Learning to See Differently
Ten years ago, at a routine eye doctor appointment, I received a diagnosis that knocked my socks off and changed my view of the world…quite literally, pun intended.
The doctor, who was newer to the practice I’d been going to for nearly thirty years, was going through the normal exam routine. After all the various tests on the big machines, she was checking my vision in the dark room with the pivoting discs used to dial in one’s prescription.
I expected the usual: a slight change in my eyeglasses prescription, definitely a new sample pack of contacts to try for a week before ordering a six-month supply. What I got instead came as a huge shock and, over time, became a real wake-up call.
First came the news that my near vision had deteriorated enough that I now needed something called “multi-focal contact lenses.” The multi-focal lenses corrected both near and distance vision, and would turn out to be life-changing. All pretty normal stuff for my age-group so far.
Then came the kicker. The doc told me I had mild macular degeneration.
My heart instantly started racing…you know that feeling where your ears get hot and your heart feels like it’s pounding somewhere up in your throat?
She explained that I had Dry Age-Related Macular Degeneration, or Dry AMD. My head was spinning as I tried to absorb every word. I knew very little about the disease except that older people got it, and that it could eventually lead to blindness. I was fifty-five years old.
The doctor explained that Dry AMD happens to some people, usually a good bit older than me. Experts don’t fully understand why. There was no cure, no reversal. I could try to slow progression with a supplement called PreserVision AREDS 2, exercise, and a healthy diet, preferably Mediterranean-style. Dry AMD can progress to more severe stages and, in some cases, to Wet AMD, which is far more serious.
Despite the difficult news, I liked her immediately. Calm. Direct. No nonsense. I was grateful for her honesty, and trusted her for figuring this out. I had so many questions, but appointments are short, and there are always more patients waiting. She was calm, kind, slightly apologetic. The doc said we’d monitor it annually.
My burning question: How is there no treatment? How can modern medicine have so little to offer for a disease that could eventually take a person's vision?
I walked through the checkout process in a haze and sat in my car for a long time trying to process what I’d just learned. All I could think was: Why did this happen, what did I do to bring it on? I was fit. I ate quite healthy. I was active. I didn’t smoke. As humans do, I immediately started searching for a reason. Stress? Genetics? Falling asleep in my contacts one too many times? I did some googling. Like so many diagnoses, there was no neat explanation. Just uncertainty.
My first call was to my mom. She told me she’d been diagnosed with Dry AMD too. She couldn’t remember when exactly, but not too long ago. I somehow didn’t remember that conversation. She was into her eighties at the time. I also remembered one of my best friend’s dads had macular degeneration. He was in his late eighties and hadn’t driven in many years because he was considered legally blind. But at fifty-five? This news felt terrifying.
I drove straight to CVS to buy my first bottle of AREDS 2 vitamins. Then, as I tend to do, I immediately poured myself into research, signed up for newsletters, and tried to learn everything I could related to AMD. I was determined to do everything in my power to slow progression.
For years, the disease held steady, and I settled into a rhythm of annual appointments and cautious optimism. Maybe, I thought, if I did all the right things, I could keep it at the mild stage indefinitely.
Until I couldn’t.
Five years later, the same doctor, who I of course followed for her new practice, told me the disease had progressed from mild to moderate. Again, I was stunned. By then we were living in Covid times, and my brain immediately started playing detective again. Had Covid accelerated it? Had stress? Had I done something wrong?
Eventually I realized the guessing game was futile. So far, the disease wasn’t significantly affecting my vision. Most of my day-to-day changes still seemed fairly normal for aging. My girlfriends and I, now all sixty-plussers, joked about pulling out our cheaters to read menus in dimly lit restaurants. It felt like one of those inevitable rites of passage. Still, hearing the word “moderate Dry AMD” at sixty felt very different than hearing “mild” at fifty-five. This was moving faster than I’d hoped.
By then, I’d also read plenty about Wet AMD, the more severe form of the disease. Ironically, it’s the only version that currently has meaningful treatment, often involving regular injections directly into the eyeball. Not exactly comforting. At first, the idea sounded horrifying. Then I thought, well, if that’s what it takes to preserve my vision someday, then sign me up.
But somewhere along the way, something else happened. This diagnosis changed my view of the world.
I realized there might not always be more time. Who knew when the other shoe would drop. I felt an urgency. To travel. To see mountains and oceans, cities and sunsets, while I still could. I wanted to soak in all the beauty this world has to offer, with gusto and fervor, while my eyes still allowed me to fully experience it. I began thinking differently about time, aging, and opportunity.
By then, my husband Tom, ten years older than me, had begun experiencing hearing loss. Like AMD, there’s no cure or reversal. At least hearing aids exist, imperfect as they may be. I’d sometimes play a strange mental game with myself: Which would I rather lose, my hearing or my sight?
There is no good answer.
I couldn’t imagine either. Losing my beloved music, the sound of wind chimes, or my children’s voices.
Like so many illnesses, none of us gets to choose. This sounds dramatic, I know. This is not a terminal diagnosis after all. But losing the ability to see well, or at all, carries a unique fear and worry. Loss of independence, driving, even simple navigation through your own home.
I’ve tended to live life pretty intensely at times. Just ask my family. I was forever saying to Tom, “We need to take the trip. The kids won’t be under our roof forever.” Thankfully, he was game, and we’ve been incredibly fortunate to travel and experience so much beauty together as a family. Even now that our kids are grown, they still like hanging out with us. I am so thankful for that.
Quite literally, I’m only now rolling into the age of Medicare, and I’ve already been living with this diagnosis for ten years. So far, AMD has not affected my vision, that I’m aware of. What it has given me is heightened appreciation and an overwhelming sense that I need to “get while the gettin’s good.” To travel. To learn new things. To experience as much as I can while I can.
Someday, this disease may significantly affect my vision. I’m not sitting around waiting for that to happen.
Instead, I’m trying to live with greater appreciation, for all the beautiful things I’ve already been lucky enough to see, and for all the beauty still to come.
It’s not my usual style to give advice in Life380º. I prefer to simply share lived experiences and let readers take what they will. But reflecting on this experience, offering advice feels unavoidable.
Do the thing. Learn the skill. Take the trip. Check the place off the bucket list. Today, tomorrow, next month, as soon as you reasonably can.
Cliché, I know, but none of us are promised tomorrow.
Live life fully, in the moment.
Today.
And every chance you get after that.
