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)

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.

 

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.

Slow Burn

August 25, 2014 at 9:41 AM | Posted in Despair, EYE believe | 3 Comments
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Lately I’ve been seeing many of those ‘feel-good’ articles in relation to vision loss. So-and-so has [insert genetically inherited eye disease] and despite this is [insert super powered feat of magnificence.] Like these lovely people, Blind woman climbs mountain in Maine, Blind man to tackle seven marathons in seven states over seven days for Aussie kids, Visually impaired Alexandria resident set to take on the Ironman world championship. Don’t get me wrong, I do enjoy these stories from time-to-time.  Reminding me that there is life after blindness, one can overcome so many things and dreams can come true.

However, there are times when their stories make me angry. These people are not like me. They do not choose to do things like me. The very idea of running for more than the time it takes to run from the bathroom to the bedroom without a towel or robe makes me shudder and ache.

My accomplishments are much smaller in comparison yet huge for me. As I lose my vision slowly my headline would read, “AREA WOMAN MAKES IT THROUGH THE ENTIRE DAY WITHOUT CRYING IN FRUSTRATION DESPITE IMPENDING BLINDNESS” or “FEMALE WITH FAILING VISION FAILED FALLING OFF CURBS, FRIDAY.” Those are the happier headlines (and proof as to why no one pays me to write headlines.) Most days those headlines turn into the pathetic, long-winded, and depressing comic that everyone skips in the newspaper.

The truth is that every day I go through a little bit of hell.

I filled out a survey about my vision for Foundation Fighting Blindness (so they can track our info for their research) and one of the questions asked “How often do you think about your vision?” and one of the answer choices was ‘every day’. I, of course, chose that one right away. Not a day goes by without being reminded that my vision is slowly going the way of the dodo (and hopefully jeggings.)

I thought of a lovely descriptive visual for you about where I’m at in my vision loss. Imagine you are stuck. You’ve been caught in a way that your legs are pinned but your feet are sticking out. Your arms are free and can reach food and water so you can stay alive but you don’t have enough strength to free yourself. In front of you is an exploding volcano. The lava is racing towards you at a snail’s pace. You can feel the heat on your feet. You know its coming.

As far as you can tell there are two other types of people. The successfully fled and the unfortunately dead. You’re pretty sure there could be others like you, but clearly not in your vicinity. Your fate is simultaneously so very close and very far away. The heat is hotter everyday, it may just be half a degree, but you can tell.

Most days you wish the lava would just pick up it’s pace and finish the job.

There are days you remember that a bunch of those fled villagers are working almost around the clock to find a way to rescue you. You’re not sure which you want to happen faster because either direction is better than where you currently find yourself.

There’s also the really ‘fun’ days when you beat yourself up for being depressed about your situation because so many other people have worse things happening to them. Then, if you’re lucky, you’re able to remind yourself that frikkin’ lava from a frikkin’ volcano is about to frikkin’ burn up yo’ behind and you are able to allow your depression to continue.

Now I know what you might be thinking, blindness does not mean death. My response would be close your eyes or look up into a sunny sky. Now imagine that that would be the only thing you could see forever. Never ending darkness or the brightest white light or even a fog of light. I don’t even know what experience I will have. I do, however, take a small solace that it won’t be a test pattern (kids, Google it.)

Anyway, how is this not like death? Or at least something to mourn. My life will be forever changed no matter what happens. No matter what scientists or engineers come up with or when. Some people think about where they will be in five years, I wonder what I will see.

My vision is so different now than five years ago. I do know it would be much worse if not for  the medication. I would have already lost my central vision, that much I know. So, of course I’m very thankful for my medication.

Right now I’m dealing with fuzzy vision in my left eye (fuzzy as in like looking through glass coated with vaseline), some of my central vision is going and flashes of light like ripples of water are more frequent than normal. My retina doctor believes I am having side-effects from cataracts surgery. More fluid build-up in the back of the eye and the membrane that holds my new lenses has become cloudy. Along with my normal two pills a day, I now have to put two different drops in each eye four times a day for six weeks. I may have to go back to surgery to have lasers take care of the cloudiness in the membranes. Exciting.

There’s currently no hope for my peripheral vision loss.  Thanks to that peripheral loss I bump into so many things. I used to only bump into a couple things a couple times until I become familiar with its location. We all do it with our surroundings. You are able to get around your house from small visual cues and spacial memory. If your visual cues change you can bump into things until your spatial memory takes over. My visual cues are constantly changing so my spatial memory can not keep up. I am a pinball in my own kitchen. The stove, the fridge, the counters are all my enemies. My feet are the enemies of my cat’s tails. All of this is frustrating. It hits deep into my ego, insulting my intelligence, and it makes my blood boil.

