Hello all,

So you know how I mentioned in that last post how the stability of the current phase and the rapidity of the next phase is a new fact that is freaking me out more than I would like to admit???? I am FREAKING out.

I really try not to, but I am not coping well. My vision expectancy (I mean the one I imagine and adjust all the time, primarily based on how I am feeling, i.e. it shrinks when I am scared, grows when I am hopeful) is less than 5 years right now. I am imagining the worst.

Everything I am doing now seems pointless and crazy.

I just want to go to Iceland and see the northern lights.. Why Iceland? Well,they awesomely speak a very old version of Norse, and I am mostly Norwegian in that annoying way that Americans are a thing, but not really. It makes me love the show “Vikings” on the History channel a lot too much. I actually, seriously consider naming my hypothetical daughter Dagmar, after my great grandmother. I know it is a horrible name in English. But still, even if I don’t name her Dagmar, I will probably still call her that.

And that tangent brings me to a HUGE part of what is contributing to my freakout. Kids. I want them. I am at a fuck-it-all place and I just don’t care. Kids now! Kids yesterday! Kids while I can still see them! Certainly by the time they are my age they will already be cured. So even if I am blind they won’t be. So there is that.

And hand in hand with the kid equation is work. My husband and I need to keep having monies for the kids… and my husband insists that I have a full-time job before we have kids, because insurance is expensive and super important to have when you are going to play host to a human fetus that you will eventually need to push out of your lady bits or have removed surgically. How could I ever consider kids with an attitude like that? I am honestly not sure. I want kids that bad. I am under zero delusions.

But how will I be full-time and what will I do and what career should I pursue? This is the other huge part of my freak out. I am torn between trying to paint more, while I can see, and trying to make a lasting career for myself that I can continue whilst blind. In combination with that already troubling conundrum is the fact that my current career trajectory was set pre-finding out I am going blind, and I think it is no longer a good option. Changing trajectory will mean hashing this all out with my boss, or going back to school. No, actually, it will probably entail both.F. I need to make a new plan all of a sudden, and I am not feeling up to it.

Instead of making new plans I just think about northern lights and babies and burst into tears. I think about horrible statistics I have learned that bother the crap out of me. Did you know blind people have more nightmares than other people on average? That bothers me a lot. But you know what bothers me more??? Imagining that one day I will wake up and wish I was still asleep, because in dreams I can still see. Imagining that on that day, when I lose that last one percent of vision and I can’t continue in the career I have set for myself, I will realize I have totally wasted my last few remaining years of vision on somethings so ridiculous, so petty and frivolous as money and a career. I am freaking out imagining that one day I will say to myself, I wish I had, before I couldn’t, but it is too late and now I can’t.

I try to keep focused on the positives, on the potentials. I think about the awesome and amazing guide dog I might get, or the close community I will develop around me. (I am very aware that no matter how independent I am I will need people around me, literally around me, like walking-distance around me, who I can trust. The need to develop that community is a little bit a part of my freak out as it will be a huge, years-long undertaking, involving classes and community outreach and being actively extrovert on a more regular basis than I am currently all that comfortable with.. but still the net result will be good)

Unfortunately, lately feels like a string of days where I don’t get to choose to be happy.

I find my feelings totally overwhelming, and I can only put them off for so long at a stretch. I feel like I am running from them, always pushing them down, or out of the way, or trying to entertain them temporarily with something shiny, just so I can breathe or go to work or sleep or eat or do any number of real human-being things that one must do every day. I already wake up wishing to still be sleeping. I am wasting my remaining years of sight.

I miss those season paintings. While they were still unfinished I had something to work on, something beautiful and soul nurturing. I felt so sad to finally part with them. The moment that the last one, winter, was in it’s frame I felt as though it was over, and I was never going to be ready for that.

The paintings are very nice in their new home. One of these days I will include “Summer” on a post so that the entire collection is on the blog, but this post is not a summer post.

The immediate to do list:

1. call main doctor and ask for some retina sustaining drugs.. like a prescription for vitamin A, cause my parents don’t trust vitamin cottage.. they saw a news special……

2. call endocrinologist, talk to him about the potential for keeping me slightly hypothyroid-ic (cause I read a thing about hyperthyroidism contributing to faster progression of RP. So, hypothyroidism might be better, I guess, and that is what I am naturally, so maybe I can decrease my dosage a little and see longer.)

3. call that guy at the foundation for the blind and figure out how to open a case.

4. call the lady that the guy referred me to for groups and counseling.

5. Get a kitten (I need a fluffy thing.. it is that or some of those hard drugs they used to give to 1950’s housewives)

Sight-Related Bucket list:

1. Paint more.. so start a painting tomorrow. Anything, just a painting.

2. See the northern lights in Iceland. Husband says it is like 2000 a person for a tour, flights and all such things for a week. Two weeks! I need 2 weeks at the minimum!!! Preferably a few months.. but I don’t think that our life style works with that type of shenanigans anymore.

3. Babies. preferably two babies!

As to the painting: It is related to the comment “don’t think that our life style works with that type of shenanigans anymore. ” We used to be expats. We lived in Chile for a year and in China for three years. It was great. But I missed home. I felt like we could always go back to that lifestyle when we were retirement age. Now I feel like it won’t be an option to just pick up and start a whole new life somewhere else.

I feel like blindness, or even just the idea that I will be blind, is trapping me. I can’t yet imagine the life I will be able to have. I wake up just feeling fucked and then waste my whole day trying to not be here.

This painting is of a bridge on my favorite lake in the world, West Lake in Hangzhou, China. Four feet by two and a half feet. I was inspired by a photograph one of my best friends from high school had taken, when he came to visit me in China. It was a rainy, muggy summer day. The lake was gray and colorless in the haze of clouds and mist. The willows on either side of the bridge, drooping and heavy. Somewhere between the lake and the sky is the horizon, but you can not find it, all muddled in the damp and rain. Even the paint communicates this wetness. If you were to touch it, you would feel the dried rivulets where the paint ran down the canvas to become the image of bent willow trees reaching their boughs to the water. The only definite thing is the bridge, stark and black and solid in silhouette against the pale gray lake and indefinite, ephemeral gray sky. At one time I had considered adding a single figure to the bridge. Some person standing alone and apart with a red umbrella. But I loved the painting as it was, stark and simple, sad and elegant. I knew I would fall in love with the shocking, brilliant red amidst a wash of gray, but not yet, maybe not ever. Maybe that is what I like about this painting, it feels indefinite, unfinished and precarious, like life. Well like life feels like to me, right now, at least.

Take care. I hope you are getting to choose to be happy right now.

❤ [<3 is an emoticon for heart, for the screen readers out there. When I was checking the post for screen readers, NVDA didn’t read it properly.. hence this explanation.]

HEART -Claudette

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