Friday, September 27, 2013

Coward of the County

"Jail Bars Icon" by Antonu - Own work.
Licensed under CC BY-SA 3.0 via
Wikimedia Commons -
Fear used to rule far more of my life than it does now. It came mainly from a person who put the fear of crazy into me when I was six. I've spoken of her before, but I'd like to expand what happened and why I am far less afraid of her insane rages.

My parents divorced when i was four. I have no idea what happened with them, they were both always too bitter to get to any reality of their relationship. I was told there was violence, but I didn't see any. I believe it in that she had violence in all her other relationships.

Now, this confuses me as one would think that a mother's first instinct would be to protect her children, but my older sister and I went to live with dad. I have no memory of ever being hurt by dad. So maybe it was the best option at the time, but it still seems inconsistent with a mother's love.

Dad had a series of babysitters take care of us, I remember a kindly old grandma lady. I am not sure where they came from, but possibly the Mormon Church. We had this one, Ellen, who I didn't like at all, but she did things with my sister like take her to youth groups and the like. Cokie, my sister, liked the attention.

One day, Cokie and I stayed home from school. I was in kindergarten and she was in junior high school. I went over to the little store down the road to buy donuts and when I got back, there was a lady sitting in her car outside. She knocked on the door and took us both to this place called Child Haven for truancy.

After that, somehow we ended up living with Ellen. We saw dad occasionally but I don't remember seeing him often. I went to school with Ellen's son Teddy for the rest of kindergarten, but in first grade they put me on the bus to go to school with the other sight impaired kids.

Ellen's strict ways manifested in cruelty. I suspect the transgressions that got me in trouble came mainly from "being a kid." She turned toys into weapons by "spanking" me with hot wheel track. She regularly beat me while I was eating and had strict toilet rules. To this day, I will cry if I have to poop in a public bathroom. I try and avoid it, both the crying and the pooping, but sometimes ya just gotta go. I do better if I remind myself that I am safe and allowed to do it.

Once while playing a board game with her son Freddy, he and I got into a tussle over a game piece. Freddy bit my finger to get it out of my hand and I cried out. She called us into the living room where she was ironing. I have no idea why either of us would argue in ear shot of her, but once we were standing there, my biggest fear that someone was going to get burned. Ellen had a different idea.

After she knew the story, she decided that I should bite Freddy's finger. I feel such shame that in that moment, I wanted to make him bleed for hurting me. I'm truly sorry, Freddy, wherever you are.

I have no memory of what I had done to get a beating this one afternoon, but as part of the punishment after the beating, Ellen made me stand in the middle of the room. I passed out and came to in a puddle of my own blood. I'd fallen on a drawer knob and cut my chin open. Ellen did take me to the emergency room and I got stitches in my chin. My dad was there, but I don't know if anyone ever told him anything about what was happening. Cokie never told anyone. I think that's sad that neither of us had anyone we could tell.

During a holiday gathering, Ellen took me with her when she needed to go pick something up from a store. Again, I have no memory of what I'd done to set her off. We were in the car when she started by pulling my hair and thrashing me from side to side. Then she wrapped her fat arm around my neck and began to choke me. I wish I knew what made her stop.

She made a second attempt on my life another night, only this time she didn't care there were witnesses. I don't remember which one but one of her sons was pushing me while we were riding in the back of the car. She slammed on the brakes and told me to get out of the car. She told me to walk in front of the car and get in the other side. I told her NO and I turned and ran into the desert. She would have left me there, but Cokie wouldn't let her drive off.

Toward the end, two incidents stand out. First, I went to first grade without wearing underwear. I didn't have any clean in my drawer and I asked her for some but she said I should just stay home instead. No way was I going to be alone with her so I went to school without any. I don't know why I went on the monkey boars. The look on my first grade teacher, she was so frustrated with me.