I’m not taking this change and loss well. I’m not running through life embracing joy like they shove down your throats in feminine hygiene commercials. I finally have an actual reason for moping around like I did for no reason other than hormones in high school (don’t worry, I’m not going to try writing poetry again *shudders*.)

I wasn’t sure about actually posting this, until my husband encouraged me. Basically for the same reason I was writing it in the first place. I wanted to let anyone know that its okay to hate what is happening to you. Its okay to feel horrible day in and day out. Its to be expected. Its scary. Its difficult. Its heart-breaking.

Your pain is your own, but you are not alone.

 

Cloudy with a chance of cataracts

February 1, 2014 at 4:12 PM | Posted in Artsy Fartsy, Braille Wail, EYE believe | Leave a comment
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I feel compelled to write the first line about how astonished I am at how much time has passed since my last post. But this time I won’t.

Wait. Darn.

Oh well, moving on.

Something I took away from reading The Nerdist Way by Chris Hardwick was instead of a New Years resolution have a word or phrase to help get yourself through the year. A term that will help motivate you when you’re sitting there wondering what the heck to do. Last year I used the word ‘create’. This year I decided to go with two words: ‘start’ and ‘finish’. I chose them because I’m fairly good at starting projects and abandoning them when they get too hard or I find something else interesting. So whenever I have a time where I honestly don’t know what to do with myself I will think of everything I want to do and everything I have already started. There’s quite a few things so I don’t think I should be too bored in 2014.

I’m starting to get really excited for my spring trip around the Midwest on a tornado tour. Still need to finish paying for the trip and getting my plane ticket to get down to Oklahoma. I plan on documenting the trip and sharing my adventures on here.

I found out about a wonderful project where artists create postcard size art and they have exhibits to sell them for charity. Each year they pick a specific group and the money goes to them. Check them out here http://twitterartexhibit.org In anticipation of my tornado trip I made a piece of a very green supercell on the plains. I really hope I get to see something like this out there.

20140201-155712.jpg

The reason for the title of this post is that I have recently found out that I have cataracts in both eyes. I knew about my left eye but the right one is new. I know my vision has been blurry and out of focus for a while but I thought it was due to old prescription glasses. Well, I’m still quite sure that’s part of it, but the cataracts explain the rest. My retina specialist passed away and I started with another doctor who found the other cataract. He is suggesting that I get surgery. I’m not a fan of the idea but I know it will help my vision to improve. So, I will be calling my optometrist to get a recommendation for a surgeon.

It’s never a dull moment thanks to these blobs of goo in my head.

Oh! Oh! I almost forgot to mention! I finally finished my big Braille transcription for certification. I sent it in last weekend and they have acknowledged its arrival. They said it will take 6-8 weeks to find out the results. Fingers crossed for better than an 80!

Now I’m off to park my rear in front of the tv and work on the hat I’m knitting for my mom.

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.

Vision-Loss Outlaw

December 23, 2011 at 9:26 PM | Posted in EYE believe | Leave a comment
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I am not blind. I am not even legally blind. I’m slowly getting close, but I have just a little too much left in the outfield of my vision range. I am constantly getting different medicines to keep the fluid build up in my retinas at bay. My Retinitis Pigmentosa is not only taking away my peripheral thanks to the actual pigmentation of my retinas, but it is also causing blood vessels to fail and that is the fluid build up. This  is called Macular Edema.  Now, I’m pretty sure I’ve mentioned all this before and if you saw an earlier post you saw how awful my field of vision is thanks to these problems.

I have a very hard time seeing things right in front of me and also things far away. If I know there is a pole or wall in a certain spot I am able to use muscle memory to avoid them. If I am unfamiliar with the location of these items or the territory itself is new and/or different I will walk into these things. I will bump my cart into people, I will walk into signs, I will hit my shoulder/hip/foot/arm on any number of objects.

I still am not legally blind.

I recently have been thinking about getting that tell-tale sign of vision-loss: the white cane. Just for the times I am not confident of my surroundings. Whether a night out with friends, or visiting a new city, or even getting used to a new job, I thought this would be helpful. I’ve been doing some internet searches on people’s opinions of when it is time to get that white cane of freedom and safety. Almost every one of the stories I read were from people who are legally blind. I happened upon a thread that mentioned the law and to check local laws about use of a white cane.

I did this for my state. Apparently in Nebraska it is a Class III Misdemeanor to use a white cane if you are not legally blind.

Here is the website to read the statute: Click me

If I get a typical white cane I will roam the streets in fear knowing at any moment I could be taken down by a vicious hoard of swat teams.

I may just get a regular cane, or use my golf umbrella, or better yet I can get a big walking staff like Gandalf.

Where there is light, there is always dark.

