Author Archives: kbs

Stargardts is Ravaging My Retina

Posted June 1, 2024 by kbs

What does macular degeneration look like?

Show and tell with my ophthalmologist

In 1998, I was diagnosed with Stargardts Disease. Since then, as my vision degraded, I have been getting annual checkups. The first images of my retina were taken with a Nicon camera. (Do you remember film? So much has changed in 26 years.) Last week, with my phone, I took video of the appointment with my ophthalmologist. Above is an excerpt of the doctor explaining one set of electronic scan.*

For comparison, below are scans showing a healthy retina and mine in 1999 and 2021. The black areas are dead cells caused by the buildup of toxic byproducts.**

Comparing the 2021 scans to the scans in the video, there does not appear to be much difference. This was surprising to me. I feel my sight is much worse. Three weeks ago, I was at a park that I hadn’t visited since last spring. Looking out across the lake, I couldn’t make out what was on the other shore. Last year I could.

Knowing my annual eye appointment was near, I was determined to see the scans and compare them to earlier ones. The degeneration appears to be slow, but not in my comprehension of visual information. What will the next year bring?

**The buildup is caused by variants in the ABCA4 gene, which prevents the ABCA4 protein from removing these toxic byproducts. The ABCA4 protein is involved in transporting a retinal phospholipid compound that helps remove potentially toxic compounds from photoreceptor cells. –National Eye Institute

A link to my 2019 exam with my Columbia Presbyterian ophthalmologist in NYC .

Discovering The Vision & Arts Project Exhibit

Posted May 17, 2024 by kbs

An exhibit of artist with macular degeneration just happened to be on view when I returned to Gotham to visit friends and museums in April.

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In March, a university student contacted me for an interview. She was writing her thesis on artists with Stargardts disease and was looking for subjects to talk about their experience. In the course of our communications, she asked if, during my upcoming trip to NYC, I would be viewing the Vision and Arts Project exhibit What Was Once Familiar?

“Who?” I had never heard of the Vision and Arts Project.

She explained that The Vision & Art Project gives greater visibility to the overlooked influence of macular degeneration on historical and contemporary artists. Founded in 2013, VAP is an initiative of The American Macular Degeneration Foundation. This would be their tenth annual exhibit.

“What?! These are my people! And I have never heard of them!?” Amazing. The exhibit at the National Arts club in Gramercy Park was my first stop on my first day.

All the artists were of great interest to me, but I am going to focus on just two.

The Morning of September 11th, 2001 8:45 SM pre macular

Robert Birmelin‘s paintings were the first I encountered. The Morning of September 11th, 2001 8:45 AM pre-macular demonstrates Birmelin’s talent for photo realism that becomes haunting after reading the title. Painted in 2002, it is a powerful expression of time, place and mood. By employing photo realistic accuracy, he contrasts droll everyday routine with the impact of historical tragedy.

His complex post macular Two in One and The Red Room both 2020 are expressionistic images that also captures time, place and feeling with inventive distortion and color that becomes immersive as I unravel their compositions.

Both his pre and post macular paintings were very accomplished, but knowing that he had to adapt his technique due to the limits of his visual impairment deeply affected me. It is a reaction I might not understand if I was not also post macular.

A short video of some Robert Andrew Parker paintings pre and post macular degeneration.

The video shows some small landscapes but it was the monkeys the “spoke” to me. Having made some Flora with Simians in 2011 (see on page 2), I was intrigued by his subject matter. It appears that he resolved his impairment by working large.

I now know that the landscapes were post macular disease. Their size might be because they were done in situ. I will investigate further. See VAP page with video

Viewing the paintings was meaningful to me in a visceral way. Now, researching and writing about the artists has only deepened that experience. I highly recommend Alice Madttison’s insightful overview Freedom from Specificity, written for the exhibit catalog. It explores in greater depth what I have only touched on here. On view March 20 to April 22, 2024.

Pages: 1 2

Remembering Normal

Posted September 7, 2023 by kbs

U C me. I C U. Hmm. Sort of. Well, not really.

As my central vision has degenerated over the past six years, I have been adapting to accommodate my limitations. For example, watching television, shaving, reading email and clipping my fingernails. These all require workarounds.

When having a conversation at a normal distance, I don’t see the other persons face. There is just a gray blur above their neck. To see their facial features, I look to the right and down, just above their shoulder. That is my peripheral strong spot. Even though I don’t see their expression, by looking towards their face, I assume that they are unaware of my deception. For them, everything is “Normal.” This is just one technique I have developed to limit being “different”.

Or so I thought until last night when I had a conversation with my wife at the dinner table. She said she misses eye contact with me. I was stunned. It may not be as obvious to others, but with her, my work-around is a FAIL!

