vision loss

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.

Listen

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. 👁️

Mansplaining Modernism

Posted January 28, 2022 by kbs

Why? This post serves two purposes.:
1. as my central vision degenerates, I need to develop a least frustrating method for sharing my insights. Trust me, unless you are visually impaired, you are not interested in me explaining further*.
2. Recently I have had several lively conversations on Modernism and Postmodernism where the other party and I could not agree on the scope and meaning of those terms. I want to resolve that. Here goes.

Broadly, the Modern Era philosophically emerges in the late 18th century with the Enlightenment, urbanization and the Industrial Revolution.

It embodies an outlook that affirms Progress, that is, the power of humans to create, improve, and reshape the world with the aid of rational thought, scientific knowledge, and technology.

Optimistically, it promotes new outlooks and methods that will provide the means to overcome historical limitation and expand possibilities. .

This is reflected in the many manifestos written and distributed expressing modern political ideologies and cultural artistic movements. These epistal expressed a hopeful train of thought. Interestingly, these Truths are not dissimilar to the singular paths to salvation expressed in the religious orthodoxies most modernists dismissed as antique.

If Modernism is objective, theoretical and singular, Postmodernism is based on subjectivity., skeptically rejecting a universal worldview

PS That’s it. I’m ready. That’s enough to make my point in conversation before. pivoting to social and artistic “isms.”

*I am exhausted. This took me hours of research, composing and editing,.
Q. What did I learn? Did I make any progress with writing workflow.
A. Some. I am not discouraged.

With my visual limitations, I need text-to-speech for editing. After I compose a sentence, I highlight it and hit my keyboard shortcut to hear what I wrote, listening for errors. Zooming in 800% on my 32 inch monitor, I can make corrections. The result is short paragraphs, hopefully without distracting typos.

That was my method today.

UPDATE 10/17/22
I recently stumbled on two YouTube posts from the channel Then and Now:
Modernity: An Analysis > Excellent
What Makes us Postmodern? > Interesting
I was provoked. So many more strands to consider. I changed my Twitter profile to Unlicensed Artist, Unpublished Poet. Pseudo Sociologist. I’m ready.

My Big VIP Adventure

Posted June 5, 2021 by kbs

Listen (sticky post)

M ore than 20 years ago, I was diagnosed with late onset Stargardt Disease. It is a progressive form of macular degeneration where the build up of Vitamin A kills retina cells leading to central vision loss. I cannot read a menu or a book. By comparison my peripheral vision is absolutely amazing.

amsler grid - me — How I see the Amsler Grid

This blog is my journal of how I am adjusting as a VIP (visually impaired person). Adapting to Vision Loss is a bit like going through the stages of grief. Consequently, I have quietly experienced periods of denial, anger, bargaining, depression and acceptance. as well as sporadic moments of profound philosophical insights into , cribbage, shoveling snow and the human comedy.

A timeline of that path would include: Eight years ago I stopped playing basketball. Six years ago I stopped driving Five years ago ended my commercial graphic design business as my skillsets slowed,. Two years ago I stopped reading print, transitioning to software that converts text-to-speech. Last year, thanks to ZOOM, I hired an assistant to screen share and aid me with intricate computer tasks. Technology Rocks. I ❤️ Voice Over.

As an artist, the impact has been disturbing. but I am determined to not let that defeat me. I am resolved to persist and record this journey. –KBS June 5, 2021