What is wishing love? “Wishing love is the love in your heart that comes with each breath. The joy you feel for life, and the love for anyone. I feel wishing love for you. I feel wishing love for my wife. Wishing love is the love for all people and living things. I even feel wishing love for the people who made me cry.” Why? Why love? “Love is powerful, Little Lotus. Love can help you survive anything. When you hurt in here.” His hand on my heart,”Remember that I love you.” He kissed my forehead and sent me home. I wondered then if I could feel wishing love.

I feel wishing love. Remember, when you are afraid, I love you. When you are alone, I love you. I love everyone in this world. I loved even my father with Wishing Love. I will never forget the pain, but I will also never forget the first moment of love. I will never forget the strange sensation in my heart. It felt as if I could do anything. It still does and I can. So can you.

Wishing Love-
I will cry for you
I will live for you
I will laugh with you
I will love you.
I wish you love
I give you love
Wishing Love
Potent Love.
I wish you life.
I wish you joy.
I wish you mercy.
I wish you peace.
I wish you guidance.
May you find those who can lead you in the path of life, until you can lead another.

Gift Box

I changed my name a few years ago, a court gag order protecting me from my father. For several years before this I used the name Kateryna Fury on anything not legal. I don’t answer to the old name, and flinch when someone uses it, even to call another. The name is perfectly reasonable, a good Jewish name. I am not Jewish, but my father might have been. As with many things he told us, there is no evidence, no proof and usually proof to the contrary.

I found my name in the grocery store. I am not joking, it was a gift. The gift box came wrapped in the form of a wizened old woman. She looked like something out of a science fiction book, the wise old leader, the person put in place to lead the hero. She had a soft voice, not craggy but gentle and looked at me her voice too held an accent. I believe she was born in India. “You are Kateryna (middle name) Fury.” I was quietly confused. She then walked back behind the tuna fish can display. I had no idea who she was, and when I tried to catch up, got way laid by a crowd of people deciding to railroad and push around the young woman with a walker, after all, pushing her is a convenience her humanity is not a necessity to them.

I entered research mode, looking up each facet of my name. I had gone my variations on Kat for years, I knew that was part of my name. One of my ex boyfriends, before he landed himself in jail for trying to rape me, kill me and steal my soul, had declared too that I was a Kat. There was something pleasing about this, as I never really wanted to be human as a child. I wanted to be one of my cat’s kittens.

I spent most of my childhood refusing my given name as well. Usually this was strongest during the times of parental betrayal. It took me years to find the granny gift box. She merely identified what I was hunting for. My SCA name is Kata Hrafnsdottir, another name with another meaning that speaks to me. Kata is related to Kateryna grammatically though is older and is Old Norse, the text of course translated for the English Speaker’s benefit. In the philological history of the words, there is a root and universal definition. Hrafn is raven, a reference to one of my dieties, and dottir means simply, daughter. I kept the definition that was most dear, it is my universal theme and it is a part of me.

Many people protest the idea of a name change. My legal excuse was safety, but a part of my identity was wrapped up in the quest for the name I could answer to. Many people claim a name does not matter, yet, if you name your boy child Sue, such as in the Johnny Cash song, he might be teased. Some names are cruel. My nephew Red is going to loathe the color red. People decided upon his birth he would like this color. He is overloaded with bright red toys, clothes, and already likes to go by something else. His middle name is Storm, but, no one thinks to buy him any Xmen toys. He has decided to be Bob this week.

So, here is what I found when I opened the gift box of my name.

Kateryna- Pure. Kateryna is Ukrainian and Russian in origin. It fits a part of my heritage that may not really exist, but the sentiment is beautiful. I am pure. No one had called me that before. This is a name without shame

The middle names, I have multiple, mean individually, Halo or Golden Light, Warrior, The next means Strife, the last means Royalty. One of them comes from my great grandmother, an honor to hold that name. She died when I was small of Alzheimer’s. She was beautiful in her time however, and smart. I am honored to have her name, and it is all that remains of my original.

The last name is a reference to the Erinyes or Dirae, the angry ones. I chose to accept this title for I often see myself as avenging in my actions. I avenge the murdered child in my own heart by living well and fighting for my rights.

Pure golden warrior of royalty and anger. That is what my name means.  The anger aspect does not mean I am full of rage, yelling, or bitter. It is merely an honest reflection of my life. Much of it has been angry, and anger is often seen as power. It was all the power in the world I once knew, and I honour that part of my life too.

Names have meaning, and I treasure mine. The old name was given to someone else, she was named for me and that stands. I will never dishonour that by malinging the name meaning. I am not bound by god however. I am bound by myself to live not just well but with conscious acts of greatness.

Ability and the Computer

My eyes are crapping out. I have a hole in the retina of one eye and neither can focus on anything near or far. I haven’t been able to read paper without great pain, and sometimes not at all, for over a year. Last time I saw an eye doctor she sent me to a specialist who ignored me, hurt me, and told me nothing was wrong and to ignore my degeneration.

The computer is a bastion of information for me. I have not seen the TV in a long time. When I really like a show I will risk the headache from eyestrain. Usually, it isn’t worth it. Even the computer is starting to fail me. Thanks to William Shakespurr, who turned out to be a Special Needs Kitty, I discovered a new command on my keyboard. I am sure everyone else knew about this but, hitting control and moving the mouse scroll button (that wheely thing in the middle) changes the text size in Firefox. Sweet heaven! I can actually SEE what I want to see. Not only does this magnify the text, without the annoying magnifier that Windows has Built In, but it magnifies the images too. Often without over pixelization, unlike the Magnifier.