This time I remember exactly what I did to get a beating. Ellen took us to church every Sunday and I took two pieces of bread from the sacrament tray. She took me into the bathroom, picked me up by my collar and my underwear and threw my head against the sink. I could clearly hear the congregation, so I'm sure they could clearly hear me being abused.

She put me in the car and after services I saw people file past and stare at me. As I sat there with blood dripping down the side of my head, I cried. I'm not sure if they talked to Ellen or if it was her own idea, but not long after, she took me to Child Haven and told them "She is an unmanageable child."

Mom came into the picture and Cokie finally told that Ellen was abusing me. I had to stay at Child Haven while they sorted the custody.

I carried version of Ellen inside my head that kept me fearful for many years. In my late 20s, I found a therapy guy who helped. He suggested I draw a picture of her in order to confront her. This TERRIFIED me. I had no idea how much she scared me until he suggested that.

She would come off the paper and GET me! He suggested I draw a cage around her. I couldn't figure out how to draw the cage, so I drew me some body guards first. Then I drew her, then I drew the cage. From that moment on, the fear I felt decreased by 90 percent. I didn't even need to "confront" her. The act of drawing her out, confronted enough.

I still carry some damage. When I'm feeling low, I hear "unmanageable child" and feel like I'm worthless. I can usually get out of it by checking on the facts.

I try and remember to hold my head up. I am not defined by what was done to me. In a way, Ellen gave me the gift of courage. She taught me that I can be afraid, and still go on and do something. That's why I write this blog. I want to remind others, wherever you come from, whatever you've been through, it doesn't have to be everything about you.

Lets go do something bold.

Tuesday, September 24, 2013

Getting to know you

This is number 4 in a science fiction series I started. Here are the links to the previous ones if you wish to catch up. This is completely made up as I go and started on a suggestion from a chat. Comments welcome. 

