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)

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.

IMG_1682

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.

 

In The Blink

May 5, 2015 at 5:50 PM | Posted in Braille Wail, Despair, EYE believe | 2 Comments
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Oh hey, I should finally write a post on my blog. It’s been a little while. (Looks at last post, sees “5 months ago” and grimaces.)

Oops. I apparently have been away longer than I meant. That or I was abducted by aliens and experienced lost time. Or a lot of changes are going on and I haven’t been ready to talk about it.

I’d bet on that last one, if I were you.

I wasn’t sure if I should continue this blog and maybe start a new one or if I should change the name of this one.

After a fun runaround in the medical community (Too many different doctors, ACK!) I finally had the right test that mapped my field of vision. I’ve attached photos of the current fields of view. the blue line is the one that is used for blindness. To be legally bind due to the field of view, it has to be less than 20 degrees. This time it most certainly is. I can now be considered legally blind.

Here is the field of vision for my right eye.

Here is the field of vision for my right eye.

Here is the field of vision for my left eye.

Here is the field of vision for my left eye.

I knew it was going to be bad, because I’ve noticed more of my peripheral going over the years. I’ve also said how I’m sick of waiting around for the ball to drop and to just get on with it. I was not prepared for it actually happening.

I was not prepared at all.

I still haven’t cried about it. I know I need to and I know it’s hurting me more by bottling it inside, but I don’t think I can deal with it yet.

I’ve switched to logical mode. If tears do start welling up I suck them back in and I toughen the skin. It’s not the time for crying yet.

I’ve finally found a new doctor for general practitioning and they seem to care about your whole well-being. I’m so used to being just another patient to be run through the mill that this was a surprise and reassuring. On their advice I’ve started seeing my old counselor that I haven’t been to in a year and a half. It was really nice to see her again and with her I should be able to slowly work through the emotional side of things.

Until then I will keep the logic shields up.

I have been getting help and working with the Nebraska Commission of the Blind and Visually Impaired. They help individuals realize their work goals as well as how to live independently. I have a case worker who will be helping me in my desire to make, show and sell art and I am working with a woman who is teaching me skills with cane travel and other things.

This training is pretty intense. they like to give the same training to everyone so they can decide what works for them no matter the level or ability of sight. To do that, everyone is equalized with a blindfold. What I use is pretty neat. They’re called sleep shades and i can keep my eyes open while wearing them. I can’t see a thing (except those pretty flashing ripples of light that pop up every once in a while. Thanks RP!)

So I have been learning to walk around the state building in Omaha under shades, just using my cane and vocal queues from my coach. They say I’m doing well. I’ll take their word for it.

(Pause for a moment while those lovely flashing lights float around and cloud my vision for a second.)

Okay.

Another thing offered is a super intensive training at their center in Lincoln, Nebraska. It’s an immersive course over a period of 6-9 months where I would stay there in Lincoln and have classes five days a week. 4 hours in the morning and 4 hours in the afternoon. All under those lovely sleep shades. Classes are braille, computers, home management, cane travel and wood shop. Yes, you heard/read right, wood shop. It’s confidence building course, plus you get to play with power tools.

They really want me to go to this training. They’re excited for me to be proactive and do this early so I can already have the skills as my sight fades more.

I understand this, I really do.

I went on a three-day stay, where for those three days I would shadow someone who is currently enrolled and stay overnight in the apartments. the apartments are pretty nice. Studio apartments with a decent bathroom and kitchen and nicely furnished.

It was interesting. That’s pretty much the only way I can describe it. I learned things. I got some confidence with the white cane (I even ventured outside around the building, where yes, I did cry a little due to my fear of heights. apparently walking up a slight incline under sleep shades is terrifying.) I read 1 1/2 pages of braille. I can write it decently, reading I’ve never been trained on so it was quite difficult. Took me about 3 hours to do it. Took me right back to childhood. Computers was fairly easy and soothing because it was brushing up on my keyboarding skills without the distraction of looking at the keyboard or screen like I normally do.I even chopped a green pepper and washed dishes under the shades. (Wood shop didn’t happen because the teacher was sick.)

Everyone was pleasant, helpful, encouraging and patient.

I was the one not ready. I’m not emotionally ready. I need to get to the acceptance end of grief or a least a lot closer to it to make it through that training. I also am not sure I want to be away from my husband, friends, and cats for that long. Sure I can see them on some weekends, and even some weeknights if they really wanted to make the drive out.

