Loss of Connection: The Unexpected Cost of Vision Loss

I was diagnosed with early stage dry age-related macular degeneration (AMD) at age 65. During the first 4 to 5 years, I could totally forget about having a progressive eye disease. Once a year I dutifully traveled 2 hours to have my retina specialist check my eyes. It was a minor inconvenience that had little impact on my life.

Traveling to injection appointments

By the fifth year following my diagnosis, I was diagnosed with intermediate stage AMD. I learned all about the cost of having AMD. Thankfully, Medicare covers my treatment costs.

Traveling 2 hours each way to appointments is expensive. There is no public transportation in my rural setting, so I have the inconvenience of finding someone to drive me. I feel obligated to provide a meal for my driver.

Adapting my home to low vision

In the summer of 2023, I was diagnosed with geographic atrophy (GA). I now need various aids to manage day to day life. Good magnifiers are expensive and just 1 will not suffice. I keep a magnifier in the office at all times; I also keep 1 in the living area, 1 in my bathroom, and 1 for my purse for eating out or grocery shopping. I am slowly replacing appliances with Alexa-assisted voice commands.

The social isolation of vision loss

Nothing prepared me for the social isolation associated with vision loss.

Attending church is my most important social activity. Unable to drive at night, I stopped attending evening services. During the holidays, my church has several special events. Unfortunately, most are at night to accommodate those who work.

The pain of missing out on Christmas pageants, Valentine dinners, & Bible studies hit me hard.

Impacts on my church and family life

The church we have attended for 10 years is a 30-minute drive away. Reluctantly, we made the decision to attend church closer to home earlier this year. I am finding it challenging to get to know people in our new church. I miss out on all the evening services. Recently, I joined a Bible study held at 5 o'clock in the evening. With the time change in November, I will now be unable to attend.

I am especially close to my family. Now that I have 3 great-grandchildren, I would love to see them often. Prior to my vision loss, I could easily drive 2 to 3 hours to visit family living in the city. City driving is out of the question now, and I am limited to 1 or 2 visits each year. I am sad that my great-grandchildren will grow up without me having the opportunity to get to know them.

Finding connection and community

I recently volunteered for a special event our church provided for the community. We offered eye exams and glasses at no cost to participants, as well as free haircuts, clothing, health screenings, and food. I was certainly outside my comfort zone volunteering. Ironically, I was asked to help with the eye exams and fitting people with glasses.

I am exploring the idea of holding Bible studies online using Zoom. It will require learning new technologies made more difficult with vision loss.

I would love to hear about ways you have found to stay connected to your community. Please consider sharing in the comments below.