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.

 

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3 Comments »

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  1. Reblogged this on Like I See Them and commented:
    Perfect for anyone going through a major physical change.

  2. Perfect. Preach it, sister. Reblogged on http://likeiseethem.wordpress.com/

  3. “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.”

    You know. All the way through reading this, this is pretty much exactly what I was planning to write to you. Perhaps slightly different words (so, don’t sue me for plagiarism lol), but pretty much identical sentiment.

    I would call myself lucky in that I’ve learnt from a young age to be ’emotionally independent’. What that means is, i cry when i freaking FEEL like crying. Sometimes I don’t even have a reason, but I can tell myself this is valid. I’m allowed to. I feel like crap for unknown X amount of reasons, and its my right to cry myself to sleep like an abandoned baby.

    I allow myself to feel miserable when I need to. If I waste an entire day ‘doing nothing’ because I just don’t have it in me to bump into furniture, follow up doctors appointments, research those cool low vision sunglasses I’ve been wondering about, SO BE IT. Generally, yes I’ll feel miserable or guilty about supposedly wasting my day. But often, the following day feels a lot more livable. As humans, we need to allow ourselves our grievances. Society tells us we shouldn’t. That we’re being spoiled, bratty, childish, demanding, entitled, etc. Oh really. Society should try coping with the mess that a disability can inflict, especially those that are sudden or late onset, after having lived a ‘normal’ life.

    Most people just won’t get it until it happens to them. People can claim they know how to walk in others’ shoes, but it’s a whole different thing to ACTUALLY do so.

    Hang in there. There are more of us ‘out here’ 😉


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