Tags: angsterbation, emotional validity, eyes
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.
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.
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.
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.
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)
Tags: body image, gender, gender role, Men in make-up, self-worth
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.
Men, put on your make-up. You’re beautiful.
Women, you be as feminine or as masculine as you want. You’re beautiful.
Tags: art, hands up, peace, planets, space, trees
I finally finished my second attempt at my braille transcription for certification. It’s mailed in and now I get to wait.
Actually what I’ve found is a great weight lifted and I can breathe a bit better. I’ve been able work on some paintings finally. I have two that I’m currently working on but I have put them aside as they are at stages I don’t have supplies for or don’t want to work on it.
I started this piece because I sit at home all day reading online about the protests across the country in response to the injustice of the American “justice” system towards black people. It makes me sick that victims are not even getting a chance for justice. I wanted to make something simple, because it should be something simple. Treat everyone like the humans that we all are.
Five hands of different colors reaching up towards images of love, peace, equality and the world.
Here are a couple detail shots.
I’d love to sell this and donate to the Ferguson Library (Here). Comment if you’re interested.
Another thing I am doing is trying to not waste the leftover paint I have when I’m done with a painting and trying to create something else with it. I finished this one yesterday. it’s a landscape of another planet with advanced civilization, Nice orange sky with three light blue moons. A silhouette of a futuristic domed city with a tower. I really like how this turned out and I’m going to try to do random other world scenes with my leftover paint.
For those that follow me on twitter you already saw this next one. I was inspired by a title of a song by Disparition (Check them out here.) Their song titles can be so specific and descriptive that I wanted to make a few just based on the song titles. Here’s one based off of the song title “The People Who Carry Their Forest Around With Them”. I’m finding that I’m more of a literal painter, as much as I would like to be more abstract, I just can’t not make a thing a thing.
I can however exaggerate facial features and skin color. Three green skinned figures each carrying a large tree on their backs with a background of birch trees.
My style seems to be all over the place as I’m doing what I should have done right after college. I got scared of and lazy with the art process so I didn’t spend that time figuring out a direction to go in. That’s what I get to do now.
Tags: boycott, economy, government, patriotism, politics, USA
I know it’s been a while and this is quite different from what I normally post but I was having a conversation with a German friend about views of our own countries and how other countries view our countries. It started from this magazine I processed into the library collection today.
We were talking over Twitter and 140 characters is no where near enough to explain some things. I decided I needed to do a post about it. It may seem all over the place but I was responding to her last tweet to me in the conversation. I expanded of course, so here it is.
I vote. It may not mean that much in each election, but I vote. The government, media and analysts all have spent many years stating that black people and Hispanic people are not coming out to vote. Now congress has shut down the VRA which will do one of two things. Lose even more voters which will skew the votes even more than what they are right now. It will create a larger chasm of distrust in this country. Or it will cause people to rise up and shout and scream and get their votes in as best as they can.
I do not have faith that arms will be raised that way. I do not think this will motivate people to get out and vote. The feeling of hopelessness and helplessness is enormous. The country is so wide, geographically, and spread apart that it is so much easier to have the mindset of ‘not my problem’ or ‘it doesn’t effect me’.
Everything is so far away so our hearts are tied into our tiny worlds instead of realizing the ties we should be paying attention to are larger.
I never understood countries who’s capitols are off in a corner of the land. It makes no sense. Can you imagine if the US capitol was moved to St. Louis or Kansas City? How great would it be knowing it would only take a few hours by car or plane to get to the capitol from anywhere in your country?
Do you think the red and blue states would change due to that move? Do you think that there would be more balance, and more connections to each other this way?
I know I would care about what was happening in my country if I was closer to the capitol. Knowing it wouldn’t take very long to go join a larger protest?
Yes, every state has their own capitol and can get organized there, but when you are a blue sitting in a sea of red, you’re pretty sure your voice is not going to be heard. (Same the other way as well, of course).
Changing my buying habits is a difficult thing. I am a person who has a hard time clipping coupons and this would rank up in there. There are too many corrupt companies, with too many fingers in too many pies. I find it difficult to trace where everything comes from. There are too many people vocal about their opinions that are so against my views that I can’t keep up with what companies these people are involved with.
