My mother had age-related macular degeneration.
It is likely she was in her early 70s when it was first diagnosed. Yet when she came to live with us for 11 years, she never once mentioned her deteriorating vision. The life-changing medications of today did not exist back then, and so it definitely was easy for me to ignore her lurking AMD.
I never thought much about how it might someday impact my life as well.
I much preferred to relate to all the positives I inherited from my mom, and there were many. Yes, I would hypothesize; one negative we shared was osteoarthritis. And sure, there was all that dizziness and vertigo stuff. But AMD and I were not related.
When my mother was about 94 years old and living in a nursing home, I noticed that she always had to sit under a bright light to bentch (recite the Grace after Meals) after eating in the communal dining room. Still, I continued to be totally in the dark (forgive the pun) about her vision. All I could see was her devotion to bentching.
My mother was a religious woman whose love of her Creator was reflected in observing mitzvot; acknowledging God’s kindnesses after eating was a given. Perhaps she agreed with Rabbi Lord Jonathan Sacks z”l, who wrote: “The world we build tomorrow is born in the prayers we say today.”
I hated watching my mom struggle, and I thought the problem could be solved easily. I called JBI International (previously called Jewish Braille Institute) and ordered a large print bentcher.
Imagine my surprise – and I admit some annoyance – when my mother informed me that the large print did not help. She could not read the words. And so the bentcher sat in the drawer unused. And there I was, still in the dark.
As the years passed, unfortunately, even the bright light could not help mom’s vision. My mother could no longer read.
Even then, I never connected myself to my mother’s struggles. Yes, I was methodical about scheduling my once-a-year eye exam and always reminded the doctor that my mother had age-related macular degeneration. But I foolishly never imagined that my time would most likely come as well. Age-related? Exactly what age are we talking about here? I had, thank God, successfully avoided other adjective-defined illnesses, like early-onset dementia, so why not bypass another illness often associated with age?
I recently read an article estimating that approximately 11 million people in the United States suffer from age-related macular degeneration. In case you are wondering, it is caused by deterioration of a small area in the center of the retina called the macula. There are two major types of macular degeneration: dry and wet. As of today, there is no way to reverse the damage from dry AMD (which often turns into wet).
If it is diagnosed early, AMD’s progression can be slowed by taking vitamin supplements, eating healthily, and not smoking.
Wet AMD is a whole other story.
Aging causes damage to the macula, which is the part of the eye that controls sharp, straight-ahead vision. (A 30-year-old person will not have AMD, hence the age-related adjective.) Simply explained, abnormal blood vessels grow underneath the macula. If the vessel leaks blood, fluid, or lipid that does not reabsorb or leads to scar formation, then complete loss of central vision can occur.
And here, finally, is my quite belated aha moment of understanding why the large print did not help my mother. Her vision wasn’t unclear. It was totally blocked.
In 2014, when I was 67 years old, my usual yearly eye exam turned unusual. Looking carefully at one of the eye tests, my eye doctor walked across the hall and brought in the macula specialist. My heart began to beat faster, and I started to sweat. All it took was about five seconds for him to look at the test, turn to me, and advise me to call his office in the morning and schedule a fluorescein angiogram and an optical coherence tomography of my eyes for the following week.
Who wouldn’t sweat?
It was a very long week.
The angiogram confirmed his suspicions: although I had never had a bleed, I did have AMD in my left eye. “So what do we do?” I asked innocently. “It cannot be cured, but it can be managed,” was the matter-of-fact response. “How?” was my obvious next question. “With an injection into the eye,” responded the eye doctor. “Once?” I asked quietly. “No,” he responded simply and then added, “For the rest of your life.” At which point I burst into tears. Big, heaving, sloppy tears. And the arthritic condition I shared with my mother suddenly seemed minor compared to this latest genetic component.
Through the tears, I continued to ask more questions. Would it also develop in my right eye? How often would I need the injection? Did it hurt? Could I drive afterwards? And when should we begin? All the questions were answered patiently and somewhat matter-of-factly.
The first injection was scheduled for the following week.
It was another very long week.
My appointment was set for 4 p.m. The first thing the doctor did when I sat down in the chair was mark a small X over my left eye.
Suddenly I had a flashback to the day my youngest daughter was being prepped for surgery on her left leg. They also marked an X on her leg. As they wheeled her away to the operating room, my brain was playing out the following thought: When they have my daughter on the operating table, will that X tell them that was the leg that was having the surgery, or will they see the X as a STOP sign that says, “Do not touch this leg; work on the other leg?
