A month in

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

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

I would be super rich.

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

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

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

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

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

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

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

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

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

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

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

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

 

Life in the Shade

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

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

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

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

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

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

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

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

This is incredibly mentally and physically and emotionally challenging.

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

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

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

 

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

Gotta keep on keeping on.

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

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

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

I am not a UPS package needing to be delivered.

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

I deserve that respect as much as you do.

 

Adventure Time

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

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

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

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

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

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

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

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

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

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

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

My upcoming adventure is going to be quite interesting.

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

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

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

IMG_1019

“Zipper” 12″ by 12″

 

With White Cane Comes Gray Responsibilities

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

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

I can still see all of the stares. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Who Arted?

December 3, 2014 at 8:31 PM | Posted in Artsy Fartsy, Change the World | 1 Comment
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I finally finished my second attempt at my braille transcription for certification. It’s mailed in and now I get to wait.

Actually what I’ve found is a great weight lifted and I can breathe a bit better. I’ve been able work on some paintings finally. I have two that I’m currently working on but I have put them aside as they are at stages I don’t have supplies for or don’t want to work on it.

I started this piece because I sit at home all day reading online about the protests across the country in response to the injustice of the American “justice” system towards black people. It makes me sick that victims are not even getting a chance for justice. I wanted to make something simple, because it should be something simple. Treat everyone like the humans that we all are.

Five hands of different colors reaching up towards images of love, peace, equality and the world.

Hands Up

“Hands Up” 12″ x 24″ acrylic on canvas

Here are a couple detail shots.

2014-12-02 14.08.542014-12-02 14.08.59

I’d love to sell this and donate to the Ferguson Library (Here). Comment if you’re interested.

Another thing I am doing is trying to not waste the leftover paint I have when I’m done with a painting and trying to create something else with it. I finished this one yesterday. it’s a landscape of another planet with advanced civilization, Nice orange sky with three light blue moons. A silhouette of a futuristic domed city with a tower. I really like how this turned out and I’m going to try to do random other world scenes with my leftover paint.

"Orange Sky" 8" x 11" acrylic on canvas board

“Orange Sky”
8″ x 10″
acrylic on canvas board

For those that follow me on twitter you already saw this next one. I was inspired by a title of a song by Disparition (Check them out here.) Their song titles can be so specific and descriptive that I wanted to make a few just based on the song titles. Here’s one based off of the song title “The People Who Carry Their Forest Around With Them”. I’m finding that I’m more of a literal painter, as much as I would like to be more abstract, I just can’t not make a thing a thing.

I can however exaggerate facial features and skin color. Three green skinned figures each carrying a large tree on their backs with a background of birch trees.

11" by 14" acrylic on canvas board

11″ by 14″
acrylic on canvas board

My style seems to be all over the place as I’m doing what I should have done right after college. I got scared of and lazy with the art process so I didn’t spend that time figuring out a direction to go in. That’s what I get to do now.

Outdoor Adventure

November 4, 2014 at 9:08 PM | Posted in Blah Blah Blah | Leave a comment
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I’m nearing the end of my second attempt at my final braille transcription. I’m into the proofreading stage and am nearly done with the second run through. Something finally clicked in my brain over the weekend and its about damn time. Since I quit my job at the library in July I have been in a funk. I have been able to work on the final transcription and start and finish a few paintings. However, things didn’t feel right. Then the click happened. I realized I had been acting like I was at home sick from work for three months. I have so much time to do things that I need to do but I let TV, video games and other things distract me. TV shows will be there for me whenever I have time, it’s not imperative that I keep up with anything.

Anyway, so I started powering through this proofread. Today I decided I needed to get outside and do a little exercise. I decided on a walk to the store with the goal of getting some cheap Halloween candy. (Have to make up for that initial walk.)

Normally I enjoy walks but boy, today sure wanted me to be full of snark.

Some jackass in a pickup truck was zooming around the neighborhood making sure he squealed around every corner. Must be nice to have so few cares in the world to spend that time being an asshole.