I have another meeting at NCBVI this week and I will be able to talk about it more with them.

Oh and for those keeping score, I got my second transcript attempt back for braille certification. Got a 75/100. Not good enough, needed 80. I may have sobbed a lot when I got those results. I have my third attempt finished and I am currently proofreading it. Third times a charm I hear.

Get in Shape, Girl

February 4, 2014 at 6:04 PM | Posted in Body Schmoddy | 4 Comments
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I have been thinking about how unmotivated I am to work out even though I really want to lose weight before my tornado tour trip. I’d like to be a bit more comfortable while cooped up in a van with other people. I am motivated in thought but not practice. It is so difficult to connect the two.
I think about this almost daily. This morning is no different. I do my best thinking in the shower and I was thinking how I could get in shape in time.
That’s when I noticed a jingle had popped into my head. The neurons holding onto this memory must have been so excited to finally remind me of something from my childhood.
This is me at Christmas in 1986 I think, at my grandparents house.

There it is on my left. (I may have been spoiled horribly.)

There it is on my left. (I may have been spoiled horribly.)

Trying on the sweatbands.

Trying on the sweatbands.

BI was insanely happy to get this gift. It was called Get In Shape, Girl. I was excited because it was something from a commercial I had seen on TV.

(Seriously, what is with the girl at the end of the ads bending over?!)

It has finally hit me how long I have struggled with body image. Yes, the aerobics craze was at its height in the 80’s and yes, kids like to do what their parents are doing. But the message of ‘show the world what you can do’ is pretty damn sickening. I also enjoy that there are no overweight children in the commercial.
To this day that is why I dislike going to gyms* I have a feeling I’m being looked down upon by the religiously athletic and born thin people. There is rarely someone anyone near my size

*This does not include Curves. This was the only place I felt mostly welcome. I say mostly because really, how accepted is a pink-haired, facially-pierced girl really going to be?

Edit 2/9/14: It has been several days since I started this post and that jingle will not get out of my head. I only have the ‘get in shape, girl’ part rolling over and over in my skull. My brain seems to be commanding and judging me with this horrible mantra.

It reminds me of the horrible judging poster up on fourth floor at work tell me to take the stairs. The only time I am really up on the fourth floor I have a book cart with me. I try to rationalize that of course I can’t take the cart down the stairs, but that poster makes me feel bad about myself anyway.

Inanimate objects should not be able to shame me.

Now, off I go to eat burritos and malted milk balls as a reward for actually using wii fit today! (And maybe off to play some Rebecca Black to get this jingle out of my head!)

River of Thoughts

February 11, 2013 at 9:04 PM | Posted in Preposterous Ponderance | 1 Comment
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I’m into day two of camping on my couch while I try to get over this wonderful head cold.

Right now I am being held down by my sleeping cat, so I couldn’t get up even if I wanted.

I once again got to witness a rocket go up live online today. It was taking up the new Landsat. Learn more about it at Nasa.gov .

Last week my husband was ill (with something different than what I have, of course,) and so I had to take the bus to work for a couple of days. The bus stop isn’t too far away from my house but it was before the dawn so it was very dark. I used a flashlight like a cane to help me along the way. The first morning wasn’t too bad, I was prepared for it. I had a great view of the crescent moon through the trees at the bus stop:

Lovely view through the trees.

Lovely view through the trees. Sorry about the blurry phone pic.

The second day I had to go I was a wreck. I had taken out the garbage to the curb and was near panic mode. It was extremely dark and I started to get scared as I was carrying the bins down our steep driveway. The darkness shocked me. I apparently was not prepared mentally that morning. The walk to the bus stop was filled with anxiety. I did however have another great view of the crescent moon in a slightly different part of the trees.

Through a filigree of branches.

Through a filigree of branches.

Later that evening after setting out a plan to stay later downtown to buy eggs and having to change my bus schedule I had a break down. While about to fix some eggs for my sick spouse I managed to drop all but one of the carton onto the floor. I was undone. I started yelling and berating myself. I got so worked up I couldn’t breathe and was in mild hysterics while trying to clean up the shattered eggs. (Really, who isn’t annoyed with cleaning up eggs!) I was also angry at myself for this reaction. It was only eggs.

