The words of a petulant child

September 23, 2016 at 7:07 AM | Posted in EYE believe | Leave a comment
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That’s how I felt as soon as I posted my last entry.

I felt physically ill.

I cried a lot. 

Over my own hurt and self-pity.

Over my cries of defiance that made me feel like I was yelling #NotAllMen or #AllLivesMatter

I know my feelings of sadness and fear are valid. But I’m going through a long drawn out mourning period that will continue for a long drawn out time in the future. 

What I keep forgetting is that with each visual change or loss I adapt. I live with it. I move on. 

I just have to keep going through this exhaustive cycle over and over again.

And so I am tired.

And sometimes numb.

Numb to others who have already adapted and moved on. Numb to their battles because I’m busy fighting my own. 

Sometimes I feel a jab through the numbness and I react in a much larger way than is necessary. I used to be on a hair trigger for anger, still am occasionally, but nowhere near as much as I used to be. Now I’m more on a hair trigger of sadness, depression, loss, disappointment, inadequacy, and fear. That’s a nasty recipe for a lot of things. This is why I see a counselor, to keep this crap in check, to keep going, even if I can collapse at any given moment. 

This isn’t an excuse, this isn’t a cry for pity. I’m just explaining how it is. 

The saying ‘can’t see the forest for the trees’, that’s me right now. 

Learning about the world I’m slowly moving into is also a slow process. I just tend to go kicking and screaming sometimes. I’m not anywhere near ready to live the life I want because I’m too busy living the life I got.

Basically, just because I don’t feel I should be part of the fight doesn’t mean I should get in the way. I don’t have the knowledge or experience of what most people who are blind have. 

I may feel dismissed, but I shouldn’t dismiss them. Their fight is real and is necessary. 

Here’s an article about why the #HowEyeSeeIt campaign is not necessarily a good thing: HERE

The Inbetween Space

September 20, 2016 at 5:14 PM | Posted in Change the World, EYE believe | Leave a comment
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I had initially written a bunch of this post already and was having a hard time writing stuff down. Mainly because I was trying to explain something instead of just writing the truth. The emotion behind it.

As I’ve said before I’m in this weird middle ground where I’m not sighted enough for the sighted world and too sighted for the blind world. I am legally blind according to some words on paper somewhere that says my field of vision is too small to be normal, or whatever that means.

But no matter what terminology you use, I’m stuck. In an Inbetween Space.

(Screw you autocorrect, I don’t want the hyphen in there, just deal with it.)

As I lose more of my vision I become more understanding and empathetic to the life of a person who is blind.

But six months of sleep shade training is not going to erase the around 35 years of my 36 that I was legally sighted.

Also, I still see so much. Most people don’t understand that. I may have a field of vision of 10-15 degrees with some wacky missing areas, but do you know how much of the world I see?

Look how much the Hubble Telescope sees in one small section of the Universe. It sees so much but it will never be enough.

I don’t see enough to get around without tools that find steps that look like a flat surface because they’re all the same color, that find trashcans that hide in the weird missing spaces, that let others know I may not see them as I walk by. I don’t always need screen readers, but I know how to use them when my eyes get tired. I know braille, but I read it faster with my vision than with my fingers.

My eye disease is a genetic disease and science is doing wonders with genetic research right now. There’s a foundation that I’ve followed for many years because they are working on research for my defect. because that’s what it really is, its a defect in my genes, not a disease really. But them along with some other groups are getting really damn close to amazing things. Like ten years from now close. As in, in ten years there could be a treatment to halt the progression. And even not long after that, possibly some reversal of the damage is possible.

How fucking exciting is that?

Now, don’t worry, I’m a realist and let’s be honest a really good pessimist. My hopes are there but I know it could easily not work for me at all, or it could all just fall apart. (What with science deniers and insane people trying to get into office. VOTE PEOPLE! Its too scary not to!)

So I know that there is a path in my future that could be complete loss of vision.
And I am prepared.

With skills.

Not with my emotions.

There are no amount of skills and knowledge that make me unafraid of that future.

My fear is valid.

I am allowed to have this fear.

That foundation I have been following has a fundraising campaign right now that asks people to try to do things while blindfolded. Kind of like the ice bucket challenge. I thought it was a neat idea because it let’s those who are sighted get that initial fear of being suddenly blind and having to immediately live their lives by doing tasks they would do everyday or were skilled at.
I was beyond thrilled when an actor that I admire took part and tried out his dancing skills under a blindfold. I was so happy to see him taking a moment and stepping a toe into this new world I’m slowly joining.

Some say my heart grew three times that day.

Now, I am also part of an organization that is very independence oriented. Fighting the good fight to show the world they can do everything anyone else can and should be allowed to without restriction or prejudice. I agree with that for sure. But right now they seem to be upset with the fundraising campaign the foundation is doing. They feel it is perpetuating a negative view on those living with blindness. I can understand this to a point.

However, those 30 something years of my life as a sighted person has it’s hackles up at that reaction.