Merde! Social interaction and non-verbal communication by eye contact is becoming just a memory. More critically, it is essential to intimacy. I am being deprived but didn’t realize it because this has happened so gradually. Writing about it here, I realize how much I miss it. 👁️

EUREKA!

Posted August 14, 2023 by kbs

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Four paintings: **Epsilon, Beta, Mu, Nu**
11″ x 17″ mixed media on paper

Since I no longer have central vision accuracy, I need a new approach to making art. I began this series of paintings layering gesso, watercolor washes, oil stains, varnishes, markers, gauche and acrylics on top of printed graphics. This was done with the goal that the viewer would “read” the layering history and ‘feel’ the contrasting textures, as they explored the intuitive compositions. Though I infuse the work with my intent, each viewer brings their own interpretation.

BRAVO! They talked to me. Observed in situ, I was very satisfied with the results. That is until I photographed them for my book and website. Reduced to a flat image, their sensuousness was lost. This was a serious concern as print and screen are primary modes for exhibiting my efforts. This affects all future INSIGHTs. The Medium is the Message.

Then, about two months ago, I discovered a solution… of sorts. Instead of photographing the work with traditional balanced lighting, I found that using a stronger light on the right, cast shadows that emphasized the three dimensionality. EUREKA! I started adding shallow objects, wire, string, thread and, as Summer arrived, pieces of nature. This is an important improvement. Maybe only a slight one, but I am grateful. It seems Evolve and Adapt is a theme for my limitations.

Inspiration. Persistence. Expectations.

Posted August 12, 2023 by kbs

In the Preface of my next book HOPE, I explain how I arrived at that title. A companion to that could be INSPIRATION. I keep asking, “Why and how does Art provoke us? What is its purpose and value? What do artists expect?” (Don’t get me started on Managing Expectations.)

Today Mary invited me to go hear a guitar duo play at a club just off Lake Street. It was 10:30 AM on a Sunday and the two of us were the only audience. Were the musicians disappointed? I was surprised, but welcomed the intimacy. We sat next to the stage.

Both were mid-career, very talented and their music was magical. Their inspiration was contagious. Was playing their purpose and reward? They were in a groove. We applauded loudly and even chatted with them between sets. Did they continue playing to an empty room after we left?

On leaving, we walked to her car down an alley where we came upon a young artist finishing a large mural, ten feet by maybe 50 feet. I had a recurring reaction. Who was going to see his hard work in an alley, in this part of town? We talked to him. He said his was just one of some 25 murals that had been created this week as part of a Mural Festival. Jake was young, very talented, and committed. The mural was impressive. He seemed gratified. I congratulated him, got his name and am now following him on IG.

Those two encounters illustrate the questions I have about artistic expectations and commitment. A less ambiguous experience is hearing the 96 year old pianist Cornbread Harris.

Late Sunday afternoons, he plays an infectious New Orleans rhythm and blues at a Dive Bar on our former Skid Row. He gets a decent audience of maybe forty regulars. Note the number of musicians backing him (above). At 96, I don’t question why Cornbread plays. The other eight musicians must be playing for love. They pass the hat for contributions. There is no cover, no drink minimum but it is a magical experience for everybody. Creativity is an addiction.

If Freud Won’t, Kant Can.

Posted August 9, 2023 by kbs

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Why does visual Art provoke me? I am not alone. Today I received this text message from WTP. He was writing from his cabin that over looks Lower White Fish Lake. Foolish me, I thought he was there to fish.

“Is art, as Freud believed, a kind of socially acceptable wish fulfillment for a social infantile desires? A way of finding in imagination what we have lost in life? A sublimation of serial energy? A way of transmitting our hidden wishes or shameful secrets, our failures and losses and humiliations, into beautiful objects that win us wealth and admiration and all the serial fulfillment that we put off in order to do the work in the first place?”

I suspect that message was in response to my quote in a previous conversation.

“The role of art, for Immanuel Kant, is to embody the most important ethical ideas. Art is a natural extension of philosophy. Kant held that we need to have art continually before us, so as to benefit from vivid illustrations and memorable symbols of good behavior and thereby keep the perverse parts of ourselves in check. He wanted to understand how the better, more reasonable parts of our natures could be strengthened so as to reliably win out over our inbuilt weaknesses and selfishness. Art helps us to be good.”

Yes. “Art helps us to be Good.” That stuck with me. Art represents an Ideal. Going to the Met was always inspiring. Once, while wandering I was stopped by an 8th century BCE vase. An anonymous Assyrian artist had the sense of beauty and skill that demanded my attention. His talent had crafted it and, ten thousand years later, it gave me a sense of awe. (Yo, that is so awesome, dude.)

Thank you WTP. Now I am going to contemplate Freud …and my navel. (What the hell is ‘serial imagination’?)