2010/2011 (age 58)
Onset of my preAMD symptoms presented an extreme inability to focus at work and to do tasks that were previously completed numerous times before. Updating a powerpoint template that was created, used and modified for years became impossible. Looking at screens was uncomfortable and became nearly impossible to read.
I had several appointments with an ophthalmologist recommended by my optometrist. I was assured each time that I was too young to have AMD and my situation was likely caused by stress.
2011
Still without an AMD diagnosis as the cause, my only option at the time was to retire from work. I felt I could no longer be effective.
2012
The first big symptom escalation occurred while driving. Suddenly vision became distorted. All straight lines became wavy. There were odd shadows and still objects that seemed to move in and out of my line of vision. All of this during a two hour drive home.
I returned to my ophthalmologist and was immediately sent to a retinologist. AMD was confirmed, wet in the right eye and dry in the left. Avastin injections began immediately in the right eye, but the fluid buildup was relentless requiring monthly injections going forward.
2014
Medication was changed to Eylea hoping for improved outcomes. Injection cycle estimates for most people on Eyela was projected to be about 10 weeks. While more effective in addressing the fluid buildup, monthly injections were still necessary.
2015
Double vision became a problem. To some extent this was addressed with prisms incorporated into the lens of my glasses. I also heard about visual therapy for people who had strokes and other brain injuries. I signed up for two sessions per week.
During the sessions I learned new exercises and was given a bag of the exercise tools to use at home. All the therapy helped and my double vision disappeared.
Optimistically, I applied for and obtained a 20 hours-per-week position on a start-up research project. The tasks of my half-time position were quite familiar but they began to take me more than 40 hours per week to complete. Although my double vision had vanished, the rest of the AMD symptoms had not. The job became unsustainable and short lived.
2016-2020
Time dedicated to reading books, painting and other hobbies fractured. I found I could do an activity for fifteen or twenty minutes before having to rest my eyes for thirty minutes or more before trying to continue. This fractured pattern created additional challenges when coping with fiscal and other routine life management duties. This remains the case today.
My left eye which had been initially diagnosed with dry AMD transitioned to wet. Both eyes then required Eylea injections.
During this period I finished the first of the paintings contained in this series - specifically the well worn old shoes.
2021-2023
During this time it was suggested that I consider surgery on my eyelids and brow to improve my visual field. I took the suggestion. Also, a new medication, Vabysmo, became available with positive clinical results. I agreed to try this option on my left eye while continuing Eylea on the right.
The retina in my left eye subsequently ruptured in a big way. So did my world. The visual distortion, blurry spots, hallucinations, and kaleidoscopic light patterns increased. Losses within the self-sufficiency area also increased. Most disruptive was inability to cope with all the visual changes while driving. I haven’t driven since.
I contacted the various local organizations serving the blind. I took mobility training, tried support group opportunities, and developed an attitude against adaptive equipment.
Despite this major change, I tried to paint again. This time specifically to show how the maple leaf photo looked to me.
Present (74 yrs old)
Within the last three years I completed the other paintings contained in this series. It was during my painting of the shadows on our patio that I began feeling as though I was discovering the “something missing” from my AMD treatment plan for the last ten years.
It no longer seemed that my progressive visual losses were only to be understood through the physiological scans and visual acuity measures and addressed only the magnificent educational and adaptive equipment advances created for the blind. I was now learning how to investigate a different level of perception.
I have begun imagining how individuals with AMD might use their unique visual chaos to stimulate the memories they have acquired pursuing their professional expertise or personal interest challenges of the past or ahead.
I can’t help but speculate how those uniquely acquired outcomes could potentially help guide the AI questions of tomorrow.