I’m torn.

Yes it’s not an accurate description as those with vision loss have training and tools to assist in doing those everyday activities.

But how is it not a good thing to start a conversation?

How many of those people you think who tried this out didn’t ask as their first question afterwards “How do you do that?”

I know it’s often my question after trying something new.

My biggest problem with all this is the eradication of fear. yes it’s good to show the world that those with vision loss can do whatever they put their minds to, but why is fear not allowed to be there?

Why am I not valid?

Why am I being erased?

Am I taking things to personally?

*looks at past blog posts* Have you met me?

Of course I take it personally.

This is who I am.

A person who is slowly going blind and is scared out their mind about it. I’m not one to be all hunky-dory about it. I want to be real about this. It’s fucking scary.

I know I will be just as capable as I am now when I lose the rest of my vision.

But I’m scared of what I will lose. And I’m allowed to mourn that.

Color.
Facial expressions.
Clouds.

These are the things I will miss the most.

But why am I not allowed to feel this way?

Why am I not allowed to hope for a cure?

Why is there venom towards a group trying to start a conversation? There is a call to join in and add their own videos to the campaign to join in the conversation. Which I think is great, but it feels liken attempt at a hostile takeover.

Maybe I’m blowing things up out of proportion but these are my emotions.

My emotions are valid.
No matter how much or how little vision I have.

And please check out howiseeit.org
I think it’s a great conversation starter.
If you have any questions, please ask me.
Please ask someone questions.
Be a part of the conversation.
And donate.

Also also, if you are in disagreement with me I honestly would like to talk about it. Please. Truly.

I don’t want to invalidate anyone else, I just want to fight for my mind right now.

(PS I will be changing the name of this blog soon as I don’t think it’s appropriate anymore)

Lordy, lordy, I feel anxiety risin’.

May 12, 2016 at 11:59 AM | Posted in AWEsome Sights, Blah Blah Blah, Center training, Despair, My brain, my enemy. | 2 Comments
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6 weeks. 6 full weeks until I’m done at the center. Has it really been that long? Is it really only that short of a time away? I may be freaking out a bit. There’s a lot to do in a short amount of time. I’m worried and excited to go home. Worried that I’ll revert to old habits and excited because I miss my spouse and cats desperately. 

Today my anxiety level was raised quite a bit. It was time for drops. Where each of us are dropped off somewhere and our task is to find our way back to the center. I’m generally not too worried once I’m out of the vehicle but the driving around beforehand is the freakiest. I get so worked up to the point of tears. It’s awful and I hate it. But as soon as I got out of the car I knew I was downtown and it didn’t take me long to get where I needed to go. Got a coffee while waiting for the bus. Then made my way to the center. I’m still shaking from the anxiety and adrenaline from the exhilaration of knowing where I was. 

I realize I haven’t talked much about what I’ve been doing lately because I’m going through so many emotional changes that it’s easy to forget the other accomplishments. So I’ll give an update. 

Food I’ve made: vegetarian chili, lemon bars, coconut macaroons. All were delicious and I may have shoved the coconut macaroons into my face so fast that I felt ill afterwards. 

 Also I have started a sewing project where I’m making a crochet hook holder out of a washcloth. You don’t even know how hard t is to sew a straight line with a machine. It’s super freaking hard. After looking online for some tips I’ve made a pattern out of a sheet of Braille. Making a row of the letter k and sewing in between. 

Shop class: things are going well. I’ve used a hand held sander, a biscuit cutter, the chop saw, and I’ll let you know what my project is when it’s all done. 

Braille: still moving along nicely. 

Cane travel: I’ve been going downtown a few times and having to find addresses with a fellow student/staff trainee and then finding the way back to the apartments. 

Computers: I’ve been doing well using the screen reading program JAWS and I can surf almost as fast as I can sighted. But seriously web developers? Get your act together. Make your shit accessible. It’s not too hard. 

I’ve been networking with some artists and have an opportunity to show a piece of art this summer so that’s exciting. 

I’ve been having a real rough week after an amazing weekend with my fantastic friends and my wonderful spouse. It was so hard to come back an I’m having a hard time getting my head back into the swing of things. Just floating through each moment hoping I can make it through. Sleep has been especially difficult. I have maybe slept 4-5 hours a night. And I’ve been straining my eyes reading print because I can read it faster and I need te escape. 

Here’s hoping you’re all having a wonderful day and week. You all deserve it and I wish you all the best. I could really use a hug. So I offer one to you all. Thanks for reading. *Big hugs*

Me-male

May 2, 2016 at 9:26 PM | Posted in Change the World, Body Schmoddy | 2 Comments
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I’ve been thinking about writing this for a while and slowly forming what I wanted to say and how to say it. The passing of Prince the other day was another devastating blow and a kick in the rear to embrace myself for who I am because there’s just precious little time to be happy and comfortable in your own skin. Bare with me as I jump all over the place with this. This is my process to fully figure out what I’m even thinking.