  Georgia awoke to chimes that vibrated the whole house. Not loud, but low frequency so it would carry through the paper membrane homes the Chentry preferred.
  She leaped behind the "couch" she was sleeping on and tried to make herself small. Benhi scurried past   griping over his shoulder at her to "calm down, it's only my delivery."  She blinked a few times and tried to wake up but remained hidden.
   Benhi lowered down a platform out his door and pulled up his delivery. Once the platform rose to the same height as the floor, he flipped a switch and a force shield held it in place. He buzzed something to the delivery team and went about moving things off the "door."
  "Make yourself useful and come help me, Kapkah."
  Georgia glanced up from her hiding place and saw packages of various sizes. Most wrapped in the paper like substance the Chentry use, but some were square wooden crates.
  She moved out and began pushing things off the door plate. Benhi pointed here and there when he wanted something moved to a certain place. She huffed a couple times when something was very heavy and he came over and put anti grav discs on the side and things slid much easier.
  Once the pair put everything in order he asked her if she wanted to leave right away. He offered to open the door, but if she would stay a bit longer and help him a bit more, he would give her breakfast. She agreed to stay.
  This Chentry fascinated her. He asked what she wanted to do and treated her with respect. She glanced at him as they worked, trying to puzzle out his angle. Everybody has an angle. She'd learned that much in her short life.
  After they unpacked and sorted through what she could only guess was contraband, she started to work out that Benhi dealt in black market Chentry and human goods. No wonder he didn't turn her in. She had no status to turn him in either.
  He gave her some breakfast and sat nearby to talk. She ate more slowly than the night before. This time he gave her some guava nectar and she sipped it slowly. She knew the Chentry loved the drink but she'd only seen it once at the orphanage. Some of the other students intentionally spilled some so they could taste it while cleaning it up.
  "How long have you been on your own"" Benhi asked.
  Georgia looked down and fidgeted with her food trying not to answer too much. The night before he knew when she lied. She tried a bit of a sob story line to see if he would buy it. Told him she ran away from her "family," but he just glared at her.
  "If you are gonna work with me, Kapkah, I'm going to have to teach you how to lie," said Benhi with a chirpy laugh. She shot him a look of surprise and then realized her impertinence and fell to her knees in apology.
  "None of that, now, " he said gently. "Get up and let me have a good look at you." He motioned for her to lift her arms and asked her to raise her hair. She worried that he might be contemplating selling her into prostitution and she risked his wrath and told him she wouldn't do it.
  "You're too clever for that. What has it been, two years since you left the worker training orphanage? You have that look about you. You know how to behave and not to ask questions, but I need you to pass for upper class. I think I can teach you, if that sounds interesting?"
  Georgia didn't know what to think. She had questions of her own. Keeping her eyes averted, she shrugged.
  Benhi chirped a chuckle and went to his phone. He called up another Chentry and spoke so fast she couldn't catch a single word. He turned and looked at her and said a few more things and then hung up.
  "Tell me how you survived so long on the streets? I ordered you some new clothes and a portable shower unit. It will take a bit for those to arrive. We might as well get acquainted."
  "I don't know where to start," Georgia hedged. She wanted to keep her secrets. She was still reeling from being called clever. In school she often felt the sting of a whip for speaking too soon or figuring out how to do something without being instructed.
  "look, Kapkah, I trusted you enough to help me so far. I feel I've earned enough for you to trust that I mean you no harm. How about you start with your name?"
  Georgia took a deep breath and told him her first name. Then she confirmed the two years on the street. He invited her to sit down while they talked and after a few minutes she'd told him of her petty thefts of clothes, food and occasional shelter. He nodded and told her that he knew that there were quite a few underground humans scurrying about. He'd done a little business with a few and used them to run errands for him.
  He proposed a trade. He would help her with a reasonable status, so she wouldn't have to ever worry about being sent to forced labor. In exchange, she would work for him. She looked up at him when he asked, not told, but asked if she thought she could work with him. She held his gaze for longer than she thought proper and agreed.
  "Now you're learning, Kapkah!" he bellowed. He reached out to pat her on her back and slowed when she flinched. He only tapped her gently and tossed his head back in a smile.
  "Please, may I be addressed by my name from now on, "she asked.
  "Yes, my new friend, Georgia, " he said with a bow of respect.
  "Thank you, my new friend, Benhi, " She replied, returning the bow.

Thursday, September 19, 2013

Stop! In the name of love!

Some of us with albinism avoid using the term "albino" because it was used as an insult. I have other reasons that include, if you have cancer, you don't call the person with cancer, cancero. I am more than a medical condition I have. Though some of my friends, with and without cancer, like the term cancero. They're just funny people and I let it slide.

Here's the deal. Bullying with words can leave deeper scars than physical bullying. I chat online. I'd say a good 50 to 70 percent of my Facebook friends are from chat groups. The Internet is rampant with verbal bullies. The anonymity and lack of consequences emboldens cruel minded resentful people.

While sitting and watching others chat, a causal acquaintance called someone else a "retard." I sat there trying to think of some response that would let the person know that was NOT okay with me. Honestly, I never came up with anything.

The very next day I saw someone else in a different chat room say that something at his work was "retarded." That time I spoke up. I just asked the person to use another word. He was a bit defensive, but he understood.

I've had debates with people about the "albino" comments. People tell me it's used as a medical term. I have used it and I will probably use it again in the future. I have a preference for NOT using it. I do correct medical professionals who use it, but I don't press it. I do consider someone who uses it once I asked them not to to be a bully.

Feel free to express dissatisfaction with things, but consider how your words may effect those around you. Don't give me that line of crap about political correctness. When you walk in someone's shoes, or ride in their wheelchair, then maybe you can comment about how tough it is for you to find a better word to use.


Sunday, September 15, 2013

Doctor, Doctor!

Doctor, doctor, gimme the news! Well the week came and went and no call about the biopsy. BOO. I  guess the results didn't come in on his regular office hours. I bet I wont hear from him until Tuesday, like last time.

