At 51 years old, I’ve been living with keratoconus for a long time. When I was very young and carefree, I did not have a second thought about my vision other than the fact that I needed to start wearing glasses like everyone else. I never expected when I went in for a routine eye exam, that I would be diagnosed with a progressive eye condition that if left untreated could lead to blindness. However, my keratoconus diagnosis turned out to be somewhat of an unexpected blessing as it has become a part of my identity and now plays a major role in my passion for art. My journey as an artist started years after I was diagnosed, but I wouldn’t have changed my treatment path for anything as it turned me into the person I am today: an artist that is living with keratoconus.
An Unexpected Diagnosis
When I noticed my vision started to decline even when I was wearing glasses, I knew my diagnosis of astigmatism may not be the only issue I was facing with my eyes. When I started to get concerned about my vision issues, I decided to make an appointment with my eye doctor to see if there was anything else going on. What I didn’t expect was to be diagnosed with a progressive eye condition called keratoconus. This was especially terrifying for me because at the time there were not many treatment options available. I had the option to receive corneal transplants or simply use prescription lenses and hope for the best.
20 years ago, getting a corneal transplant was super cool and innovative and my ophthalmologist in New York City was considered a pioneer for his time. However, to me, it was scary to think I was getting donor corneas put in my eyes. But, I soon realized, at the age of 28, that receiving the transplants was the best treatment option for my long-term eye health. Although I was put under anesthesia, I was vaguely aware that the doctor and the medical student were very excited and geeking out to be able to perform the procedure.
Following the corneal transplant procedures, I felt like the psychological aspect of the transplant — of having a foreign organ in your body — was more difficult to cope with than the physical recovery. Luckily for me, my corneas healed without complications and have been stable for the last 22 years. I also try to keep up with my routine eye exams (although not as often as I really should!). However, I do feel a lot of anxiety when it is time for an eye exam, as my eyes are exhausted and still very sensitive to light.
Now, people who are diagnosed with progressive keratoconus are fortunate to have additional treatment options that are less invasive, such as the iLink® FDA-approved cross-linking procedure. Although I am not a candidate, when I looked into cross-linking, I became super excited for people who are newly diagnosed and eligible to receive the treatment. Admittedly, I feel a tiny bit jealous! The iLink® procedure would have been a great option to consider and might have helped me avoid corneal transplants. When it’s all said and done, I am happy with how my treatment path has moved forward.
Finding a Passion and Keratoconus’ Impact on It
I wasn’t always an artist. When my vision issues first started, I was working at a record label and living in New York City. However, two years ago I started painting and it soon became a huge part of my identity. What I didn’t realize was my keratoconus would become present in my art.
It may seem odd, but the way I work is unlike many other artists and it’s because of my keratoconus. It’s silly, but I don’t like to paint with my corrective lenses even though they help me see better. If I know I’m going to be painting, I make sure to take my lenses out beforehand. Also, most people who paint want to have natural light bursting through their windows. My studio gets indirect sunlight and has dimmers on the light bulbs. This also helps with the fact that I still deal with light sensitivity. I love getting lost in my painting, regardless of how my eyes feel. I can paint for hours and not realize until after I’m finished with my session how tired my eyes are and I know it’s time for me to rest and recharge.
When it comes to my paintings, they tend to have a dream-like quality and fuzziness to them. They don’t have crisp lines or edges. My paintings are more abstract. Now, I’m not sure if that is just my style in general, but it’s not hard to see some similarities to how I am seeing the world without my scleral lenses. To me, all of these details give my art a beautiful, more personal quality to it. I often wonder if the way I see the world impacts the way visual art comes to me. Since I’m most comfortable in a darker setting, I’ve found that I also tend to use a darker palette in my work. I am even working on a series this year focusing on nature and how things appear in the dark. This truly shows how my keratoconus has impacted my color palette and the beauty that I find in the darkness.
A Potentially Genetic Condition
I have two children — a 15-year-old daughter and an 11-year-old son — and I am their biggest advocate, especially when it comes to eye health and receiving their annual eye exams. I know keratoconus can be genetic, so naturally, I am concerned for their eye health. So far, their eyesight has been fine, and they haven’t needed glasses or corrective lenses. Knowing the symptoms of the condition, as I have been through most of them, I am looking for related issues such as eye rubbing that might indicate early stages of the progressive condition.
Now, with the availability of the FDA-approved epi-off cross-linking procedure, I know the treatment path I would want my children to go down should they be diagnosed with progressive keratoconus. Although my corneal transplants have been successful, I am thrilled there is a better, less invasive option available to treat progressive keratoconus.