Guys, please remember to maintain your sidewalks. It’s not the city’s job, it’s yours. I don’t have a sidewalk in front of my house, but I would make sure it was well maintained. Too many people had severely wrecked sidewalks that threatened to break each of my ankles many times over.

Someone needs to learn how to use electrical tape. You’re supposed to cut it when you’re done, not unravel the rest of the roll and leave it to hang.

Photo Nov 04, 4 03 46 PM

 

These wires on this power pole are hanging down so far that kids could grab them. I’m not sure that’s a good idea.

Photo Nov 04, 4 00 13 PM

 

These markings are all over a section of the sidewalk, I’m sure it’s something to do with what is underneath but I only see the Japanese Kanji for ‘mountain’. In my head the city planners are going to turn this sidewalk into one heck of a mountain range.

Photo Nov 04, 4 01 24 PM

 

Four high school boys walked by me and as soon as they passed me one yelled back at me something that sounded like “You look like Ellen DeGeneres, Bitch.” I think he needs to read what both compliment and insult mean in the dictionary.  Also I think he needs to take a better look at Ellen, and think about getting his eyes checked. I’m completely taking this as a compliment. We just so happen to both have short hair. I however, weigh about four or five Ellen’s. Also she is a hilarious and wealthy woman with a steady job and can find work at any time. She also is in a committed and loving relationship. Not a bad person to be compared to, I think. I also think I’m going to stop weighing myself in pounds, I’ll just use Ellen as a measurement.

So, I’d just like to say, thank you world, for making me appreciate my home and not be guilty about my love for hardly leaving the house during the week.

Also, it tells you how infrequently I leave my home for something other than a doctor appointment if this is the kind of thing that bothers me.

The Little Things Add Up

September 20, 2014 at 4:54 PM | Posted in Blah Blah Blah, Despair | 3 Comments
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Today is an angry day. I’m angry at everything. I’m so angry that I can’t physically speak about why I am angry. So I will list them here so I can at least get them out of my head for a little bit.
I’m angry because I didn’t work on any art today.
Because my left hand smells like onions since yesterday.
Because it’s September and still hot like summer.
Because I can’t get this anger out.
I’m angry because I don’t know if this is real anger or side effects from the Lupron Depot injections.
I’m angry because there are so many dishes and no dishwasher soap.
Because anything I want to eat in this house requires me to cook it.
Because I am cooped up in this house because there is no eras on for me to leave it. My art isn’t exactly portable and no one wants to hear a consistent pop pop pop of Braille at the library. Because it takes half an hour to an hour to get anywhere by bus plus that coming back that I may as well stay home.
I’m angry that I don’t have all the ingredients to make anything from my cookbooks and can’t get them.
I’m angry that I’m no longer bringing home a paycheck which turns out to be precisely what we used for anything more than bills.
I’m angry that I cry when I’m angry.
I hate putting drops in my eyes four times a day because they sting and I’m feeling very controlled by the scheduling of them.
I’m angry that mosquitoes are still biting me.
I’m angry that I feel like I can’t say anything negative because I don’t want to bring anyone else down even though I am not responsible for anyone else’s feelings.
I’m angry that my hair is getting long and I can’t afford a hair cut, or color so I’m stuck with mostly my natural hair color and a tacky severely faded pink.
I’m angry that I keep snapping at my husband when he’s trying to say anything to me and that I’m making an awkward and uncomfortable environment for him.
I’m angry that I feel inferior to most people around me due to education level and monetary status.
I’m angry at my laziness.
I’m angry at the voice in my head that tells me to get over myself using the voices of people I know.
I’m angry that the font size on the main screen of my kindle can’t be changed so I have a hard time reading it.
On any other day I find it cute but today I’m angry that my cats find it necessary to be in the same room as me.
I’m angry at he sun and how bright it is.
I’m angry at my 12 years of neglecting art and therefore am without those 12 years of practice.
I’m angry with myself for not being able to cope with the little things.

That seemed to at least have eased the giant knot of black anger in my chest but it’s still there. Little by little it should go away. Or my hopes are it will have pissed off by the morning.

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.

 

The Final Few

June 19, 2014 at 9:40 PM | Posted in Storm Chasing Vacation 2014 | Leave a comment
Tags: , , , , , ,

So I’ve been home for few days from my trip and I’ve finally had time to sit down and write about the last few days of my trip.

