Going Blind is Challenging, But Not as Scary as you Think

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April is Women’s Eye Health and Safety Month.

As told to Nicole Audrey Spector

We were toddlers when our parents noticed something was off. During the day, we were carefree and curious — identical twin sisters exploring the world and touching everything we could see. But at night, we became shy and cautious of our surroundings.

Our parents took us to an ophthalmologist who diagnosed us with night blindness. But further testing when we were 5 years old revealed a different story.

We remember sitting in a doctor’s office, trying to follow Big Bird with our eyes as a man in a white coat moved a small figurine around.

It was absolutely impossible to see where Big Bird was going without moving our heads. There was dead silence as the doctor took notes. The air in the room was tense. We didn’t know exactly what was going on, but we knew something was wrong. We knew we were failing the test.

And that’s what led to our diagnosis of retinitis pigmentosa (RP), a rare disease that causes loss of vision over time.

We don’t remember having a conversation with our parents about having RP. Later, our parents would tell us that they avoided talking with us about it because we didn’t want to talk about it and we would get upset. In truth, we longed to talk about it and to ask more questions, but we didn’t know how to.

Our parents spoke in hushed voices to our aunts and uncles and teachers about our eyesight. A special teacher started visiting us in school during certain classes. No one explained to us why this person was there, but we knew it had something to do with our eyes. Her presence made us self-conscious. We didn’t want to seem different than the other children.

So we kept our vision loss a secret.

By the time we were teenagers, we’d lost a significant amount of our peripheral vision while retaining clear central vision. In many ways, we thrived academically and socially, but we kept silent about our worsening vision. We had never met anyone experiencing sight loss, so our idea of blindness was based on the TV character Mr. Magoo and movies such as “A Christmas Story” where Ralphie’s parents wailed in horror at the idea of their son growing up to be blind.

When our friends were celebrating the milestone of getting their driver’s licenses, we were devastated about not being able to be part of this cultural rite of passage. Our closest friends knew why we didn’t get our driver’s licenses, but we kept everyone else in the dark.

Our vision continued getting worse as we entered college, and we often didn’t see when people waved to us on campus. Our peers sometimes got the idea that we were ditzy, rude or stuck up. There were times when one of us would catch sight of the other unconsciously ignoring someone who was trying to get her attention. If one of us missed a wave on campus, we’d later say, “Oh, that must have been my twin sister.”

Hiding a disability like vision loss isn’t easy, but we were great at it. We didn’t talk at all about going blind. Not even to our high-school sweethearts, who we’d each end up marrying years later.

Occasionally, if something upsetting happened related to our eyes, we would talk to each other about it. There was some comfort in sharing with an identical twin who knew exactly what it felt like to have eyes that didn’t work like other people’s — but sometimes the pain and the shame seemed to double as we felt trapped in a cycle of secrecy.

As we began our careers, our shared disability became more difficult to hide. But we didn’t stop trying because we continued believing the false narrative all around us that being blind or having low vision is shameful.

It seems that people greatly misunderstand what going blind is actually like. They may think they can imagine it by just closing their eyes and imagining making their way through life in pitch-black darkness. Our vision loss experience has not been like that at all. It’s happened slowly over time, and as it’s happened, our bodies have naturally made up for it in many ways. We’ve also taken the time to learn blindness skills, including mobility training and orientation.

Yes, some parts of going blind are difficult, and grief is a part of it, as it is in any loss. But for us, losing our sight hasn’t been the nightmare that many people imagine it is. Blind people can excel in their careers, date, fall in love and get married. We travel, have adventures and raise children. The two of us have done — and are doing — all these things.

It wasn’t until we became parents ourselves that we finally began to face years of denial and hiding. We were stuck at home and couldn’t just hop in the car to meet up with other moms or grab a needed item from the store. Life often felt lonely. Then Jenelle had the idea to begin sharing our stories on a blog. Shortly after we started blogging, we decided to pursue experimental treatment in Vancouver, and we wrote about our 10 days of acupuncture treatments.

While we initially noticed some improvement, it wasn’t significant and the improvements didn’t last. We quickly began to spiral into feelings of disappointment and despair over the reality of our impending blindness. To cope, one of us began seeing a therapist, and through both therapy and blogging, we began to heal.

As we worked through our pain separately, we had moments where one of us was able to encourage and uplift the other, and then we’d flip-flop. We began to lean into our pain, anchored by our faith in the love and connection that we experience when we share our stories with one another. Today, we’re helping others through our work in the mental health field, one as a therapist and the other as an educator.

Unfortunately, there’s still a narrative that going blind is pitiful. This type of thinking is not only false, but it also harms the blind community. We want people to move away from the idea that blind people are helpless, as well as the equally false attitude that blind people are “amazing” or “inspirational” for participating in everyday tasks.

The truth is that we’re just like everyone else. We all have our ups and downs, and supporting one another through those ups and downs is crucial. When we read the stories of others and share our own, we break down barriers of shame, disconnection and fear. And through the breaking down of those barriers, we face our fears and open ourselves to healing and connection.

Have a Real Women, Real Stories of your own you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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