I waited until Thursday to take my shower. I wanted to be able to call the surgeon's nurse if we saw anything of concern. We didn't. It took a whole hour to wash, dry, get re bandaged. I scrubbed most of the beta-dine off, but there are still some patches here and there. Scars look fine and are healing well.

Good thing Murry is clever because I was right and the bandages they gave me were far too small. He had to engineer a way to cover both spots. Though only the wide one on my lower leg required duct tape. There's a lot of stitches in both. I figure they're going to hurt like an SOB coming out. All kinds of scab formed around them. Ah well.

After my shower, I went off to learn how to exercise at Curves. The very nice owner showed me all the various machines and I tried nearly all of them. One I couldn't do because either my leg or my arm wouldn't fit. I forget which it was. A couple more I chose not to try because I thought it would be rough on my wounds. I was there 45 minutes and feel it was a good workout. I don't really like the loud beat in the music but whatever. I can deal with it for a few mins.

I didn't get my heart rate up very high but I was taking it very easy. It'll be a nice compliment to Tai Chi. I'm going back Monday or Tuesday and a couple more times over the week.

Murry started a new job and he's been gone weekend days. Friday he went in to his old job so he had a REALLY long day. He's doing good and I'm proud of him. I feel a little abandoned but I'm not blaming him. With Kmart closing, he needs another job. He also got Kmart to give him flexibility so he can take me places I need to go.

I've got another post mostly written, I just need to proof it good. I'll post it soon. Comment if you like.

Wednesday, September 11, 2013

Luck be a Lady Tonight

Bright and early Monday morning I crawled out of bed, put on my rather nice jammies with the striped Capri pants and wandered off to the hospital. No sign of the sun, but the neighbor's rooster crowed his little confused head off. I don't like this new guy, he needs to learn to shut up when it's dark.

I asked them to put my name spelled phonetically on my wrist tag. So if they were trying to talk to me, they would use a name I recognized. Donay seems to work the best. For a time I was using a nickname of Didi, but I abandoned that long ago. Old roomie and some friends from back in that day still call me Didi once in a while. And if I am ordering I use it at a restaurant  It's annoying to have a strange name and I hated it when I was a kid. I love it (and my white hair) now though. 

So my group of "short stay" denizens had to wait for a couple minutes for the staff to come get us. To keep me calm I told Murry all my cat stories. I actually started it in the car on the way there. We saw a cat scamper across the road and that reminded me of my old rommie's cat Fuzzy. His sister found her on the road. She was soo tiny.. and had some bald spots and so he ironically named her Fuzzy. 

I wont go into all my stories here. I have a number of them as cats is funny ;) (bad grammar intentional al a Larry the Cable Guy. He says "I don't care who you are, but farts is funny."  and I agree! so is cats. ) So it seemed like a long wait, but eventually they came and herded us into the unit.

They put me at bed #7 woo. The curtain featured a beach scene with palm trees and though I couldn't see them, Murry described the two pictures on the wall as boats on water at a distance. One had three boats and I don't remember about the other. 

Big scary operations scare me so my pressure was high and it never really came down. A couple times the machine beeped at me. They had a little trouble putting my IV in my right hand, surgery was on the left side, so we didn't want to start on that side. Unfortunately they couldn't find a vein so left it was. 

The nurse anesthetist Mr. Garcia spoke to me briefly. He did tell me his first name, but it was unusual so it didn't stick. The first nurse started with Diana, then after a while Colleen and then Leila. 

First place I needed to go was up to radiology so they could inject a dye to find the lymph nodes. A nice radiology tech named Gerald came and got me. Once up there, he helped e out of my bed and put me on the COOOLD table. It warmed up after a bit though. He chatted with me while he injected four small needle pricks around where the area where the lump biopsy was taken last month. 

