Living With Geographic Atrophy: Fear, Hope, and Moving Forward

I’ve always been a fairly well-organized person, and that’s the way I cope with most things in life. A few years ago, I even wrote an article for MacularDegeneration.net called "Don’t Agonize, Organize," because that approach helps me manage uncertainty and worry.

Now that I’ve developed geographic atrophy (GA), I’ve spent time looking back on how I’ve felt over the years. Since I was first diagnosed with macular degeneration about 13 years ago, I’ve experienced many emotions along the way. Reflecting on that journey has made me think about how those emotions have shifted over time, from diagnosis to now living with GA.

As my vision deteriorated, my worry grew

Before being diagnosed with GA, there was definitely a sense of denial. I kept telling myself, "I won’t get to the GA stage," even though my mother eventually became legally blind from GA. Knowing something may happen one day is very different from being told it is now your reality.

As my vision began to deteriorate and blank spots appeared, that worry started to grow.

From denial to "Let's get organized!"

At the same time, there was confusion, because some doctors said I didn’t have GA, while another specialist said I did have spots of GA.

That uncertainty led me back into denial, convincing myself that "spots" were not the same as full-blown GA, and that it wasn’t something I really needed to fully accept yet. Denial can bring a little bit of false comfort for a while, but it doesn’t fit in with my overall philosophy of "Let's get organized!"

My mother is my greatest inspiration

Underneath all of this, though, there was fear. I had already seen firsthand the challenges my mother faced when she lost her vision, and I understood what that could mean for independence, daily life, and confidence. The thought of losing the ability to drive, to read easily or to be independent was frightening.

At the same time, my mother has always been my greatest source of inspiration. She never complained or asked, "Why me?" She remained positive and managed life with strength and grace. Even after losing her home in a fire, and later facing a flood in the rebuilt house, she simply kept going without bitterness (and without most of her clothes and possessions from 80 years!). Her resilience has stayed with me throughout my own journey and reminds me that attitude can make a huge difference.

New GA treatments give me hope

As more blank spots now appear in my vision, there is now some encouragement because of the new GA treatments such as Syfovre and Izervay. For the first time, there are treatments that may help slow progression. Years ago there was nothing available. These treatments and other current research give me real hope.

I am now very close to needing these injections. This brings up concern and uncertainty in trying to decide which treatment would be best for me, and whether the potential benefits outweigh the possible side effects. It’s not an easy decision.

We are not facing these fears alone

For the moment, I’m trying to muster the enthusiasm and energy to do the things I want to do while I still have reasonable vision and while I can still drive. Some days that feels easier than others, but I’m trying to focus on what I can still enjoy and achieve right now, rather than what may come later.

Sharing these emotions feels important because many people here understand the mix of denial, fear, confusion, hope, and determination that comes with this diagnosis. It helps to know we are not facing this alone.