One of my biggest problems in life is labels. Labels we put on ourselves and labels society puts on us and labels we put on ourselves because of society.

I was OK with being called a tomboy as a kid but I guess I didn’t really think about it because my favorite character on TV (Laura Ingalls) was called a tomboy all the time. Thinking about it now I wonder why I was even called it. I didn’t like being outside much. I did play softball and basketball, however. Maybe it was because of that? Maybe it was because I didn’t care too much about make-up or how pretty my hair was even though I kept it long. Maybe it was because I was taller than everyone else my age.

I never felt like one of the girls. I crushed on all the boys, though. I can tell you the name of every boy I’ve ever had a crush on in grade school. The first boy was named Aaron. When the local newspaper took a photo of our kindergarten classes because of the quilts we made I’m not looking at the camera, I’m looking for where Aaron is in our group.  I certainly chased after him in class at least once.

I still never felt accepted as a “girl”. I don’t think I thought of myself as a “girl”. I was born with girl bits, I knew that. But when I dreamed as a kid I had dreams of being part of a super hero family (I may have just had a precog moment about The Incredibles) but I was always seeing it through the dad’s eyes. I was always the father in these dreams. I’ve stopped having those set of dreams but I have definitely had more where I was the male character since then.

When I first watched The Labyrinth and saw how beautiful David Bowie was and that he was wearing make-up it was a huge eye-opening moment for me. When Prince’s music videos showed up on MTV I was blown away by another gorgeous man in make-up. Then I saw Tasha Yar on Star Trek:The Next Generation and saw a beautiful woman with short hair. I finally had started seeing some examples of gender that made sense and felt comfortable to me. I went out and had my first real short hair cut. I wanted to look like Tasha Yar so bad. I felt so much better with short hair. I felt more like me. I seem to keep forgetting that. I’ve had my hair long a lot over the years and now that I’ve found the style I really like I look back at pictures of me with long hair and I don’t even see me. I see someone who is lost. Someone who doesn’t feel comfortable inside their own self.

I see someone who’s trying to fit into the “girl” label.

Another label I’ve had a terrible time with is “wife”.

I always wanted to be married when I grew up. I knew I didn’t want to be like my mom and my aunts. I didn’t want to be the Susie homemaker. I didn’t want to be at the beck and call of the men in my life. I was so desperate to get rid of my maiden name because growing up my sis and I would refer to the women in the family as the *insert maiden name*-wives. (I’m trying to be nice here. They know who they are and some might read this. I love them, but their lives were not for me.) But now that I am married, and have been for ten years come June, 2016, I have struggled with the “wife” label so hard.

I hate housework and that made me feel worthless because it’s been so ingrained in me that I should do it whether I like to or not because I’m the wife.The guilt I’ve had over the years has eaten away at me. Add that to deciding not to have kids….

I had wanted kids, to be pregnant, to give birth, to teach a new generation. Only within the last 5 years has the decision been made not to have them. Before that I felt awful because I hadn’t become pregnant. We weren’t trying very hard but it seemed to come so easily to everyone else around me that I felt a failure as a wife, a daughter, and as a daughter-in-law. My inability to give grandchildren added another layer of guilt.

Now even though I am happy and comfortable with my/our choice to not have them I still get a quick sharp pang of jealousy when one friend is pregnant or another is pregnant for the nth time. Then I roll my eyes at myself and them and move on.

I started being interested in make-up a little when I was around 12-13. I wasn’t really allowed to wear it (except one time in grade school when my sis and I were snow white for Halloween). I was allowed to wear it to a dance one time but my mom didn’t know much about make-up as she wasn’t allowed to at all. My dad had done some make-up for theater in high school. I looked like I was ready for the theater as well. It wasn’t great. Thankfully the lights were down low. (Granted this was the dance where a boy had come up and told me that I had no rhythm and that caused me to rarely dance in public ever again.) I never asked any of my friends how to put on make-up. That’s not what we did. They wore it from time to time but I didn’t get into it more until high school and college.

I had come to a point where I enjoyed what I did eye-make-up-wise and then my husband told me I looked better without make-up. Instead of just taking it in stride or telling him to eff-off I let my stupid brain decide that meant I never could wear make-up again. (My brain is really good at making me do things to not offend anyone anymore at my own expense. Please see the last post about how I am much better about this now.) This wasn’t on my husband. This was on me. I made the choice. I then put that into the same basket of things that I wasn’t good enough for.

During my recent enlightenment about myself I also have realized that the main reason I ever thought it was okay for ME to wear make-up is because some beautiful men do. And if they can and look fabulous, then maybe I can be allowed to do it too. I always find myself wanting to look like the beautiful men in make-up or the beautiful women in make-up while in men’s clothes. Gackt and Mana (both male), Yoshizawa Hitomi (female), Tilda Swinton (female), Harry Shum Jr (male), and a few others have had quite the effect on me. Yes they are playing characters but not many people would have the guts or confidence to take on these roles if they were not secure in themselves. I place their genders just so you can see the roles being bent. Well, not bent. Just represented in a different way. I really think it is deliciously freeing to have everything both genders has to offer at your fingertips as a palette.