My surgeon came in and looked at the scan and the leg and put his initials so we made sure the correct left leg got the operation. He just put his hand on my good leg and talked nice to me. He definitely has a way better bedside manner inside the hospital. The radiology tech told me that my surgeon has a really good eye and can find lymph nodes without super fancy scans, but he gave him good ones anyway. It's nice to hear good things about a guy you barely know who's gonna be cutting you open. 

They were putting fluids through my IV and so after laying there in Radiology for 45 mins I had to pee. I nearly got all tangled up trying to get out of the bathroom, but I managed. Back down at bed #7 I talked to Murry for a bit and they gave me some medicine that helps keep you calm and I remember them wheeling me out of the alcove and then I was back and groggy. Thems some GOOD knock out drugs. 

I went under general anesthesia so they put a tube down your thought. This unnatural act gives you a sore throat. They gave me some ice chips and after a few minutes asked me what kind of juice I wanted with a list of choices. I picked Grape or Apple, whichever you see first. I got grape. It was like the best juice ever. Probably I was still high from the medicines. 

They talked to me about cleaning myself on Wednesday  (today) but I really wasn't with it enough to remember. I'm going to call the surgeon's nurse to ask her how to do it. They gave me a bag of bandages and antibiotic cream. The surgeon came by and again squeezed my leg and talked nice. He prescribed a pain pill and an oral antibiotic. 

I tried to tell them that I didn't think I needed a pain pill but they kept telling me not to be brave. I really don't feel Tylenol works on me and that's what was part of the pill I got. My pressure had one reading where the diastolic was below 100 so they took out my IV and let me get dressed. It's much easier going pee without battling an IV stand too. It hurt a little but not bad at that point. I took a lap around the nurses station and was feeling fine so I did another. I stopped and rested standing up for a bit then did a third lap.

The nurse Leila went to get me a wheel chair for discharge and she was just driving up when I was coming back from the third lap. She said she doesn't usually have to chase people down to discharge them. I pawed in my bag for my sun glasses and got them on just before it got too bright. 

We parked just outside the entrance so Leila wheeled us right out to the car. She wished me well we went off to get my meds from the pharmacy. I thought a Slurpee would help my throat so I told Murry I wanted one after my pills. 

My pharmacy has a walk up window so we parked near that and I wandered over and told them my name. They said it would be five mins so I walked the length of the front of their building. I felt a little loopy but not so I would fall. Murry went off to the dollar store across the parking lot and got some candy. 

When I got back to the window, there was another customer there and she was taking a while. So I sat down. I didn't care that I was in jammies and a robe. I'm not vain about being in public in imperfect condition. I don't think anyone even cared. 

So I got my meds then off for Slurpee! I stayed in the car and chatted with a 711 employee on her break. I asked her if she knew Lark, who works there and told her Lark used to work for me. She looked about 12 but said she'd been there almost three years and has a baby of her own. I think she might have mentioned her name but I don't remember it. 

Once home, Murry made me a nice bowl of chicken soup. I thought when I started it, I would only eat half, but my hunger grew and I scarfed the whole thing. A couple hours after that, Mur made me two tacos. I thought well maybe I am over doing it, but I was fine and it really felt good to eat. Later that night, I had a small bowl of cereal with my antibiotics. 

I didn't even try the pain meds. Yesterday, Tuesday, I had some pain that persisted for more than a few seconds so I took some Ibuprofen. Most of the pain up to that point was like.. being slapped on a sunburn. Not a tap or a bump.. but slapped. It usually went away as quick, and it usually happened while I was getting up or sitting down. This morning I took another couple Ibuprofen. 

I forget what medicine but one of them turned my pee a beautiful azure blue. The pre-op nurse told me this would happen and it tickled me to see it. It only lasted 24 hours, though. Then my poop had a bit of a blue hue to it. Exciting toilet time ;)

They gave me some glycerin soap so I washed off some of the beta dine around my leg. I was very careful not to get the bandages wet. Man that stuff is sticky and it took some effort to get myself clean. There's more and it's gonna be a chore to get myself washed and re bandaged today. 