Thursday was our last chase day in Texas. We waited quite a while for storms to begin. After what felt like several humid and hot hours in a gas station parking lot storms finally erupted. The one we followed seemed to move decently fast, we had to move many times to keep out in front of the rain and hail, it really kicked up the dry dust and dirt.

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Always fun to have a scary looking cloud right above a kiosk of combustibles.

We chased around this storm waiting for it to get some sort of consistent rotation. It had plenty of lowering but then it would fall apart, so no tornadoes on this one for us. As we were chasing we found many a dead zone to not only our data service but to our phone service as well. It was a Verizon free zone. Without data we couldn’t keep our radar updated so Charles had to use his skills to figure out which was the safe route, keeping us out of the hail. We kept driving for a while trying to find someplace to shelter the vehicle from the oncoming storm. There was what looked like a town on the map but was really an abandoned looking neighborhood but no where that could be cover. So we kept driving.
Finally we entered a larger town and there was a store with some carport-like structures out front. I think it was an auto electronics store. We sat there watching the sun set as the storm rolled into town. It was gorgeous, made everything look orange.

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The storm blew in a lot of dirt with its first gust and we tumbled back into the van for a bit. The rain and hail came down, thankfully the hail was not very big. A couple of cars came and went behind us under the other part of the shelter during some of the rougher patches of the storm.

After the sun set and the rain passed us we were given a nice lightning show. It was difficult to capture of course. Also mine were shot through a window because we didn’t want to get out of the car.

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We finally pulled into Brownwood, TX for the night. We found a diner that was still open at 10pm and found there was a hotel next door. (Where I had my decision to wait to the last minute to pack in the morning teach me a lesson because I left my childhood blanket there. Yes, I’m 34 and have a blankie. The hotel said they found it and said they would send it out on Monday. I should call them to make sure…)

The next day was a long day of traveling to get into position for Saturday’s final chase. We travelled from Brownwood, TX to Woodword, OK. Then on Saturday morning we headed up towards Phillipsburg, KS to wait for some storms.
Charles picked a great spot, after a short time waiting, little white clouds started popping up out of nowhere above us. Quickly building into large puffy clouds that started to make towers. We watched a lovely storm take place with a fellow chaser until it was decided to go get to a better viewing position for the storm as it looked like it was getting ready to rotate.
Sure enough a tornado was reported by the other chaser who was on the other side of the storm from us. We looked closer and saw the circulation on the ground. It was difficult to see because we had the rain in front of it. We zoomed toward it and we tried taking pictures as we drove but it was so difficult to see. We lost it behind a hill which we soon found out was a dam that we had to get up and over. By the time we got to a good spot the rain had filled in and we couldn’t tell if the tornado was still in progress.
This is the best picture I took of the tornado. It’s circled so you can see it.

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One nice thing is I played with some filters on my iPad and the Noir filter really brought out some detail.

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If you’d like to see what the tornado looked like behind the rain go to Daniel Shaw’s twitter @DanielShawAu

As far as we saw that storm did not produce again, but it tried on several occasions. Later it had some magnificent structure, that looked just plain bizarre to me.

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As the sun was setting, and we had a 5 hour drive back to Norman, OK still that night, we decided to let the storm go.
I collapsed into my hotel room at 3am,

The next day I flew home. I had a wonderful experience, and I’m quite sure I will be going again. However, it was magnificent to be back home with my husband and my cats.

The next day, Monday, there was amazing and terrifying tornados that went through to the north of Nebraska. I was antsy watching a live stream. I felt weird not going and chasing. The storm that ravaged Pilger, NE spawned 4 tornadoes. It is estimated they were all EF4s. The footage is astounding, if you haven’t seen it, search for it. There were two extremely large tornados right next to each other.
The next night, big tornados ripped through counties north of Pilger and farms and homes were damaged.
The next night big tornados ripped through a South Dakota town.
This is a horrible time for so many people in those towns.
Please consider giving to the Red Cross, or volunteering your time in the clean-up effort.

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