The Eye of the Beholder

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This afternoon I sat weeding my garden, on the verge of tears. This is a strange sentence to contemplate, as I both enjoy gardening and am not known for crying. This also is an abrupt sort of introduction. One might think that during the recent world slowdown that I would find myself online far more, with oodles of time for writing and building this site. However, I have had more on my mind than just the pandemic, have often lacked inspiration, or even recently had too much in too many directions. For the past few weeks I have felt the call to write about a couple different topics, and will hopefully attend to each, but today one flared up as I sniffled over a little patch of dirt. So here I am, and be warned: this may have little to do with anything related to other things on this site. However, I am not a journal sort of person – ironically, writing is not my thing – and at the end of the day, this is a learning experience.

At some undetermined rate, I am losing my eyesight, a fact which has surprised me across corona-time. I had thought I had been experiencing age-related vision issues over the last few years, and was delaying the inevitable trip to get glasses as I have no insurance and a bizarre nose-tickle that cannot tolerate eye wear of any sort. About six months ago – after several months of studying – I had taken the plunge to get internet at home in hopes of finding freelance work online to help support myself and my son. It very accidentally led to the creation of this website, as I initially wanted to play with design so I could learn the ins and outs, but then I realized I have a passion for education at home. This site does not generate an income though, so I have also continued hunting work in my desired field of proofreading. I landed my first job in March. It lasted about a week, a few hours each night, and… I could barely see the screen by the last night, and my eyes wanted to run for the hills. A few weeks later I was reading and randomly started playing with covering one eye, then the other; this was when I found my left eye is shrinking and distorting what it sees.

When in doubt, what do we all do anymore? We Google. That night I did just that and realized I may not have been as fortunate as I’d hoped in my genetic lottery: macular degeneration was listed as a possible cause. I have some family history here. There is Stargardt disease in my family – I had just always understood it to be the juvenile form of macular degeneration. I turned 36 just before my epiphany about my left eye; surely I was out of the woods by now. But no. As I continued to search and read, I learned that although it is typically the juvenile form, it can hit at any point in life. Two eye appointments later, the verdict is in: I have it too.

On the bright side, I have heard, the older-onset variety tends to be slower and less severe. This may be more comforting for someone who hasn’t already watched how fast this disease can progress. Also, I have no idea how long it’s already been toying with my vision. The specialist was optimistic as I still have 20/20 vision in my good eye and only 20/30 in my bad. I am trying to be heartened too. However, I know I now have trouble reading to my son unless conditions are perfect. I know my left eye feels constantly blurry, like when you first wake up and need to blink a few times to see straight. I know it has gotten much worse this spring. I know it when I drive. I know it when I look through just my left eye at a photo of my son and his face is warped. I know it when I need to focus on detail in a project and my eyes ache until I can’t. And I know it when I am trying to weed my damn garden and can’t see the tree for the forest.

I sat there today, unsure of whether I was pulling a vegetable or an intruder. I could see plants, but a specific little sprout was nearly impossible to isolate. I had been working on a paper model of a digital clock so my son could practice telling time, but the focus required while drawing the numbers hurt, so I moved outside for a break. The frustration and sadness when I realized my supposed relief was proving to be equally hard was steep. Two activities in a row that I enjoy – helping him learn and working in the dirt – were proving inaccessible. So where do I go from here? Heck if I know. I was thinking the other day that life is like a baseball game: sometimes you get to pitch, and maybe you can throw a no-hitter and excel. But then you have to switch out and step up to the plate, and life can toss you that proverbial curveball. Can you hit it?

Stargardt disease has no treatment. It can lead to being legally blind as well as color blind. It attacks your central vision, leaving holes akin to sun spots where you simply see nothing – and, as I have, issues like micropsia (where objects appear smaller) and metamorphopsia (where objects are distorted – for instance, words in a sentence seem to be riding a wave). The problem is, there is no timeline. Will I still be able to drive at the end of the year? In five years? Will my son learn to read before I can no longer read all the oddball text arrangements they put in picture books? Will the vision of both eyes become distorted, to where his face will look, as I have read, similar to a Picasso painting?

My brain can barely go there yet. The initial appointment took the air out of me; by the second I was ready and more stoic, yet the little moments creep in, like today. I remind myself: it is not fatal. I am very lucky to have something that still allows me to grow old with my son – and hopefully many grandchildren (or great-grands!). There is so much going on in the world right now that is on a far more epic scale – the civil issues in this country currently are also weighing so heavily on me and vying for brain space, and then there’s all the covid-craziness in the background. In the end, it’s okay. I will be okay. I am thankful to have had three and a half decades of good vision, which have led me down the paths that created the delightful little sidekick whose face I have tattooed on my soul – I’ll see him regardless. Admittedly, I work very badly with the unknown, but this uncertainty may prove an excellent lesson in humility and other character traits I need to build. There will be frustrations and sorrows, but I expect it will not define the coming years. I expect to continue to enjoy life and the company I walk through it with. I just may need a little help gardening.

If you are experiencing vision disturbances of a similar nature, have recently been diagnosed, or want to learn more, here are a few resources:

• Test your vision with the Amsler Grid
• Learn about Stargardt disease at AllAboutVision.com and ProgStar.org
• For more on macular degeneration see Macular.org

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