The words of a petulant child

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

I felt physically ill.

I cried a lot. 

Over my own hurt and self-pity.

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

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

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

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

And so I am tired.

And sometimes numb.

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

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

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

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

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

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

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

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

The Inbetween Space

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

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

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

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

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

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

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

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

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

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

How fucking exciting is that?

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

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

With skills.

Not with my emotions.

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

My fear is valid.

I am allowed to have this fear.

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

Some say my heart grew three times that day.

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

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

I’m torn.

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

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

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

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

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

Why am I not valid?

Why am I being erased?

Am I taking things to personally?

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

Of course I take it personally.

This is who I am.

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

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

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

Color.
Facial expressions.
Clouds.

These are the things I will miss the most.

But why am I not allowed to feel this way?

Why am I not allowed to hope for a cure?

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

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

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

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

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

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

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

Life in the Shade

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

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

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

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

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

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

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

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

This is incredibly mentally and physically and emotionally challenging.

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

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

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

 

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

Gotta keep on keeping on.

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

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

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

I am not a UPS package needing to be delivered.

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

I deserve that respect as much as you do.

 

Adventure Time

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

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

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

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

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

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

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

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

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

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

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

My upcoming adventure is going to be quite interesting.

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

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

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

IMG_1019

“Zipper” 12″ by 12″

 

With White Cane Comes Gray Responsibilities

October 6, 2015 at 10:38 AM | Posted in EYE believe | 2 Comments
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I now don’t go anywhere from the house without my white cane. I realized I really needed it while walking up a hill with it. I had looked straight ahead and couldn’t see the tip of the cane, not even up a hill. That was quite a large area that could be filled with hazards at any given moment. I clearly needed the assistance. 

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

I can still see all of the stares. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

When it rains, it pours and there are many clouds.

May 26, 2014 at 7:05 AM | Posted in Artsy Fartsy, Despair, EYE believe | Leave a comment
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It is pretty wonderful being able to sit here and type this. Being able to see the screen without blurriness or strain is more wonderful than I ever thought possible.

At the end of March and a week later in April I had one of the most routine surgeries one can get to improve their vision. I had cataract surgery in both eyes. It was two pretty easy and quick surgeries but the month afterward was hell for me. I was not blind from my cataracts. They contributed to my night-blindness (my RP is the main culprit for night-blindness) and may have been contributing to fuzziness during the day time. It’s hard to say if it was really doing that because I’m missing so many areas of my vision that I’m never sure if that’s a blurry area because of a cataract or because that’s a section my brain is making up.
Either way, my new retina specialist recommended I get the surgery. It makes sense. If it is an easy procedure and they will only get worse with time, why not clear up my vision now.
I say it was hell afterwards because I could hardly see after the surgery. Everything was getting more and more blurry as my old glasses failed to help with the new mono-focal lenses in my eyes. I could see far away without it being blurry but close up is gone. It’s a watercolor painting that someone spilled more water on top. Nothing came into focus from arm’s length closer. I had been warned that I would have the eyes of a 40-50 year old and would need to compensate for the loss with those readers you can buy at a pharmacy. I did buy a pair but it was hardly help. Those kind of glasses do not take into account if you have an astigmatism so everything was a strain.
I no longer could focus on my computer screen at work. I had to put on the readers and get close to the screen to figure out what I was doing. I hated every single day of it. I counted down until I was allowed to go in for a new prescription for new glasses. You have to wait a month after your last surgery to make sure everything is settled and looking good to the eye doctor before you can go for the new Rx.
I thought the day would never come. I thought I was doomed to strain to see anything if I could see anything at all. I was in a big ball of self-pity and despair.
This really hit home the fact that some day I will actually be blind and there won’t be a countdown until a day that I will see again. There are so many advances in science and technology that I had brushed off the thought of final blindness and forgot.
I am deeply afraid of being blind. The helplessness and frustration and the general lost feelings were terrible. I don’t want to feel them again. But I have to remember that I will someday. I have to be ready for it. I need to prepare.
But how does one prepare for such a thing?
You can sit and watch a friend or family member on their death bed and know it is coming but it does not prepare you for the actual death. Your mind and heart are still shocked from the loss.
I could prepare by learning skills one needs to use to get around when blind. Tips and tricks to identify your clothing. Equipment to read and write in braille. Equipment to keep yourself connected to the world via the internet. How to use the infamous white cane.
The skills needed are really best learned when sight is mostly if not already gone. The equipment is expensive and will be outdated by the time i need it. All of these things would make me feel like an imposter. Like I am cosplaying a blind person. Like I am taking equipment away from those that need it now.
What do you do?

I think all I can do is wait. That and keep the knowledge that it IS going to happen one day prominently placed on my brain’s cork board of important things to remember.
Until that day comes I also need to remember to keep living. It is extremely difficult not to wallow in despair knowing that watered-down watercolors with giant areas made up by my brain is on the horizon. For too many years I have done this and have avoided or given up on art and creating. I’d make things here and there as gifts but never seriously. I think it’s time to fix that. I think I am now in a race with my failing vision. I’m going to take its looming figure as a challenge. It’ll see how many things I can create until it rears its ugly head.

I now have new glasses, those snazzy progressives that have three different strengths but without lines. They are pretty difficult to deal with for my computer at work. The area for that distance is kind of small but I just need to learn to move my head and not just my eyes to see everything. It is wonderful to read again. Having my eyesight corrected made me feel elated for a while but now I’m back to being very aware of how much the RP has taken from my field of vision. It’s a constant battle against self-pity and depression. (Add medication for treating endometriosis which makes your body basically act like menopause, now there’s a recipe for “fun”.)

I have never needed a vacation more than the one I will be going on in 5 days. I have a heck of a beasty for a camera that was a gift from my husband and father-in-law. I now have the Canon Rebel T5i Digital SLR. It has quite the thick book of instructions. Time for me to get reading! Prepare for many pictures of the skies over the Midwest and blog posts about my two week adventure on a tornado tour! Fingers crossed for amazing weather viewing.

Click here to read an article about how cataract surgery is curing blindness in developing countries.

Click here for a great documentary for National Geographic with the same doctor in the above article in North Korea. They were allowed in to perform eye surgery.

Click here for information about cataracts and treatment from the National Eye Institute.

Click here for a fact sheet from Womenshealth.gov about endometriosis.

On Tuesday, my birthday, we get to take my mom in for her to get cataract surgery. Luckily she only needs the one eye done right now. I could have sugar coated the after-effects but I didn’t. I flat out told her it was going to suck. However I did tell her it was an amazingly comfortable surgery. They don’t put you fully under, just give you some amazing anti-anxiety dopey meds. I felt pretty uncaring during the surgery. The first one I was mostly aware but I didn’t care what was happening. The second one I think I had a bit more juice so I’m pretty sure I fell asleep. I know I passed out in the car on the way home. My stomach took over once I got home and manipulated my arm, hand and mouth to eat. Then back to being passed out for the rest of the day.
I hope her surgery will be the smoothest of all.

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.

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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.

It’s Okay.

March 19, 2013 at 10:46 PM | Posted in Change the World, Despair, EYE believe | 2 Comments
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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.

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Sunset from a while ago

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