“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content” –Helen Keller

My brothers have been taking Dad out for breakfast a few times a year for the last 5-10 years. Recently my sisters and I noted a longing to also connect with Dad in a meaningful, intentional way.

So we began to meet through group conference calls. We each came with questions for Dad about our early years together as a family, and how he experienced various events, like the birth of each child.

Then we talked of my sister Carol’s early diagnosis with retinitis pigmentosa when she was only about 7. Beverly and I were diagnosed in our early twenties, so it did not impact our early years of growing up.

We noted how we each responded to Carol’s early loss of sight. For Dad, there was the shock of being told he should send his daughter off to a school for the blind. Beverly noticed how she didn’t want to ever look clumsy like her younger sister did, stumbling into things or sweeping her hand across the floor to find something she had dropped. As for myself, just a toddler at the time, I had no conscious clue of this shadow that had fallen across the face of us three sisters who would all go blind slowly across the decades to come.

Now our conversations with Dad have begun to trace the early days of lives altered by blindness. My heart has been pierced as I note that my sister Carol in some ways had to carry her blindness alone as a little girl. She didn’t know what it was to see better. She only knew she tripped into things when others didn’t. She knew she was somehow different.

But emotionally, where do you put the stigmatization of having to run around the outskirts of the sport field while your classmates play and look at you oddly? Mom and Dad obtained exemptions like this for her gym class. But no one could know all she had to navigate as she bumped into other students in the dark hallways, trying to find her locker. She put her head down and pushed forward. She just did the next thing, plowing through the best she could.

It is a consolation to re-collect these memories as we gain new insights. We are listening together to our unique but similar life vignettes:

• How we tried to hide or minimize the effect of our waning sight.
• How we pushed ourselves to not feel different.
• How we colluded with denial.
• The sadness of feeling helpless.
• The sorrow of not being the one who can help others in practical ways.
• The insights gleaned from being an outsider; being the different one.
• The pain of the sharp furniture corners.
• The electrical current running through my gut as I hear, for the first time in detail of Carol being knocked unconscious from a bike crash.

And now we can’t stop. It is like, loop by loop, we are knitting a sweater together. We are connecting stories and gaps in our own memories and experiences. I think there were ways that our lives ran on different tracks, and our blindness didn’t join us together as much as it could have. But now, a doorway has opened and something sweet is happening as we listen.

This work of excavation is turning on lights of understanding and compassion. All three of us currently see less than five percent of what a sighted person sees. Yet what we actually can see can be confusing to both us and others.

The retina of the eye is an extension of the brain, and where there are gaps in vision, the brain tends to fill in that gap, making the person with retinitis pigmentosa think they can actually see more than they can. We navigate in familiar settings with relative ease, so that at times others think we see more than we do. Beverly’s daughter, who lives with her, once said, “Mom, I keep forgetting you can’t actually see.”

So, our experience is one of feeling “normal” and yet sometimes not normal at all. As John M. Hull says in Notes on Blindness: A Journey Through the Dark, “It is so hard to be a normal person when one is not a normal person.”

For example, for practical reasons we have to limit the number and types of things we would like to do. Everything, including social interactions take more energy for us. Our days can be interrupted in hundreds of unexpected ways where a solution require sight. Just now I asked one of my housemates to come and deal with a yellow jacket in my kitchen.

Our path is often hindered. Our lives are not marked by efficiency in the physical world.

I am drawn to the words of Henry David Thoreau, “Pursue some path, however narrow and crooked, in which you can walk with love and reverence.” It is now an unexpected goodness to be walking in a new way with my two sisters in our “less than normal” lives, with reverence and love.

–Miriam Blank, Lancaster, Pennsylvania, is a professional counselor, spiritual director, and certified life coach.  In the past Miriam worked 15 years as a registered nurse and certified nurse-midwife. She is author of the prior post, “Body Fading, Essence Soaring.”