March 8, 2011 at 11:01 PM | Posted in Uncategorized | Leave a comment
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Still thankful for what I do have in the vision department (and of course everything else I have in life), but there also comes with it the dark side of things. Both the physical darkness and the soul’s darkness.

Not every day is wonderful.

I almost want to leave it at that last sentence. I can look at those 5 simple words and contemplate how everything is fully described by them.

Not every moment is wonderful.

Sometimes I can be happily going about my business; making dinner, reading a book, or even just walking, when I am hit by a wall. Realization of how difficult these things are to me now and how much I am straining. I have to stop in my tracks and take a breath. I have moments (such like right now) where my eyes fill up threatening a torrent of tears. This usually makes things worse as it blurs the already spotty view.

The despair, the fear, the loss is always on the tip of my heart and I feel it may go over the edge at any moment.

I want to go into a whiny rant about everything that I despair about, everything I fear in this world, and everything I am losing. I just don’t have the energy for it. I don’t have the energy for the sorrow or for the pity.

I just want to say that everyday is not sunshine and fluffy bunnies.

However, these dark clouds can be a comfort.

Plus, how else can I enjoy the good days if I don’t know the bad?

What I can see-a Thanksgiving

February 22, 2011 at 3:51 PM | Posted in EYE believe, Giving thanks | Leave a comment
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It once again has been a while, hasn’t it?

I have been keeping busy with schoolwork and other such things, (mainly immersing myself in games that suck up too much time.)

My eyesight is still there and instead of lamenting what I am now unable to see I decided to be thankful for what I can see. I have started seeing a therapist and it has been wonderful. I have finally been able to say things that I have held for a long time and I feel cleansed every time I leave there. This last time I decided, seeing as it was a beautiful (fake) spring day, I would walk home. It is a lengthy walk but I am no stranger to long walks. This was my first walk in the area since we moved to this new apartment.

The sun was shining in a delightful way, not the harsh, cold orb it can be in the Winter. The temperature was eradicating the piles of snow everywhere. There was a cool breeze without a hint of ice on it and it was wonderful. As I walked and took in my surroundings I suddenly became humbled and thankful for all the marvelous things the Lady grants me to see on a daily basis. I am still able to see the glorious trees and without their leaves I can see their symmetry. Their branches harmoniously reaching out to the side and then to the sky as they go up the trunk so that every leaf once they come out will have access to the life-giving sun. The pine cones of the fir trees strewn around indiscriminately on the grass, the street, the sidewalk, hoping they might one day become as grand as the firs they came from.

The pools of now-liquid snow on the asphalt of a tennis court, slowly being taken back into the sky to be rained down on a different location on the globe.

Cracks in the sidewalk created by the earth shifting herself underneath the burden. Red-capped yellow fire hydrants placed like sentinels ready to protect the surrounding homes at a moments notice. Battered by the elements in their lifetime of servitude. Randomly strewn pieces of wrappers and garbage along the grass or in fences, whether dropped on purpose or taken from their receptacles by the wind.

Last year’s leaves hung on with determination on some trees. Withered, brown and making a soft papery sound in the wind. I could see their fragility as I walked by with their holes and tears. Their doomed hold will be over when the new buds push them out of the way when the true Spring comes.

Metal beasts of combustion moving along the river of asphalt containing fellow humans to some errand or another. The sunlight betrays the need for the beasts to meet clean water and soap. Salt left behind from the now gone snow crunching beneath the tires as they roll by.

The chain link fences shining in their dull weathered fashion showing someone who wants to keep others out or in while still allowing the Lady’s breath of air and gift of light move through freely. Spotting a happy, frolicking golden-brown dog and joining in the sentiment of joy for the day.

The other people taking advantage of the weather out in their driveways working on their cars or gardens. Students enjoying a break outside of the beauty school with their work aprons still on. The busy main street with cars whizzing by, slowing down to let this pedestrian cross unscathed.

I may not be able to see the details of everything in this beautiful world but I can still see the whole of things. Carl Sagan said, “The beauty of a living thing is not the atoms that go into it, but the way those atoms are put together.” Yes, I do miss seeing with my left eye the little scratches, the little patches of color, the shadows of texture, the crisp recognizable letters on a page. I can still see many of these things with my right eye, thankfully. However, I can still appreciate the whole thing without the tiny details. A tree’s shape is a beautiful thing to see, without concerning yourself with what the bark looks like.

It’s just as to why you love another person. Love is not based on the tiny hairs on an arm, the freckle on a shoulder, a wrinkle on a knuckle, or how many limbs you even have. You love the whole package, how all those tiny things have come together to be that person.

I will be sad when the sight finally leaves me, but I will have all these wonderful memories of everything the Lady has allowed me to see for so many years. Thank you.

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