When the phone rang in the mid-1990s, I didn’t realize it was the start of a chapter that would redefine my life’s work. My mother, Jane Henkler, was on the other end, telling me she had been diagnosed with macular degeneration. At the time, I had no idea what that meant. I just knew that “degeneration” sounded like a word that stole things away.
Coping and Thriving After Vision Loss
What followed was the vision loss journey—a path that is rarely straight, often frightening, and deeply personal. It is a journey I have chronicled in my eBook, “Blindness: Coping with (and thriving after) vision loss”. It serves as the heartbeat of everything we do here at The Blind Guide.
Today, I want to walk you through that journey, using my mother’s transition with AMD as a roadmap, to show you that while vision loss changes how you see the world, it doesn’t have to change your ability to live in it.
My Mother and AMD: The Initial Shock
For my mother, the transition began slowly, then happened all at once. Macular degeneration initially claimed the central vision in one eye. She was widowed and living independently in Florida, and for five years, she managed. But when the second eye was affected, the world she knew suddenly felt inaccessible.
When she arrived at our home in Pennsylvania, she was frightened. Her world had shrunk to the boundaries of what she could touch. This is a common starting point on the vision loss journey. Whether the loss is sudden—like the story of Lonnie Bedwell, adventurer and mountain climber-or gradual, the emotional toll is the same. There is a period of mourning for the life you thought you would have.
As a caregiver, I was in “caretaker” mode. I wanted to do everything for her to keep her safe. But there is a vital difference between a caretaker and a caregiver. A caretaker protects; a caregiver empowers.
Turning Point: Finding the Right Map
We eventually found out about the Montgomery County Association for the Blind. It was a revelation. For the first time, we weren’t just guessing. We were working with professionals who understood that independence is a skill that can be relearned.
They taught her Orientation and Mobility (O&M). They showed her how to use a white cane to navigate curbs and surface changes. They helped us modify her apartment—using tactile markers on the stove and microwave so she could cook her own meals. This is the “Level I” stage of what I call the Six Levels of Thriving.
Six Levels of Thriving with Vision Loss
Below, I propose a framework to help individuals and caregivers understand where they are and where they can go. The vision loss journey isn’t just about getting by; it’s about moving through these stages:
1. Basic Tasks & Travel
This is the foundation. It’s the moment you realize you can still make a cup of coffee safely or walk to the end of the driveway. It’s about restoring the basic activities of daily living (ADLs).
2. New Destinations and Discretionary Activities
You start to venture out. You might take public transportation to a new part of town or join a social group. My mother reached this level when she began attending meetings and events at the association, realizing she wasn’t alone.
3. Doing What You Did Before
This is a major milestone. It’s the restoration of your previous quality of life. If you loved gardening, you’re back in the soil. If you loved to cook, you’re hosting Sunday dinner again. My mother reached this point when she regained the confidence to live in her own apartment near us.
4. Meaningful Employment or Volunteering
For those of working age, this is about tackling the high unemployment rate that plagues our community. For retirees like my mom, it’s about finding purpose through volunteering or mentoring others who are just starting their journey.
5. Doing More Than Before
This is where the journey gets exciting. It’s about overcoming previous fears. My mother had never traveled outside the United States while she was sighted. After losing her vision, she joined a tour group and traveled to Germany. She did more without sight than she had ever done with it.
6. No Barriers and Adventuring
This is the “extreme” level, occupied by people like Erik Weihenmayer, who climbed Mount Everest. But for my mom, her “Level VI” moment happened in the sky.
Jane’s Mount Everest
One of the most impactful stories I like to share is my mother’s first glider flight. Here was a woman who was once afraid to walk across a room, now strapped into a cockpit, soaring thousands of feet above the earth. She couldn’t see the horizon, but she could feel the lift of the thermals and the rush of the wind.
She wasn’t just surviving with AMD; she was thriving. She had moved from a place of fear to a place of absolute freedom. That is the ultimate goal of the vision loss journey.
Role of Enabling Technology
We live in a golden age of assistive technology. Tools like screen readers, smart canes, and AI-powered apps (like InnoSearch AI) act as the “eyes” for the digital world.
However, technology is only as good as the training behind it. My mother wasn’t a “techie,” but she learned to use the tools that mattered to her. Whether it’s a high-tech wearable or a simple 5-button tape recorder, the right tool at the right time can shave years off the adjustment period.
My Message to Caregivers
If you are supporting someone on this path, remember that your journey is parallel to theirs. You must take care of your own mental health to be an effective partner. You are the navigator, but they are still the captain of their ship. Encourage them to take risks. As I always told people who asked if I worried about my mom’s AMD and being out alone: I’d rather she lived the life she wanted, even with a little risk, than stay “safe” and unfulfilled at home.
Your Vision Loss Journey Starts with a Single Step
The vision loss journey is not for the faint of heart, but it is a journey that leads to incredible places. It led my mother to Germany and into the clouds. It led me to start The Blind Guide to help others find their passion.
If you or a loved one are facing a new vision loss diagnosis, don’t look at the whole mountain at once. Just look at the next level.
If you are ready to move from surviving to thriving check out these useful resources :
Find resources at the Prevent Blindness Living Well with Low Vision Directory of local services.