The Eye Thing - My experience with keratoconus

I wrote this originally in Finnish last spring during a crowdfunding campaign. I decided to do some editing, translate it to English and share it with you here on Steemit today. Please note that I’m not a medical professional and if you have any problems with your eyes you should consult a doctor and not take my writing for advice. It’s just my experience. Also it may be a little sad. Won’t a good warning label make everything more enjoyable?

When you have a medical condition, you may want to hide it from others. Or perhaps you want to share it with everyone all the time, this may be one of those. I wish this wouldn’t affect the way people look at my art. But at the same time it does influence my work and is pretty significant issue for me. It can open up some of my work and why I have certain ways of doing stuff. I’ve had a problem before with the idea, that art gets better the more you know about it – or I would be afraid that I could explain it to death. There are certainly things in life that you have to know certain things about, before you can enjoy them. Like hockey or any sports, it helps to know the goal and rules of the game. I am not into sports much by the way, the world cup was just on at the time. I am writing this to create attention and awareness to the disease, in other words purely exploiting it for my campaign.

I am talking about a fairly rare condition called keratoconus. It is estimated that it affects about 1:500 to 1:2000 people. The structure of the cornea weakens by which it begins to bulge into a conical shape, which will naturally lead to problems with vision; blurriness, astigmatism, ghost vision. Keratoconus does not affect the nerve so there is no actual blindness. The causes of keratoconus are pretty much unknown. It is most likely result of several factors in the cellular level, environment or genetics which cause it to progress. It can be linked back to atopic diseases like asthma or allergies.

There are few treatments available for keratoconus. The progression of it can be stopped with corneal crosslinking procedure or cxl, where the surface of the cornea is scraped over and riboflavin is dropped into the cornea which is then hardened with ultraviolet light, strengthening the structure of the cornea. The shape of the cornea can be sometimes be corrected with intacs, which are two half-ring shaped implants placed inside the cornea. I’ve had both operations done to my left eye and there was minimal improvement in vision in that eye, though I can barely notice it myself.
In worst cases the cornea can be replaced from organ donor. The sight can be sometimes be improved with glasses or contact lenses. There are hard and soft ones and they can used together, which is referred to as piggybacking.

I have always had really good eyesight and in some ways I still like to think so, although technically it is incorrect. I mentioned in another post about going to an adult college before art school, which is where I started to do oil painting properly. I was introduced a way to sketch out work with thin paint, but it became my main attraction. My main teacher there had a specific style development and I took a lot of influence from him a lot. You could splash the paint thinned heavily with turpentine and it would drip all over the work and for me it wouldn’t matter. Naturally I went sort of overboard with it. There is a lot you can do with paint. It complimented my world view perfectly and this slowly degrading vision.

I would notice my eyes getting tired after a while, but then I just adjusted to the speed. I started a lot of paintings and there were a lot I didn’t finish; probably for not wanting to face the discomfort. I did try all sorts of vitamins and other supplements, if they would help with the strain. There were blueberry extracts and what not. I did not assume it was anything serious back then. I didn’t have a driving license so I didn’t have to have my eyes examined since army conscription.

After the college year I went to art school. During the second year I started to notice my eyes get really watery outside sometimes, like if there was a little bit of wind. I also noticed the other eye getting a little bit blurry. Think I’ve always had a little trouble staying on lines and skipping words when I was reading but it had become more difficult.

I of the storm, oil on canvas,2010.

Now I did not go to have them checked then, although I was glaring at those advertisements that offered free checkups at the optician. There was an idea in my head that it is normal for eyesight to degrade a little bit when you get older, so nothing abnormal. I started to work with ink along with oil painting, it was nice alteration while I would let the paintings dry. I noticed that drawing would tire out my eyes quickly though. I figured my eyes just needed the exercise because I had been doing such broad work lately. So I would work until I they would get sore and i could barely see anymore. After I graduated I didn’t draw a lot for few years.

It was around 2013-2014 that I finally decided to go see a doctor about it. I had started to draw again and I got an exhibition time at this gallery window gallery in Helsinki I was doing regular a4 sized drawings, but they asked me to do larger. I wasn’t exactly prepared to that but all right let’s do it, I thought. Drawings would be about 50x70cm size. So I would get used to the pace, I would draw about 3 or 4 hours straight have a break and do another set.
Meditation was a big deal for me at the time and suited well with the drawing. I watched these videos from this monk Yuttadhammo in YouTube. In one video he had a story about a monk that was losing his sight. He liked to meditate a lot like monks like to do, I guess. But he had seen a doctor who told him not to meditate, just lie down and take his medicine and he would get better. That wouldn’t pass so the monk took and meditated till he got blind and enlightened at the same time. So that resonated deep within and inspired my work. Things happen and you don’t want to escape or keep feeling sorry for yourself over them, which can be difficult sometimes.

ink on paper from series arpakudosta / random tissue 2014

The exhibition came and went, like they do. I had received time to hospital where they would take pictures of the eye, study the topography. I asked about the intacs option which was a relatively new thing. I had heard that it might improve the vision a little bit. The thickness of my cornea was suitable for it but they didn’t perform the operation in this city. I got sent to the hospital in Helsinki where they would perform it after a few checkups. It was fairly quick operation, only took about 10 minutes. Eyes were somewhat sore afterwards and sensitive to the light. I was excited to have my first cyborg-part. Next up would be the corneal crosslinking operation some months away.
That one was a longer operation, think it took about 30 minutes to an hour. It went pretty easy, considering what was happening. Of course there are anesthetics to take care of that. So first they would drop some on the eye, and proceed to scrape the surface of the cornea open. You of course get to watch the doctor scraping that thing up and down. it looked a bit like a windshield wiper I guess. Then she would drop the riboflavin, every 5 minutes or so till it was time to harden it with the UV light.

Intacs are barely noticeable in normal light

I was released and the pain would come against the night. I’ve not experience anything like that. Maybe in the beginning of a root canal treatment you are somewhere in the same solar system. But this was something unforgiving. The meditation stuff would come to use now. You could not sleep, all you could do was sit on the bed and not look at things. If you reacted to the pain anyway, it would get worse. It took few days to ease and in about week it would be tolerable.

That was luckily only the left eye. After few years of checkups there has not been a progress so I am clear for now. The sight did improve a little, but still not enough to read with it alone for example. I was cleared to get glasses but I didn’t get them. They can be expensive and I wouldn’t want the hassle of them or contacts either. Actually I am pretty happy with my sight. There is a painter called Alex Garant who does these figures with many eyes. That is sort of what the other eye sees, while the other eye is perfectly sharp, so there are interesting things happening with the depth of view. I like to observe thins a lot as I walk outside. At nights the street lights leave strange halos and regular airplane can be elevated to an alien spaceship like from Encounter of a third kind. Even though the sight of first snow can be painful, there is something beautiful about the situation. There is an old Finnish song about troll and a ray of sunlight which is very relatable in many ways. I am wondering if I could take it so well if the other eye would go to that state as well. I couldn’t draw like that or enjoy the smallest details of a painting. I hope I get to paint and draw until the end of my time. Then you think of people like Chuck Close who just keeps on banging even after being paralyzed. There is a lot that can happen in life and this is not the worst thing, but it is something people have to go through and deal with. So I thought it may deserve some attention. No crying in market, like my grandpa used to say. Ok, maybe I cried a little just there over that song, but that is not what the saying is about. You take your experience and make art of it.

Mikko Lyytinen
Visual Artist

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http://www.keratoconus.com/
http://eyewiki.aao.org/Keratoconus
https://en.wikipedia.org/wiki/Keratoconus