(Clearly none of these pictures are mine. Thank you Google.)

As you can tell the media is so important to me. I live inside TV and movies. I never saw myself in them at all. I still really don’t. When I was young and prepubescent I didn’t see many girls in shows that were tall. The only thing I remember was Sarah, Plain and Tall….. not exactly a nice thing to have rattling in your head. Girls in movies, cartoons and TV were always shorter than the boys. Always looking up to them and looking so fragile and I never felt I was allowed to be fragile. I was too tall to be fragile and needing to be taken care of. Or rather I didn’t  feel worthy of being taken care of.

Then as puberty hit me with a brick and stole most of my metabolism and care for exerting myself I never saw myself in anything. If there was anyone overweight they were the short funny random girl who was a sidekick and only shown for about five minutes. I remember one of the first anime shows I watched had a group of school girls. One of them was tall and big. But they drew her like a giant man with masculine musculature. She sometimes had a high-pitched voice and sometimes a deep bass of a voice like the Hulk talking. I thought it was funny until I really thought about it.

The British show Miranda took on the awkwardness of being super tall while wanting to be feminine and shown as a fragile and worthy lady of attraction for the man of her dreams. She dealt with the same things I did as a kid there. If you were tall you were immediately cast as overweight.

Needless to say, I had many things telling me I didn’t fit, I was wrong, I didn’t deserve what everyone else deserved. The biggest influence, the biggest hater, the one who made it unbearable to live in this world from time to time was me.

So now, with my recent epiphany about my self-worth I have started to embrace the full me. I am not made from any mould. I can be feminine  and I can be masculine. I can have hairy legs while wearing a short frilly dress. I can wear jeans and a tee-shirt with red lipstick and glitter eye shadow. I can wear a suit and tie while showing off my shape. I can be 5’11” and wear 4″ heels. I can have hairy pits and a mostly shaved head. I can be overweight and sexy. I can be me.

A long time ago when I tried to buy myself make-up I would get discouraged, just like when I went clothes shopping. I kept thinking that each color looked horrible on me, that nothing would ever match or work for me. What I realize now is that the colors were fine, the clothes were fine. The person I was trying to put them on was someone I didn’t like.

So I’ve been shocked by my change in view of myself. The first lipstick I put on in years looked great. The eye shadow I put on looked great. It wasn’t the color. I was pleased with the canvas. I found a worthy canvas.

I am worthy.

This may seem like small potatoes for some but I’m going to be 36 next month. 35 of my years I have spent thinking I was not good enough. Think of all the things that are younger than 35. 35 years is a damn long time.

Don’t worry if you’re not there yet. Some are lucky to become who they are in high school. Some discover themselves in college. Some knew it the second they were born. Some of us need time. Like wine and cheese. Delicious wine and delicious cheese. We take time to get it right.

I’m still in the early butterflys-in-the-stomach stage of the relationship with myself so I’m sorry (not sorry) about selfies on twitter. I think Me and Myself are really cute together and I hope they go far. They deserve it.

With finding myself comes some major changes. Life is finally coming together in many different ways and some changes need to happen.

Earlier I mentioned how desperate I was to get rid of my maiden name that I took on my husband’s name without letting my feminist side’s opinion be heard. I keep thinking of changing it and anytime I mention it to someone they say “you can still change it”.

So I’m going to.

Also, my first name. It was given to me before anyone knew who I was. The name Elizabeth has so many different ways it can be shortened, causing an infinite amount of personalities with those nick-names. I have become very good at being a different person to suit whomever I am around. I have had enough of that. It’s time to be me. There’s been a name I’ve always wished I had instead for a very long time.

So I will change it.

My middle name will stay the same because it is one I’ve always liked and it has a connection to my Aunt and other members of the family who have the same middle name.

The name change will be within the next year.

I’m not quite ready to have anyone call me the new name as I’m still figuring out who I am fully. I’m not even able to call myself it out loud just yet.

I just wanted to announce that it will happen.

I welcome questions if you have any. I’m becoming more of an open book as well.

I am worthy of being known by others as well as by myself.

You are too.

You, my friend, are awesome.

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How you doin’?

Men, put on your make-up. You’re beautiful.

Women, you be as feminine or as masculine as you want. You’re beautiful.

The Light

April 4, 2016 at 10:28 PM | Posted in Center training, My brain, my enemy. | Leave a comment
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I may be losing my sight slowly now but I think I have been blind my whole life.

For so long I have lived in the darkness, shrouded in my fear of the world and how it saw me. How it would treat me. How it could treat me. How I thought it was going to treat me.

We base our view of the world on our interactions with it.

I have been around of a lot of negative people and experienced many negative things. These things build up over the years and can cover your sight. Causing you to be blind against anything that could be a good thing.

Every once in a while you try to put on some rose colored glasses and hope to see something beautiful in the world around you. You try. You try so hard.