If only I could do this to my TV. I am wanting to save for a huuuuge HD screen but, that is unreasonable at this time. My Person and I discussed it, yet with the economy he is having trouble finding a second job. My income does ascertain the rent but it is still $20 short. Without his work we do not eat. Without his work we do not have shelter. I hate SSI. They tell me I should be able to live just fine on it, but I do not.

My computer has helped me discover things such as, I should have a regular old wheelchair. Electric in my case is regular and old fashioned. I do not like the way scooters work. They are not really the proper adaptation for me. I may have to wait five years to get a proper wheelchair. The scooter turned out to be a good stepping stone.

I only discovered the notion of wheels on my butt when my friend came to town and brought his recently deceased mother’s manual chair and insisted we use it so that I could keep up. I actually did things four days in a row! Sure, I could not push myself, I tried and dislocated both shoulders. I had to be pushed and hated that, but I loved being conscious of my surroundings.

I even had enough mind power to rebudget my cash so I could buy a sword cane. That wasn’t quite enough to win me over. What happened next was a camping event with the SCA. There was no way up the hill to the camp where my friends were, I had to choose between volunteering at the event and actually seeing people I missed. I had to keep my word, and therefore I was stuck working. It was exhausting and I kept wishing for a way up the hill.

Another visit from a friend and we rented a wheelchair, also manual. I never considered the option of a scooter. This one was less comfortable, broke when too much pressure was put on the handles, because of a lack of a curbcut, but, I ran into that energy thing again.

My doctor looked surprised when I broached the topic. It took me almost another year before I had the guts, but I was dragging and my best memories in recent years consisted of rolling. I no longer shopped in stores that did not offer me an electric scooter, and I was missing out. I never did anything. Part of the challenges that would follow retained that sort of reality for me for a long time but I got my scooter. I was allowed to choose my model, and after a month of research on the computer I chose my Legend XL.

Now I miss it, and the computer helped me discover I am not the only one who has had a defective tool. I am working on finding the courage to ask for legislation mandating a quality level in assistive devices. Most are ugly, and most break fast. They are also over priced. Government regulation could make it where insurance isn’t needed for a simple bath chair. They denied me mine, a friend bought it so I could bathe.

I am free of misery now that my quality of life has increased, yet I am finding the loaner scooter painful. It hurts my body often, and has helped me seet he flaws in my legend. It will always be wanted, and if we can repair it the Legend will become a camping Scooter once I get my regular chair but I cannot handle the jerking of the tiller. Often it is torn out of my hands, or my back hurts from leaning forward to reach the supposedly adjustable tiller. It isn’t without great force applied. I do not have great force. The loaner does the jerking thing too, nearly breaking my thumb once. It also doesn’t handle little things like pebbles or cracks in the sidewalk well at all. The seat is the one off of my own scooter, required medically to be transferred. The little loaner scooter also fails to start on cold mornings. I miss my early morning events. I miss doing things because Loaner doesn’t hold a good charge. It almost died during a Toastmasters meeting between the lectern and my spot. Five whole feet.

The Wheels on the Butt Go Round and Round…

Today is a busy day, and I hurt enough to make me want to not just crawl under a rock, but to make the rock cry to share my pain. This tactic is not healthy but it is very human, so, I must chant the mantra today that makes me feel the best. “Centered, warmth, healing light, none other shall have to face my plight. I am strong, I am beautiful, I am capable, and my bed waits for me to finish my tasks.” A little long but it helps me get going with a smile. I am eating a delicious breakfast made by my Male Person of Awesomeness, while he showers. The cats are both coming on our adventures today.

This will be our first time taking William Shakespurr out with us. Today’s activities consist of Veterinarian, Bank and the oh so fun Wheelchair Repair Trade off.  The wheels under my butt don’t want to go round and round. Since the first day I got my scooter things have been falling off. Getting it out the door to the house the first time I clipped the wall and lost a chunk of the plastic frame. The second time it was better but I clipped a rock at an SCA event (pebble sized) and lost a bit more. A rattle started a bit later and here we are Six Months into ownership of my own Personal Freedom Mobile, and it is broken.

Man of Awesome loaded it into the van and bumped an empty cardboard box, and the box won. The lights died and now half the time it won’t move. The scooter seems to be defective! What a concept right? It has had power issues the entire time I have dealt with it, but, I had no way of knowing it wasn;’t normal to have it whine, vibrate, jerk about, and rattle. The death rattle grew worse after it stalled out in the new apartment. I hit the wall goooood, and broke the plastic frame, and the entire system died for eight hours. I used the wall as a pillow, since my bed wasn’t home yet and everything else wasn;t here yet. I was the first piece of decoration in our apartment, a wall fixture I might add.

All comedy aside, this experience gave me a new light on the scooter. While it sucks horrible in many ways, those ways are made up for by the fact that I can race someone to the car, and WIN. First time in my life. I don’t have to try and brace my bosom so that they don’t smack me in the face, I don’t have to worry about a dislocated knee, I can zip right out there and not even break a sweat. I also have the freedom of leaving the house by myself for the first time in years. I don’t have to hide in my room if I want privacy and solitude, I merely have to get rolling.

The Maiden of ButtWheel Repair has warned that I might not be able to get this particular chair back, and that I might want to look at other designs. What I truly want is just a wheelchair shaped item, no long nose, just a nice, cushy chair. I would need to add on a few particulars, like a basket for the cat to sit in, and my sunshade, but, after that? I could maybe make it around some of the walls in the apartment, or maybe squish into that store that is barely inaccessible. Scooters add to the inaccessibility issue facing stores and their handicapped customers, though they are great for some people.

I already miss my wheels…

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