So that's what happened to me this week. What's your life been like? ;) I find out sometime today or tomorrow if there are signs of spreading. I'll meet with an oncologist regardless. Might not be anything to do though. Melanoma isn't really a cancer they have "great" treatments with. They cut it off and take it out, but if they don't have anything large enough to see on a scan, there's nothing much they can do. And they're so different from person to person. It's a good sign that the tests haven't shown any masses to this point.

Thursday I am going to an exercise gym and getting on their program. I am going to take it SUPER easy. Then I have a weight loss group meeting in the evening. Lots of goings on. I'm feeling emotionally great and physically okie dokie. 

Friday, September 6, 2013

Oops I did it again

Pre-op consultation day went okay. I talked to a very nice nurse lady named Karen and she went over procedures and had me sign some things. Will I take blood products, yes and some others I don't remember.

My blood pressure was high, but she used a different cuff and it was closer to normal. She wrote down what size cuff to use and hopefully it'll be fine Monday. I have severe white coat (really just STRESS) pressure spikes. It's been fine in the regular doctor's office. She got me all used to getting it taken by having me go in and test it three times a week. I bet if my reg doc's nurse Pam took it, I'd be close to normal.

So Thursday night, I went to my first weight loss group meeting and instead of the regular meeting, they were having a pot luck. I met some people, asked some questions and ate their food. It was nice to have my first meeting be so casual. I feel I can hang out with these folks well enough so I think I will try and go with this group.

I have to go to these meetings to get a gym membership for free. They had some pretty tasty and mostly healthy food. Someone made an apple pie with Splenda that tasted like apple pie. They had a Hawaiian theme so they gave us those flower necklaces called leis. I told someone that on chat and they didn't know the word was spelled lei. Funny spelling.

When I came home I hung the lei up with my jacket. When I went to grab it this morning I didn't realize I grabbed the lei too. When I went to take off the jacket it fell down. I decided to put it on.

Okay, so evidently I do cosplay for medical tests! ;) Maybe it was a subconscious on purpose thing. I might bring it with me to the operation. I know they wont let me wear it during any procedures, but at least I can have it on the way in and out. Oh, wait, I just remembered, no jewelry. Dammit. ;)

Scared, but I'll get through it. Remember, tell me a joke and make me laugh. Funny pictures welcome! Post a comment, but after Monday I might not get to it for a day or two.

Thursday, September 5, 2013


Let go of mad GET GLAD.
Why are some people just assholes? Yeah, I get it, I've been online and on the Internet for years and I get that the anonymity gives some people permission to say things they wouldn't dream of saying to someone's face, but what's with the jerkness in the deep hearts of some people?

I so wonder about how people feel the need to tear down and hurt, just because they can? Who are they to question someone's grief or coping mechanism? What makes them think they could handle HALF what the other person is going through?

It's not a question of manners. There's a lot of netiquette. Like DON'T TYPE IN ALL CAPS. It's called shouting. If you want to get to know someone, talk to them, asking age, sex, location will turn people off. You can find way more out a person by asking about their hobbies or favorite TV show.

Maybe it's a shitty plan to gripe about other people, maybe I'm doing exactly what I dislike. Typical of me, judging others that which I abhor in myself. ;)

I dunno. Be NICE dammit. Just try. Let someone else have their feelings and talk about their problems and listen patently. Direct their energy toward a solution, but you're not in charge of that either. Some horses don't want your water. So what? Put water out anyway.

Love people for whatever place they are. I love my mother, but that doesn't mean I want to talk to her. I wish her peace and occasionally I try and sort out my feelings by talking about her.

I guess that makes me think of her as being kind of like one of those insensitives  Having no concept of how much people like her create their own life. Flat out rudeness is almost like breathing to them.

How SAD and painful to watch.

Okay, I am off to do stuff.. and to try and be nice to someone jsut because I want to. ;)