But at the same time you’re too afraid to look at something beautiful. It doesn’t feel real.

That familiar darkness that has been building up along your spine and encircling you with negativity is safe.

It is always with you so it is a comfort to be covered in it. It’s like a sticky tar you can’t get rid of. But it knows you. It knows everything that has ever happened to you.

It knows of the boy who made fun of you because of how you danced that one time…. So it tells you not to do that ever again….

It knows the time a boy from class who lived up your street told everyone he felt an earthquake every time you walked around the house… So it reminds you that you are fat an unlovable….

It knows every. single. time. you were turned down, rejected or dropped to the side and remembers it all in detail so it brings it up out of the blue to remind you that no one thinks you’re worth anything.

And you believe it.

There’s too much evidence not to.

It makes you suspect everyone. It makes you wait for the terrible things. It makes you expect the terrible things. It makes you embrace the terrible things. It makes you see terrible things in every little thing that happens every single day.

Yet, you still return to it.

I am my own abuser. I am my one bully. No one hates me like I do.

DID.

Layer after layer of horrible sticky tar has been slowly removed over the years thanks to counseling and thanks to being here at the center.

I’m some place where no one cares that I have pink hair, that I have a face full of piercings, that I’m overweight, that I’m tall. No one cares if I’m attractive to look at or not.

It is beyond freeing.

I’m in a place where they are talking just to me. Seeking out my opinions. Sharing jokes. Checking on me. Offering an ear, a shoulder.

Just me. The actual me.

At first the slimy, clingy tar of darkness did it’s normal work of making me react poorly to knocks on the door, calls on the phone. All I saw was annoyances… people are annoyances waiting to cause pain to you… is what my comforting tar beasty tells me. It builds walls as tall as the sky.

I had written for my counselor a chat with the tar beasty and then I tried to write a conversation with the positive side of me.

She was extremely hard to talk to. But what I got mostly was that she actually was there. I do have a positive side to me. A side that actually wanted me to be happy. And also believed I deserved to be.

Sometimes a single moment can change everything. A ray of light that is too bright can suddenly appear from nowhere. Maybe it was a beam that consisted of multiple small rays that converged at the right time to be magnified and obliterate the tar from my eyes.

A suggestion that change can be made.

A romantic scene from a tv show.

A constant stream of creative release.

A promising word about your future career.

It can be anything that suddenly makes you so happy that nothing else matters.

Now I get it.

I am allowed to be happy and I am. I am allowed to be loved and I am by not only others but also by me.

I fully have been enjoying my friends without any fears that I was just kept around because I was another warm body.

I realized that for so long I have been so worried and focused about how I was being perceived and seen that I wasn’t showing my love and appreciation to my partner. I was too caught up in the labels of “husband” and “wife” that I forgot what really mattered.

I can be happy.

I deserve to be happy.

You deserve to be happy.

Love what you love. Don’t worry about what others are thinking. Love what you love.

I’m not saying it will be easy. I’m currently worrying about how cheesy this post may seem. But I’m happy I’m doing it.

Mistakes happen. You will get hurt. But it’s not the end of everything good. There is so much good and beauty in this world but tar is so very hard to see through. But you can do it. If I can find a calm center of happiness, then you can.

You deserve it.

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The H Word

February 23, 2016 at 5:40 PM | Posted in My brain, my enemy. | Leave a comment
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Help.

How could this tiny little grouping of four letters be one of the most difficult things to ask for from another human being. We let children ask it at all times and do out best to fulfill every request.

Yet when we become adults we assume we never need it again. We assume that as adults we are supposed to be able to do everything ourselves. If we show any need or want for help we are worried that we will be perceived as weak, childish, and incapable.

Why is that?

What happened?

Who broke our spirits?

Why is it seen that when we are no longer in the direct care of our parents that we are to do everything along?

This terrible attitude has made us into a bunch of humans who walk around as alone and frightening to others just like the shambling zombies in the movies and tv shows we watch. Maybe we really watch these things because we are actually sympathizing with the zombies. We see ourselves in them. Just in survival mode, going from one meal to the next, not noticing others and their needs. Not asking anyone to pass the brains at the dinner table.

Um. Pardon the segue there, I’ve been watching a lot of The Walking Dead lately.

Back to the word help.

I know I am terrible at asking for it. I’m pretty good at wanting and needing it, for sure. I’m just horrified at the thought of asking for it. I don’t want anyone thinking I am weak, or in any need at all.

There have been people in my life who are so emotive and eloquent about their emotional states and sometimes it gets to be too much that it drowns out anything I have to say. There have also been people in my life who are so repressed and enclosed that any words of emotion coming from me landed as irksome and childish which makes me shy away.

So now I’m to a point where I’m damned if I don’t and damned if I do. I am a person who does not want to make waves. I’m the rock for some of my family when they are sad and need that shoulder, but I try very hard not to talk to too many people about my own problems or discomforts.

