“Where will you put me when I go blind?” my mother asks me quietly. She asks me this question in various forms several times during my visit with her this late spring afternoon.
“Right here, Mom, I hope to keep you living here for as long as you can handle it,” I respond again. Patiently as I can is important. After answering that same question many, many times a day my patience is worn thin with her. It’s usually in response to her fear and anxiety of lessening independence, the negative effects of aging, and her declining ability to see.
Macular degeneration progressing over the last eight years has robbed her of eyesight to see many details of life. Her visual field consists only of the peripheral, catching glimpses of the sky, overhead traffic signals, and movements around her. She can see to walk by watching the ground below and where her feet are landing. To see the face of her family again or pick out the hidden words from word search puzzles are her only wishes now.
Her frail body moves quickly as she fidgets in her chair, reaching for a cigarette. A tall glass of wine and her ciggies late afternoons are the staples of her life. A head of blond hair, streaked with black and gray, holds the natural curl of her youth. She still does her own haircuts with scissors, no need for a mirror, just by feel and with a sense of evenness developed over the years.
“I know it’s age,” she says sadly. “My eyes just wore out.” Proudly she remarks, “Look at me, I’m almost eighty.” A smile comes broadly across her face with this statement. A statement from a woman who kept her age a secret most of her life and now tells anyone who will listen how old she really is. Some days it’s almost eighty, other days only seventy-two.
“I know, Mom, I wish I could help you in some way,” I reply with sincerity, reluctant to the fact there is nothing else I can do.
I would help her in any way possible to regain some eyesight. She told me several years earlier that she had to stand in the street to see the bus coming. That was my first inkling of her eyes going bad. After many difficult eye exams and a final determination of macular degeneration, I enrolled her in a clinical study that would supply her with medicine to possibility reverse or stop the progression. The study was for the genetic determinants of macular degeneration, so that she received the medicine shots in the eyeball for participating was a bonus. To watch the long needle be inserted into the whites of her eyeballs was more than I could handle. She never flinched. Ready for her cigarette and coffee as soon as the appointment was over.
“My eyes, my eyes,” she says. “I wish I could see more. Everything in front of me is a blur. I can’t even see your face anymore.”
Without the sense of sight intact, blurred vision takes away the ability see facial expressions, make eye contact with others, and get those subtle social cues of being human. My mom’s vision changes are robbing her of so much contact with others. A lifetime spent looking to be noticed through her eccentric behaviors, wild dress, and excitable personality is now dampened and constrained.
“I know, Mom, it’s got to be so hard for you,” I reply with sadness.
Her clouded blue eyes continue to search and catch anything at the edges of her sight.
“Look at that sky, Blessed Mother Blue Sky is so beautiful today. The clouds just moved out and now look at it, so blue and beautiful!” she exclaims excitedly.
Not even close to a religious person in her adulthood, my mom was raised by strict Catholic parents, attended parochial school through high school, divorced twice, then left her rural Long Island roots to live and work in the casinos of Reno, Nevada. Not much religion there amongst the gamblers, drinkers, and other behaviors scorned by religious types. But somehow she kept her connection to the divine through frequent prayers of “Jesus, Mary and Joseph,” “Jesus Christ,” and her mainstay of support, “Blessed Mother,” usually exclaimed in heats of anger or surprise.
“I don’t know how you see the sky, Mom. You are right, it is beautiful today.” I confirm for her what she does see. I want to make sure she is truly seeing what she sees, not some made up version of what it might look like with full vision intact.
“The birds at the feeder too, I see them pecking away at the bottom of the feeder. There’s that big fat one again. Dear God, how do they eat so much?” For a woman who didn’t spend time outdoors for all her jobs in casinos and restaurants, her attention to wildlife is stunning. “Good question,” I say back, thinking about her weight, at barely ninety pounds with only one full meal a day and a chocolate protein drink mid-afternoon.
“Yes, Mom,” I assure her again, “the feeder is so busy with those birds and good thing there is lots of food for them.”
“Dear God, I can hardly see anything anymore,” she laments with a tone of despair and longing.
Again, assuring her, with kindness and my own despair, I respond, “Yes, Mom, you see what’s most important to you now. Blessed Mother Blue Skies and birds at the feeder.”