But it wasn’t only eggs. It was every last little thing that has been bottling up for a while. It was unkind words from a coworker, it was the darkness frightening me, it was a sick husband I couldn’t drive to the doctor if needed, it was the bus system, it was a cat who scratches at the wall to wake me up, it was unanswered letters, it was some stupid broken eggs.

Everything has a higher level of frustration for me now, and I need to allow myself moments of release. I need to not bottle it up. Sometimes, I just need to get over myself. Sometimes, I need to take better care of myself.

I went to my retina specialist this past week and things are looking well maintained. The medication is keeping the macular edema under control.  With new pictures we were able to see that the pigmentation has not spread to the middle of my retina yet, so that’s a great thing.

To be quite honest, some times I wish it would get worse faster. I’m stuck in a middle gray area. I’m not legally blind, or blind enough to be recognized as such. I’m also not sighted enough to get through the world like other sighted people. It feels so easy to despair and whine about my situation. Misery is a comfortable and familiar place for me.

Happiness and appreciation for my life is a difficult thing to achieve. It seems like a foreign concept that is unattainable. It takes a lot of work to be happy.

How can you accept happiness when there is so much to be sad about? The bad things in my life are not little things that are easily ignored, so when I try to be happy about what I do have I feel I am leaving a large part of myself out of the equation.

I never have a moments peace in my head. There is always conflict. If I’m not finding fault with one thing, it is with another thing.

In a way I have brought this on myself. I had decided from an early age that I would not be a follower, a sheep  with wool over her eyes. I didn’t want to follow religion blindly with out researching what the world had to offer. I didn’t want to be the “typical” woman, hair always done in the same boring way, make-up perfectly painted, dress fashionably for my age. I didn’t want to be subservient. (Just ask my folks how much back-talking and fighting I did over the years.)

I wanted to be Cindy Lauper, Christa McAuliffe, Sally Ride, Tasha Yar from Star Trek: TNG, Denise from the Cosby Show, Frida Kahlo, Georgia O’Keefe, Tank Girl, Annie Oakley, even all the way back to an Allosaurus.

I wanted to be me. I wanted to be everything. I had a list a mile long of what I wanted to do when I grew up. I could never decide. Mainly because I wanted to do it all. I still want to do it all. A little here, a little there. I could never devote my brain and time to one specific thing as that would take to much away from everything else in the world. So my mind has always been at conflict with itself.

The inability to be happy comes along with it. I wish I could be happy with everything the way it is right now, because I know it won’t be forever and I’ll get to do something new all the time. I just don’t see it that way. I see it as I’ll never find what I’m looking for. I’ll never be happy with the now, because it is not the what could have been or what might be tomorrow.

It is really not a healthy way to live.

I know I need to change this thought process (I’m a work-in-progress, a year and a bit of therapy is slowly working.)

It’s as difficult as trying to stay on a diet. It’s easy to give up.

This couch is too heavy to carry alone.

December 6, 2010 at 11:49 AM | Posted in EYE believe, Preposterous Ponderance | 3 Comments
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It has been very hectic here. So many things are changing, but so many things stay the same. We have moved to a new apartment and my Mother has the extra room. Many friends came out to help us move and it was very nice to have the extra hands, and the extra drivers. It is insanely frustrating that I am unable to drive. I have working hands, working feet and a mostly working mind. The eyes have it, though. Missing areas of vision are a little hard to ignore. It seems strange to be affected by something that no longer exists. (On a plus note I went to a specialist to see if I have Glaucoma but she didn’t see a single sign of it! Seems that the cataracts are what’s making my sight worse.)

The move took several days and was exhausting. My husband did not get a proper vacation during Thanksgiving. I’d say we are thankful for our friends and the help they gave. The couch has always been a problem. It is heavy and awkward. My husband and a friend were able to finagle it into the old apartment and we were not looking forward to getting it back out. This time it was decided that it would go out the balcony. With ropes and nerves on edge it was done. It somehow fit into my Mom’s van and we stored it in the garage we are renting at the new place.

Now, I bet you’re wondering why I am talking about this couch?

I am having a really tough time. My vision is the biggest but old thoughts and feelings have come forward and are trying to take root. When I was a teenager I had a problem dealing with everything. I was a cutter. That’s how I dealt with uncontrollable pain. I did it in college as well and have not done it since 2002. This is the first time I have thought about it. I’m pretty sure that I would not do it again as I know it would upset my husband and it will hurt!