I simply don’t want to be the center of attention, or rather don’t want to be perceived as someone who thinks they should be the center of attention.

I mean, who do I think I am? What’s so special about me that I deserve anything?

And yes, my brain thinks that I don’t deserve anything.

If I perceive any possible need/want that may possibly in some manner inconvenience anyone else then there’s no way I will pursue that.

Help is the main thing I do not ask for.

I will give it.

I will not ask for it. Well, maybe sometimes I do with a very meek voice filled with sorrow and anguish. Because at that point I am full to the brim with need and can no longer cope without letting it overflow. Even then I will only let a little slip out. Just enough to get through the next day or obstacle or even just the next moment.

In the world we live now we don’t have tangible proof of not being weak to our fellow man. Many moons ago we showed our toughness with a dead animal or a new hut. Something physical we can point at and say “See? I did that, I can do that. I am worth having around.”

Now that we are evolved and have intelligence as a sign of worthiness and there are so many things people can be specialized or interested in we can’t commonly agree on “what is worthy.”

One of the things we do find common ground on is our ability to deal with everyday life. Our coping skills. That person is great in a pinch. That person will crumble under pressure. That person is worthy. That person is not.

I’m not even sure where I’m going with this post. I know I need a lot of help and I need to ask for it. Maybe I just wanted to reach out and let others know they’re not alone. There are so many of us who have a hard time with this. Maybe this will motivate someone to reach out.

You are all deserving of help. We all are deserving of help. In whatever capacity that may be. We are all worthy.

You are worthy.

 

A month in

January 31, 2016 at 1:42 AM | Posted in Center training | Leave a comment
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I have finished my 4th week here at the center for the blind and I am in a very different place than when I started. I was miserable at first. So amazingly miserable. What with having an actual schedule, meeting new people, spending most of the day under sleep shades, amongst many other various stressor. It was and continues to be difficult. Not only being away from home and all things familiar, but also with being back in an environment where there are expectations. I have random moments of anxiety on my way to various classes and although during the classes I am mostly able to relax and enjoy the learning experience.

I wish there was some job where I could be paid to put needless stress on myself.

I would be super rich.

We had “drops” the other day. Each student is driven around to confuse them and then dropped off and told to find their way back. You are only dropped in a location where you have traveled before (except your very final one) and challenged to find your way back to the center. I was so scared and stressed out about it that I woke up on the day of covered from head to toe in a stress rash with hives. I was miserable. It’s been over a week since and I’m almost fully healed from it.

Although it took a rather long time and a bit of help my fellow drop-ee we found our way back. I was terribly upset. I wanted to do well. Let’s be honest, I wasn’t going to be satisfied with anything less than perfect. I keep putting “perfect” as the only way that I can accept anything I do as being “good” or “successful”.

Not so surprised I’m a terribly good stresser now are you?

During a day where I felt I did really horrible because I walked up a couple driveways just a little bit and walk a little to the right when I cross streets, my teacher had a chat with me. He talked about how some students want to be perfect every time. He challenged me to talk about what exactly was negative about what I had done that day. I tried with all my might but couldn’t fully point out anything because I was able to realize what I was doing while I was doing it and correcting it. I didn’t walk out into the middle of the street, or into anyone or anything, I made it to my destination completely physically unscathed. Trying to see the positive through the cloudy and clingy negative is difficult but actually not hard as I thought when I actually focused.

Yes I do and will have bad days, where I feel horrible before, or during, or after a class, but I will need keep finding a positive element. Even if there is a small one I’m able to come up with, then I will be okay.

One thing I have accomplished is walking completely around the block that the center is located on. It’s just under a quarter of a mile. I did it without going into a street, not going too far up a driveway, and all in one piece. I may have taken a long time to do it, but I did it.

I did ask a lady where the sidewalk was once when I was a little bit up a driveway and having a confused moment. Since I heard her voice calling out to help me I asked….. then she said it’s over there and grabbed my arm and led me. I told her thank you but I’m in training and needed to find it, but she led me anyway. I’m not sure English was a first language but it still made me feel temporarily upset. I managed to shake it off and continue on.

Other things I’ve done the past two weeks was grocery shopping for class, baking a coffee cake, going to an escape room (and successfully escaping), drilled holes, and learning how to read on a braille note.

The braille notetakers are awesome, I would love one but they are super expensive (thanks to supply and demand and also horrible people profiting off the blind. 

Check this out: Click Here This is the one I am borrowing from the center. I’m starting to read Matilda by Roald Dahl. Something a little easier than normal to read as I want to get my reading wpm up. With not having much practice I’m at about 11 wpm. I really want to get that puppy up.

I feel like I should be talking about something philosophical and grandiose, but I’d just like to tell you all (myself included) to live in your moments. Any bad moments are just that, bad moments. You’ll be okay in a couple, few, some, many moments. But you will be ok.

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Just a quick late night sketch for you. Bundled up for winter this girl still has visions of spring on another world with her odd flower on her head. 

