Parents began noticing something was different with us when we were toddlers. By day, we were carefree and inquisitive twin sisters exploring everything around them; but by nightfall, our behavior changed drastically: becoming shy and wary of everything around us.

At age five years, our parents took us to an ophthalmologist who diagnosed night blindness. However, further testing when we reached five years old revealed something different.

Remember sitting in a doctor’s office and trying to follow Big Bird with our eyes while someone in a white coat moved a small figurine around?

No one could see where Big Bird was heading without shifting our heads, while the doctor took notes in silence. Tension filled the air in the room as we knew something was amiss – we knew we were failing our test!

So we discovered we had Retinitis Pigosa (RP), an uncommon condition which gradually causes vision loss over time.

No memory exists of our parents discussing having Recurrent Paraneoplastic Syndrome. Later, however, our parents would explain that they avoided discussing it because we wouldn’t listen and become upset; although in truth we longed to talk more openly and ask more questions – yet didn’t know how.

Parents had spoken quietly to our aunts, uncles, and teachers about our eyesight. A special teacher began visiting certain classes at school – without explanation as to why this person was there – yet we knew she had something to do with our vision and made us self-conscious; not wanting to seem different from other children in class.

So we hid our vision loss.

At this stage in our lives, many of us had lost significant portions of peripheral vision while maintaining clear central vision. Although we did well academically and socially despite this change, it went unremarked upon. Since we hadn’t met anyone living with blindness directly yet, our idea of blindness came from movies like “A Christmas Story” where Ralphie’s parents expressed shock over Ralphie becoming blind as children.

At a time when all our friends were marking this cultural rite of passage by getting their driver’s licenses, we felt devastated that we couldn’t participate. Only close friends knew the real reason behind why we weren’t getting one – everyone else remained unaware.

As college began, our vision continued to deteriorate and we often failed to see when people waved to us on campus. Peers sometimes assumed we were rude or stuck up. At times one would notice the other unconsciously ignoring those trying to get her attention, while later one may say: ‘Oh that must have been my twin sister!

Hiding our vision loss wasn’t always easy, but we managed to do it admirably. We never mentioned going blind even to our high school sweethearts — who would eventually become partners of ours later on in life.

Sometimes when something troubling had happened with our eyes, we would share what had transpired with one another and try to comfort one another – this sometimes provided comfort, as an identical twin knew exactly what it felt like having eyes that didn’t function like other people’s; but sometimes this only increased pain and shame as we felt trapped within an endless cycle of secrecy.

As we began our careers, our shared disability became more difficult to conceal; nonetheless, we never gave up trying as long as the false narrative that being blind or having low vision was something to be ashamed of existed in society.

People often misunderstand what it’s like to become blind, thinking they can imagine it simply by closing their eyes and picturing life in pitch-black darkness. Our experience, however, was far different: vision loss occurred gradually over time as our bodies adjusted naturally in many ways while also taking time to develop mobility training and orientation skills as necessary.

No doubt some aspects of blindness can be difficult, and grief is always part of loss, but in our experience losing our sight hasn’t been an ordeal like many might expect it to be. Blind people can excel in careers, date and get married; travel; have adventures; raise children – these are all achievements blind people can reach in life – including us two.

Just after we became parents ourselves, we finally stepped back out from under years of denial and hiding. Being homebound prevented us from socializing easily or purchasing items at stores – life often felt lonely until Jenelle came up with the brilliant idea to share our stories on a blog. Shortly thereafter we pursued experimental treatment in Vancouver via 10 days of acupuncture treatments – read all about that experience on our blog!

While we initially observed some improvements, these were insignificant and quickly faded. Soon we became overwhelmed with feelings of disappointment and despair over what would soon become blindness; to cope, one of us began seeing a therapist; along with writing blogs, therapy helped us heal faster than expected.

As we each worked through our pain individually, there were times when one could encourage and uphold the other; then vice versa. Over time we learned to lean into our feelings of loss together while trusting in love and connection that come from sharing stories together. Now both working in mental health, one as therapists and the other as educators.

Unfortunately, there remains an attitude that viewing blindness as pitiful is still prevalent. Not only is such an attitude not true; but it harms blind communities as a whole. We want people to move away from thinking blind people are helpless while simultaneously upholding an “inspirational” or “amazing” stereotype associated with participating in everyday tasks.

Truth be told, we’re all human. We all experience ups and downs in life, so supporting each other through these trials is key. By reading and sharing each other’s stories and our own, we break down barriers of shame, disconnection and fear in order to face our fears head-on and facilitate healing and connection between us all.

Do you have an inspiring Real Women, Real Stories to share with us? Reach out.

HealthyWomen presents Real Women, Real Stories based on the authentic experiences of real-life women. Any views, opinions or experiences shared within these narratives do not necessarily represent HealthyWomen policies or positions.


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