I forced myself to let go of imagining such a terrible mistake, and then breathed a sigh of relief when I returned from my reverie to the present and heard, “So we are doing the injection in your left eye.”
Permit me to describe the process briefly. And I do so for one important reason. Every time someone asks me about the injections and I begin my description, grown men and women often become childlike. They turn delicate and queasy; they throw up their arms or cover their eyes and recoil from any explanation.
But here’s the thing: they are losing out on hearing about the most amazing, remarkable procedure! So here you go!
The seat is tilted back (slowly, to avoid those stressful vertigo possibilities!). With a sterile cotton tip applicator, the area is numbed, then disinfected with diluted betadine. A metal device called the ophthalmic speculum is then used to hold the eye open. As the doctor stands to my left, he asks that I keep my eyes on the red dot on the ceiling to my right. Focused on that red dot, I do not see the doctor on my left. I do not see anything he is doing.
He then marks where the needle will go on the eyeball.
Now I actually wondered that first time if he was using a kind of magic marker for eyeballs to make that mark. Only recently did I ask him how he marks the spot and was surprised to learn he does so not with a magic marker for eyes (an imaginative thought), but rather with a tool called a marking caliper, which makes a slight indentation at the appropriate spot.
Once that is done, all conversation ceases. He puts on large magnifying glasses with the brightest, harshest light you can imagine. He prepares the injection and informs me that I will feel a little stick. I simply feel the pressure of the needle being inserted, and voila, the deed is done.
A small bubble appears to be floating in front of that eye.It disappears in about 45 seconds, but I have grown to love that bubble over the last nine years. I actually wait for its appearance. It is my assurance that the medication has reached its destination and my vision, unlike my mother’s, is safe.
Then the speculum is removed, the eye area is cleaned, a bit of alcohol on a gauze pad is used to remove the X over my left eye, the chair is put upright (slowly, of course), I schedule my next appointment, and I am sent on my way. It is without doubt an amazing process.
After my first injection, I stepped outside as dusk began to fill a vibrant blue sky. There was no remorse or sadness or anger that this injection was now a part of my life. I was simply overwhelmed with gratitude. As I slowly walked toward the bus terminal, I looked up to the heavens and quietly said, “Thank you, Hashem, for allowing me to live in a time when that is all it will take for my vision not to end up like my mother’s vision!”
And that is what I think every single time I receive that blessed injection.
When I first was given the diagnosis, the age-related piece kept playing around in my head, so when I came home that evening, I called both of my brothers, who are nine and 14 years older than I am. I was the kid sister sharing my news, but I also wanted to warn them of the possibility of this shared genetic problem. My oldest brother had not been to an eye doctor in years and was still using reading glasses from Walgreens.
And yes, you guessed it. One brother has dry AMD, while the Walgreen’s brother now receives injections as well.
My doctor’s medication of choice for this condition is Eylea, developed by Regeneron Pharmaceuticals. The schedule proceeded as follows: one shot each month for three months. All went well, so we jumped to one shot every other month for six months. And finally, I moved to one injection every three months. And there is always a check-up of both eyes in the middle of each cycle. One injection four times a year. Definitely worth it.
My doctor tells me that some people reach a point when they reject the process and are willing to take their chances that all will remain status quo. “Not me,” I’ve told him often. “I will never take that chance and stop.”
I often think about how much my mother would have jumped at the opportunity — even one that required a shot in the eye – to maintain her ability to read. I think about how diminished her life became once books and magazines and newspapers and prayer books were no longer a part of it. She would never want that for me.
My AMD was genetically passed on to me from my mother, but so was the wisdom to do what needs to be done. Perhaps that is why she was so determined to find the bright light to help her pray. She was praying for my future, a future in which my bright light is always shining quite naturally and clearly everywhere.
Postscript: Sincerest thanks to Dr. Michael Weiss, , my ophthalmologist, who manages the health of my eyes with wisdom and care, and who kindly edited the technical terms in this piece for correctness and clarity.
Tzivia Bieler and her late husband, Bruno, moved to Teaneck in January 1974. She retired as the executive office director of the American Jewish Joint Distribution Committee a few years ago. Retirement brings her pleasure, and more time to spend with children and grandchildren in United States and Israel.