 

Life in the Shade

January 15, 2016 at 12:01 AM | Posted in 9-5, Braille Wail, Center training, EYE believe | 2 Comments
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Tomorrow will be the end of my first two weeks of being at the center for the blind in Lincoln, Ne and it has most certainly been an interesting trip. I thought I would dread putting the sleep shades (blind fold type device) every day and after lunch but it hasn’t been as bad.

The first day or two were the worst. I didn’t want to spend that much time in the sleep shades and I was hating the social aspect of meeting new people and having to spend the majority of the day with them. I was just plain miserable.

But I am surprised that I feel better about it for the most part. There are definite things I am not looking forward to, such as how long it will take before I can be considered for graduation. I also am having a terrible time with sleep. New/different bed, no cats, no husband, different sounds, and lack of a pattern are all to blame.

I have homework some nights, I have various meetings throughout the week and I also once a month have to take part in the cleaning of the common areas at our apartment location. Also, I have to consider the fact that there is a movie theater on the same block as me and my massive addiction to the new Star Wars movie. (6 times as of writing this!) Not to mention cooking my own meals for lunches and dinners and keeping the apartment clean for weekly walk-throughs. I don’t have a lot of time to de-stress and gather my energies for the next day.

It should be ok once I figure out a workable sleep/work schedule. Just a matter of getting it done…….. I just jerked up from falling asleep for a sec there; it seems to be my new move now. Head banging to the sleep metal music playing in my head.

I have been working hard and I’ve done a bunch of things so far and I’ve been told I’m doing well so I’ll take their words for it. Here is a list of sorts for what I have done under sleep shades so far: navigate the center’s building, walk outside to the two bus stops we use, walk over to a nearby footpath bridge, navigate and use escalators and bus,  fried eggs, made brownies from a mix, washed dishes, thread a needle, sewed on a button, learned a new way to measure pieces of wood, practice on the new UEB standard of braille, brailled notes, start to learn a screen reader program called JAWS, there may be more but I can’t remember right now.

Still nodding off and fighting sleep. I really should go to sleep now…..

If you think this stuff is not at all difficult, I challenge you to try some of these things blindfolded (safely) and then tell me how you did.

This is incredibly mentally and physically and emotionally challenging.

I have only cried twice so far. (4 if you count my hearing of both David Bowie’s and Alan Rickman’s deaths.) Once when I was after navigating to a different part of the building, and I cried to myself without anyone really realizing. The other was this evening because my braille homework was just not clicking for me so I became extremely flustered and upset.

I know I will cry at other times but that’s ok. This is tough.

But I have become mostly accustomed to the people around me. Either they’re going through the same things as I am or they’re teaching it and have gone through this training as well. So they know what they’re talking about when giving people reasons to attend the center and how to empathize with what we are going through. Pretty much everyone is nice and understanding so that helps a lot.

 

I am going home for the weekend and will take some breaths and enjoy the three days at home before trying out a new week at the center.

Gotta keep on keeping on.

If you’d like to see how I’m learning to measure things in shop class here is a video I found about the tool we use. the video is a bit long and it is not the best filming but if you watch for a bit you will see a pretty cool device.

Watch this video on Youtube (link should open in a new tab/window)

P.S. I have a piece of valuable advice to give to sighted people everywhere. Please, if you see a blind person and they ask where a place/thing/person is please, for the love of whatever you believe in, do not immediately take their arm and lead/drag them to the location/thing/person. Use your words, cardinal directions, amazing eyesight, and creative minds to help. Or if you have a problem with that, ask if that blind person would like your physical help. We are not helpless babies that don’t understand. We are human beings trying to make it in a sighted world. We have our own skills and ways of getting around. Even if you are embarrassed for yourself or that person while they are seeming to be lost in a room do not assume that that person is dumb or lost. We have to take longer to see what a room is like, and where we need to be.

I am not a UPS package needing to be delivered.

I am a human being trying to make do as independently as I can, just like you.

I deserve that respect as much as you do.

 

Adventure Time

December 10, 2015 at 3:12 PM | Posted in Artsy Fartsy, Braille Wail, EYE believe | Leave a comment

So many things have happened, so many things will happen.

That’s life of course but here’s what is going on with me.

I FINALLY passed the final braille transcription and I am now a certified Braille Transcriber by the Library of Congress! Woo!

Now I get to learn UEB so I can get that added to my certification. Also so I can read new publications. Thankfully there are a lot of publications out with the old braille so I can read everything that is out. I feel bad for the kids who are being taught only UEB from now on because they will miss out on so many publications. I hope things will be re-transcribed. Maybe something I can look into doing….

I had checked out a braille book from a library and had decided to work on my reading. I totally should have picked kids books. I went in to the deep end far too soon. For a book that normally is over 300 pages in it’s paperback form it is in 4 binders (volume) of double sided braille. Reading for fifteen minutes most every day for a few months I have managed to read half of a single volume. To be honest I have given up for now. I will go to kids books or something easier and work up to the giant books. Plus I’m pretty sure I’m way overdue on returning these braille books. I should send those back soon…..