I don’t make very much money, I work three days a week. I have a decent hourly wage but with around 18 hours a week it doesn’t add up to very much. I would be up a creek without a paddle if it were not for my husband’s job. Because he makes more and works more I feel as if my views and opinions on where we shop are not allowed to be taken into consideration. If I could never step into another walmart my entire life I would be a happy person.
I have already made some choices that I have been able to stick to. I will never donate to The Salvation Army because they try hard to not help out gay homeless people. I will never go to a chik-fil-a because of the owner’s views on gay people. I have also added Jimmy John’s to this list, recently.
In my ideal life I would only buy vegetables (that I haven’t grown myself) from local growers. I would only buy meat from local butchers. I would only buy goods from local vendors, not chains.
I can not afford to do that.
Hardly anyone can, anymore.
This is why I despair about being an American.
Yes, we are a ‘free’ country, but we have become a ‘free to be poor’ country. Capitalism and Democracy weren’t set in place to forget our fellow humans. I think one of the most horrible things invented was statistics. Reducing everything to numbers makes everything so cold.
We are not in the vacuum of cold space.
We are on a warm planet, we have warm bodies with chemical reactions that need connections and community to exist.
This coldness has turned to fear in America. 9/11 threw us for such a loop that as a friend has said, threw us back into the 50’s.
We were so arrogant about our safety. Thinking no one would ever attack us again after Hiroshima and Nagasaki. When someone did again we were so shocked that we reverted to familiar feelings. Fear. Fear of anything different. Fear of skin color, fear of gender, fear of age, fear of everything. It’s easier to fear something instead of taking the time to learn, to trust, or to accept. We’re a cat backed into a corner who has lost their sanity and reverted to deadly instincts due to irrational fear.
This is when NSA and CIA come in. They say it is necessary to collect ALL OF THE DATA so they can prevent terror plots. I remember hearing something like that when we invaded Iraq. This collection did not prevent Boston from happening. It does not prevent soldiers dying from IEDs or snipers.
Our country is failing not due to lack of money and jobs. It is failing due to indifference to the people, the faces, the lives.
I wish there was a way to scrap our entire system and start from scratch. A building can only take so much patching up before there is nothing that can be done to keep it standing. I don’t think small changes are the way. I think a broad clearing of the table is needed. And let everyone be in on the suggestions and decisions. It may seem daunting but I think it can be done. People need to feel like their voices are heard. Not a form letter from their representatives about their personal beliefs of the issues.
I could go on more, of course, but I’ll leave it at that for now.
Tags: accessibility, Despair, transit, white cane
My eyesight is not being happy of late (I’m quite sure it’s stress related for the most part). I’ve fallen down twice in over a week and I’ve nearly fallen many other times. Stairs are a huge problem now. I’m having trouble even in daylight to discern where they end and begin.
I plan on getting my field of vision mapped again and it will be interesting to compare how much has changed.
I really need to find a lightweight walking stick to help out but that requires research and a way to get to where I need to go.
On a related note, I’m really disappointed by Omaha’s transit system. They don’t run very late at all. They have a transit center at one of the local community colleges yet they don’t run all their busses after evening classes are done. Also there’s a storm chasing class I’d like to take but it’s at a spot where I wouldn’t be able to take the bus home. This town is not accessibility friendly. Not for low-visioned individuals or non-car owners. Perhaps I should get more vocal about it along with the issue that only legally blind people are allowed by law to use white canes. I may just do that…
There are so many days where it just feels great to be alive. I crave those days. I didn’t understand those days for a long time and lived in the presumed comfort of misery. It was safer, I knew what to expect. The only thing that could make misery worse was more misery and you already were feeling it so it wasn’t as scary. Great days were dangerous, the difference to misery is so much greater so I didn’t think it was a good idea to have a good anything. It was safer.
I have now, with the help of therapy, have come to realize how good it is to have good in your life. It’s deserved and should be a part of everyone’s life.
I’ve also come to the place where bad times are okay, too. I know they still happen, I just need to not live in them. Getting back on the horse is the name of the game.
Even when feeling soul crushing despair I know it’s okay to feel this way. I know I don’t have to feel this always. For now it’s here and I need to work it through. Tomorrow will bring something better because I can start the day differently than how I ended the last.
Tags: eyes, inspiration, music
This man is beyond words. Nobuyuki Tsujii 辻井伸行 has been blind from birth but is the most beautiful piano player I’ve ever heard.
Here is his official website: NobuPiano
Here is a beautiful performance from this year where he won the Gold.