The stress of the move, family issues, classes, and visual frustrations have brought forth my lack of self-confidence, serious low self-esteem, fear of failure, fear of being insignificant( and now on top, add fear of being alone in the darkness.) I had a severe break-down. This one was worse than any other I’ve had before. In high school the worst incident consisted of me sitting in my closet with fresh cuts on my arm contemplating the bottle of pills in my hand, crying my eyes out. This time I just couldn’t breathe. I didn’t want to do anything harmful to myself, however.

We were unpacking and trying to get the apartment into a better, livable shape. For some reason I like to do this sort of thing alone and get frustrated with people when they ask if I need help. I see this as a slam at my ability to accomplish anything. I was felling anger and frustration building and bubbling up inside and I did snap at my Mom. She decided to go into her room and told me to ask her if I need help. My husband just ignored me for the most part. (that’s what it seemed like, anyway.) I sat down in the living room and tried to calm the anger and sadness. I got up and tried to continue unpacking. I went into the bedroom and collapsed down. I couldn’t breathe. I would breathe in but I couldn’t release it. I called out to my husband when he walked by that I was scared and that I couldn’t breathe. It was so painful and humiliating. I didn’t want my Mother to hear me so he closed the door. After much provoking and prodding I started to talk about what I was feeling. I had so many things rolling around that they probably didn’t make sense as I talked. I talked about frustration with family all the way to cosmic conundrums. We’ve decided I need some sort of help. Whether it is from a therapist or something heavier I don’t know yet.

I am afraid of getting help, however. I am afraid to be labeled as a crazy person. I am afraid to be looked at differently by my husband. I am afraid of not being who I think I am.

The couch solidified it for me. We were bringing it in to the apartment from the garage. My husband and I trying to carry it and my Mom opening the doors for us. My arms were rubber. I could not hold up my end of it for very long. Once through the doors my Mom helped with the finagling. The couch was so very heavy even with help but it was so much better than if I had tried to move it myself. I may have a lot sitting on my brain and conspiring with gravity to crush my very soul but if I ask for help and actually listen to that help and advice, I may be able to get the couch into the apartment a little easier.

I have an excellent idea, let’s change the subject.

September 26, 2010 at 6:51 AM | Posted in EYE believe | 2 Comments
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I am not looking forward to the next couple of months. I have two online classes plus my braille correspondence and now we are going to be moving. So, packing boxes will be added to the mix. We’re staying in the area, we just would like to be in a different area of town and away from the noisy people here. Whether it is into another apartment or a house of our very own remains to be seen.

I dislike packing. I love unpacking though. That means I get to arrange things in a new way. Packing just makes me go through everything and realize how much junk we have.

I am also having a rough time emotionally with feeling like a burden to family and friends. I feel outside of so many worlds. I am lost in a fog and it seems I am to stay here a while.  I am not as well-sighted as my friends and family so I have to rely on them to help me make sure I don’t fall over something and land on my face. However, I am not disabled enough to be called blind. I can see what I believe is a large portion of the world. The sky still seems vast and all-encompassing when I look up. The road is still there ahead when I’m in a car. With my right eye the lines are still defined, I can still see objects and recognize them for what they are because they look no different.

The little things are my downfall. I can be taken out by a glass on the floor, a chair sticking out further than normal, a stair whose color is so uniform in low-light to the next stair. If I use only my left eye then it is like looking into a watercolor painting. No defining lines, fuzzy bright colors, and the world is full of blob-shaped things (that’s with my glasses on). I stopped driving because the pedestrians are wily and you never know when they will jump out at you. I am quite certain if I ever caused a person harm merely because I was stubborn and in denial about my vision loss I would never be sane again. I would fall apart and cry forever.

I can see so much, but not enough to get along smoothly in society. I have lost so much vision, but not enough to be assisted by government in any way.

I know I am retreating from the world a little. I am more afraid of things, and so uncertain of myself and my abilities. I already felt lumbering and ungainly due to my height and weight and now the vision loss has added to my dangerous clumsiness. My already low-self esteem has been sitting on my shoulder pointing out all the terrible things about myself and what I do.  I feel foolish for having such an unhealthy attitude. I will never get along in this world and be happy if I can’t find a way to snap out of it. Then the voice of doubt takes over and points out how foolish I look being so big and cumbersome yet meek like a frightened little mouse at every noise, stare and whisper.