I’m painting a bunch. Not as much as I think I should be doing but as much as I can do giving I spent so many years not painting so it will take a long time to get back into practice.

I actually tried out to get my work shown in a gallery at the library I used to work at, but was not chosen. I’m okay with that because I know I want to have more items that I’m proud of, instead of items rushed. If you saw my college gallery show you would have seen the results of things being rushed. It’s not that great.

This is why some paintings take a really long time to work on. I get excited about an idea and work on it until I am exhausted over it. Then I leave it alone for several months. I let myself stew over it, and wait until I get that same passion for it again. Then I work on it some more and keep going until it is finished which can take a couple weeks.

I’ve started a twitter account that is just for artwork so if you’re interested check it out. The twitter handle is @enirenbergart I also opened up an Etsy shop here: ENirenbergArt

Don’t worry, I’ll post a couple of my favorites here.

My upcoming adventure is going to be quite interesting.

I did decide to go to the Center for the Blind in Lincoln, Nebraska to get some serious training. I have been training here in Omaha but it is time consuming with the terrible bus service here. I will be starting in January and am hoping to get done by June for my 10th anniversary with my husband. I’m both excited and scared.

I know it will be hard and at times I will most likely cry. I just need to accept it and that it’s okay. I know it will be helpful and I will come out with skills that will become so natural to me that when/if I go completely blind I will be able to continue life fairly normally.

I do plan to do posts about my adventure there. Probably a weekly summarization so I don’t go insane with anxiety trying to post everyday. i will continue to paint as well because I’m taking my gear with me so I will post some art along the way.

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“Zipper” 12″ by 12″

 

With White Cane Comes Gray Responsibilities

October 6, 2015 at 10:38 AM | Posted in EYE believe | Leave a comment
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I now don’t go anywhere from the house without my white cane. I realized I really needed it while walking up a hill with it. I had looked straight ahead and couldn’t see the tip of the cane, not even up a hill. That was quite a large area that could be filled with hazards at any given moment. I clearly needed the assistance. 

If my pink hair didn’t make me stand out before, the white cane sure does. 

I can still see all of the stares. 

I can see the curiousity, the shock, the judging.

I constantly feel like an imposter. I feel like I should act more blind out in public becuase I have the white cane. I find mysef not wanting to read on the bus, like I’m not allowed. As if everyone would stand up and point at me shouting “LIAR!” I find myself holding my phone closer to my face if I know people can see me. If I’m walking along a busy street I will keep walking until my cane finds the trash bins in the way even though I saw them further out. 

I try to catch myself doing those things and correct them. I owe no one an explanation. If someone cares enough to ask then I will happily explain. 

It’s difficult to act as myself while holding the white cane. I’m certain it’s because I have the same view of blind people that the rest of the world has. Either you are sighted and can see everything or you are blind and can’t see anything. It’s the same with how any disability is perceived. It has to be completely visable (excuse the pun) or it is not a true hinderance. 

I’m lucky enough to have a white cane to tell the world of my disability but even then my glasses take away some of its power. I’ve seen the glances back and forth between them. 

I think an empathy class is needed in school. Spend some time teaching kids how to handle themselves around those with a disability and how to handle it if they ever became disabled. 

Maybe grown adults won’t become dear in headlights when they see me coming towards them making me navigate around them. Maybe those with wonderfully normal peripheral vision will use this ability to be more aware of their surroundings and be more mindful to those around them. 

Watching as people jump out of the way of the cane as if it were a poisonous snake is both satisfying to my anti-social heart and sad for the lack of awreness of others. 

So how should I carry myself? Do I try and represent the blind community by pretending to be more blind than I am? Or would I be doing a disservice to both myself and the community by not just being myself  and educate those around me on the varying levels of blindness?

The answer may be obvious but that doesn’t mean that it is easy. I can see a lot more than anyone really knows or understands. Yet while I start training to deal with the vision loss I have to act as if I have no sight at all. 

I feel pulled between two worlds. Too sighted to be blind, too blind to be sighted. It’s a rather lonely plave. 

I don’t want to talk about it with friends and family as I can’t do it clinically and I don’t want to be in tears every time I talk to them. I don’t want to be perceived as always a downer. I’m supposed to be funny, I’m supposed to point out the silver linings. That was my goal afer being a hateful, judgemental bitch for far too many years of my life. 

I just don’t have the energy to always be happy. I can’t be a cheerleader for blindness. I can’t be cheerleaded at. It’s like when your friends tell you how amazing being single is right when you are going through a terrible break-up. It’s not what you want or need to hear at that time. For me I am in that constant break-up stage, year after year I am continuously mourning the loss of my eyesight. It’s not like I woke up one day from an accident or sickness and am suddenly blind. That might be easier to deal with, I don’t know. But this slow degredation is torturous. 

I had wanted the cane and now I have it. Now I just get to figure out what it means to be me again. 

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