Going blind has its challenges, but it's not as scary as you might think

Going blind has its challenges, but it’s not as scary as you might think

April is Women’s Eye Safety and Health Month.


As told to Nicole Audrey Spector

We were children when our parents noticed something was wrong. During the day, we were lighthearted and curious: identical twin sisters exploring the world and touching everything we could see. But at night, we have become shy and cautious of our surroundings.

Our parents took us to an ophthalmologist who diagnosed us night blindness. But further testing when we were 5 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.

It was absolutely impossible to see where Big Bird was going without moving his head. 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 vision loss 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 to us about it because We I didn’t want to talk about it and We he would get angry. We actually wanted to talk about it and ask more questions, but we didn’t know how.

Our parents whispered to our uncles and aunts and teachers about our eyesight. A special teacher started visiting us at school during some lessons. No one explained to us why this person was there, but we knew she had something to do with our eyes. Her presence made us embarrassed. We didn’t want to look different from other kids.

So we kept our vision loss a secret.

When we were teenagers, we had lost a significant amount of our peripheral vision while maintaining clear central vision. In many ways, we have thrived academically and socially, but kept quiet about our deteriorating vision. We had never met anyone who suffered from vision loss, so our idea of ​​blindness was based on the TV character Mr. Magoo and movies like “A Christmas Story” in which Ralphie’s parents cried in horror at the idea that their son would go blind.

When our friends were celebrating the milestone of getting a driver’s license, we were devastated that we couldn’t be a part of this cultural rite of passage. Our closest friends knew why we didn’t get our licenses, but we kept everyone else in the dark.

Our vision continued to deteriorate as we entered college, and we were often blind when people greeted us on campus. Our peers sometimes got the idea that we were stupid, rude or conceited. There were times when one of us saw the other subconsciously ignore someone who was trying to get his 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’ve done it very well. We didn’t talk about going blind at all. Not even our high school sweethearts, who we’d end up marrying years later.

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

As we started our careers, our shared disability got harder to hide. But we haven’t stopped trying because we’ve continued to believe the false narrative around us that being blind or having low vision is shameful.

It seems that people greatly misunderstand what it means to go blind. They may think they can picture it just by closing their eyes and imagining their way through life in blackest darkness. Our vision loss experience was not like that at all. It happened slowly over time, and as it happened, our bodies naturally compensated in many ways. We also took the time to learn blindness-related skills, including mobility training and orientation.

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

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

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

As we dealt with our pain separately, we’ve had moments where one of us was able to encourage and uplift the other, and then we flipped over. We have begun to lean into our pain, anchored by our faith in the love and connection we experience when we share our stories with one another. Today, we help others through our work in mental health, one as a therapist and the other as an educator.

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

The truth is, we are just like everyone else. We all have our ups and downs and supporting each other through these ups and downs is key. When we read the stories of others and share our own, we break down the barriers of shame, disconnection and fear. And through breaking down those barriers, we face our fears and open ourselves to healing and connection.

Do you have real women, real stories 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 HealthyWomen’s official policy or position.