I think this move will help with a lot of this. Something as simple as being on the bus line will help immensely. I will have more freedom instead of feeling like an old hermit.

On a nicer note, I actually had a pleasant visit at the retina specialist. The wait of course was not that wonderful but he actually did a longer examination. The news was not so happy but it felt nice to be worth the longer examination. It is not a wonderful thing to feel like they are being dismissive with you because there is not much they can do. He wants me to go to a glaucoma specialist. My pressures were way up, around 25 each (anything higher than 21 is not good.) This has been the main attack plan for the retina specialist, keeping my pressures down so I wouldn’t get glaucoma. I’m not sure if I am getting this because of the RP or because of the injections I had in my eyes as it did say glaucoma might be a side-effect.

Hooray.

I think I need to start meditating each day to combat the anger, frustration, despair and fear that keeps trying to consume me. If I can focus those thoughts out of my body and mind instead of harboring them, I might be a happier person to come home to. (I’m quite certain my husband is very sick of coming home to a grumpy face everyday.)

Where has the time gone?

January 19, 2010 at 11:13 AM | Posted in EYE believe, Preposterous Ponderance | 2 Comments
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Three months later, apparently. I’m quite certain I was consumed by knitting Christmas presents and planning a couple of trips and now a new member of the family. We now have a beautiful kitty named Hope.

We did a whirlwind trip for Christmas. We drove back to Casper, Wyoming on Christmas Eve to surprise our families. My father-in-law was in on it. We had to bring him in on the surprise as we were sure they were planning on doing that to us and we might have passed each other on the interstate. This was the first long trip we made without me being able to drive. I normally don’t help with the drive, however it was nice knowing that I had the ability to do so.

My Mom got to see a little more of how I need to be led around when there is low-light. Navigating driveways and parking lots covered in ice and snow and under low-light was so difficult. However, I have an awesome husband who has been holding my hand and elbow showing me the way. I weigh a lot more than him and I worry when I fall I’ll hurt him as well. He’s assuring me that won’t happen.

New Year’s Eve we spent mostly driving up to Madison, Wisconsin for our friend’s party. It was great seeing everyone again. We talked and talked and played board and card games. It was a lot of fun. I managed to not hurt myself getting to the bathroom and back to the room I was staying in.

You can have the cleanest floors, the widest hallways, the widest doorways and I will still bump into them. I am covered in mystery bruises and scrapes that I don’t remember how they get there. I know I bruise easily so any brush, bump or whack into something and then I have a reminder.

I had such a wonderful time on both trips and I know that I sound pretty negative about certain things. This is how I live. I have no idea how to be positive when the day is ripe with obstacles.I’ve always been a glass fully empty person. It’s not even half-full. My father has pointed out before how I only remember the bad times. He’s completely correct.

It’s very difficult for me to see the shining good things while I’m allowing the bad things to be large black blots over them. I know there are wonderful things in my life. I’m married to a man who is pretty amazing, patient, helpful, understanding and tolerant. I have a roof over my head. I have a family who loves me. I have opportunities to learn and live the way I want to. However, this are all hidden by something. My inability to drive, to see everything, to go anywhere I want to. I even use my weight as an excuse. I’m very good at labeling myself a lost cause.

I’m the only one who can change this. I’m aware of what needs to change but I’m unable to actually do it and stick with it. I have the best of intentions but the worst of motivation. I’m lucky if I am able to tell myself to close a bag of snacks before I finish the entire thing.

I have a little glimmer of hope that is in a package oddly named Hope. We didn’t name our cat, but it’s fitting. I could watch her for hours, even when she’s asleep. She’s been a brat every once in a while but I know she’s just learning her surroundings and where she can go and can’t go. She also is nocturnal so it’s trying when I’m trying to sleep and she’s clambering all over the room. We’ve had her almost a week and I’m already in love with her. There’s nothing like a purring cat curled up in your bed, whether it’s on your back, chest, side, hip, or feet.

Here she is:

Hope

I have more pictures of her and from my trips on my facebook.

I am going to the regular eye doctor Feb 6th and will see how much my prescription has changed and how coke bottle-like my glasses will have to be. I’m also going to inquire how close my left eye is to being legally blind. I would really be surprised if I’m far away from that point still.

Hope everyone had a great holiday season.

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