Stage 1: Denial

“Dad, did you set your alarm and forget to turn it back?
Your clock is 6 hours ahead.”

“Oh? That thing’s broken. Some numbers don’t show up anymore.”

I adjusted his digital alarm clock back to the current time.
It was working fine.

After hearing several of dad’s vision complaints such as this, as well others like “ "I see things backwards sometimes,” and a few mistaken turns from the highway to off-ramps marked WRONG WAY, we decided it was time to fix the problem. He was 69 then and had been wearing glasses since I could remember. It seemed logical he was due for a check up and possibly a stronger lens prescription.

Later at Lens Crafters, my sisters and I playfully slipped endless varieties of hip, new frames across my father’s grimacing face--Laughing at the ridiculousness of Gucci Couture paired with his unassuming London Fog, plaid shirt and brown cords. After about the twentieth pair he'd had it,“Parties over,” he announced, laughing. “I’ll take the no-names.” They were the cheapest pair and appeared almost identical to the glasses he’d worn for the past 15 years. My sisters and I made fun of him for being a walking time capsule from 1984 and he cracked up. We laughed a lot the day.

“They must have missed something the first time,” was Dad’s response after I confronted him about the disappearing car episodes.

Shortly after his first exam, new no-name glasses in tow, dad reportedly couldn’t find his car in the supermarket parking lot. His friends, the recipients of his phone calls for help, grew increasingly concerned and covertly reached out to me to express their worry. As it turned out this was business as usual for dad. When I confronted him about the scenario he was surprised at me for being surprised. Later I came to find he was just going about his day as always--Half blind, but with a perfectly good pair of eyeglasses.

We decided to return to the Optometrist and get re-tested, explaining to him although some things were clearer, depth perception was still a problem and sometimes certain objects would just disappear… Like digital numbers on a clock, or a car in a crowded parking lot. The second exam concluded the same as the first: There was nothing wrong with dad’s eyes. His vision was deemed “normal,” despite random episodes relating to the opposite.

We requested a referral from his GP and made an appointment with an Ophthalmologist. Certainly a doctor with extensive medical training specializing in the eye would have the answer. We were hopeful her clinical experience would solve the mystery, but to no avail. Instead she concurred: "There's nothing wrong with your father's original prescription, but have you considered Cataract surgery?“

For years, doctors dismissed dad’s vision complaints as being “all in his mind.”
Over and over again the complexities of his disability were misunderstood, leaving the true cause of his impairment to slip under the radar. Our frustration was mounting but we refused to accept dad’s visual impairment as unsubstantiated by the eye “experts.” In the meantime, his girlfriend Lois was spearheading our quest for a more accurate diagnosis. She spent the most time with him and had developed a keener sense of his mysterious eye problems. It was Lois who mentioned, through her Internet research, that his symptoms sounded similar to a dementia-related malady. A problem that had less to do with his eyes but more to do with his brain. We didn’t like the sound of it, but the inconclusive results we’d encountered so far had been too erroneous to accept.

Our GP suggested we contact a specialist from the Mayo Clinic. We were told we should be thankful they could squeeze dad in as a new patient--in six months time. Graciously, we thanked the nurse for fitting us in to see Dr. Murman, the highly acclaimed Neurologist. At the same time I wondered to myself just what the hell dad’s vision problems had to do with Neurology.


48 hours before his appointment, dad’s eyesight issue quickly became more involved. The nurse called to remind us to prepare appropriately for the following: CAT, PET, EEG, LP and MRI. Later I found these acronyms were really tests they’d planned to perform on dad to isolate the problem. When asked what exactly these tests would be measuring, in English, the nurse responded with a series of brain-related phrases:

They would evaluate Spinal fluid to diagnose bleeding around the brain, inflammation of the brain, or possible increased pressure from the hydrocephalus, (A.K.A. swelling of the brain). His brainwaves would be measured and recorded to determine characteristics of consciousness, and also detect potential developing brain diseases. Another chemical would be injected and detectors would sense where the chemical collected. The image resulting would give us information on the presence of damaged brain cells.

A serious amount of braintalk was being thrown around. But what had not been explained was the correlation of dad’s vision problems to the brain proper. What were we delving into, exactly? My gut told me nothing good. Any test that required release forms be signed prior to administration was no simple matter. No matter was ever easy, I began to realize, if it related to the brain.

After receiving the test results Dr. Murman concurred yes, dad’s vision appeared to be fine traditional sense--there was indeed nothing wrong with his eyes. But instead, the problem lied in his ability to perceive what he saw. More specifically, the synapses or connections that linked the brain receptors to eye receptors were damaged. Plaques had built up around them, slowing down or in certain cases destroying the visual comprehension process. Due to an unknown cause at the time, the rear dermal portion of his brain, the part controlling visual perception, spacial relationships, and object recognition, was severely weakened. The formal diagnosis was Posterior Cortical Atrophy (PCA)--A rare degenerative brain disorder.

As if this weren’t bad enough, the Neurologist went on to further define my father’s affliction as a visual variant of Alzheimer’s Disease, and chances were high that within the next few years, preceding the inevitable memory loss, he would indeed go blind.