So What’s Up With My Eyes?
Sometimes it feels like there’s an elephant in the room. It happens when I show up as a guest presenter or when I’m on a Zoom meeting; when I’m giving that first lesson; when I’m introduced to a new acquaintance or out on a first date; or at an audition or meeting with colleagues. At first glance, I look pretty “normal” (what normal means I’m not sure). But it can become awkward when I walk by someone without acknowledging them, or when I look like a deer in the headlights as I search for that person who greeted me from a distance. Often my eyes look a little wonky, especially when they suddenly move all over the place. One of my eyes always moves inward, cross-eyed, when I need to read something on a screen, a sign, my phone, or notebook. My thick glasses magnify my eyes which further accentuates this oddness.
I have low vision, and I’ve had it all my life.
My relationship with my vision has evolved over the years, and especially in recent years as I serve on two committees: fundraising for the Habilitas Foundation, and Concordia's Accessibility Advisory Committee. I grew up knowing nothing about ableism and EDI (Equity - Diversity - Inclusion). I just accepted that I was different. As time goes on, I celebrate being different more and more. However, as recent politics shift in the direction of abolishing EDI programs, I am more compelled than ever to share my story.
I have spent many years passing as a person with normal sight. Ironically enough, in doing so I was isolating myself. I developed coping mechanisms so as not to draw attention to my lack of sight, but these actions took a great deal of time and a toll on my energy resulting in lost opportunities to connect with others. I was fearful of participating in activities in my own way because the nature of my participation would require some accommodations. Not wanting to inconvenience others, I found it very difficult to ask for help.
As I talk more openly about my lack of sight, I feel more connected with those around me. I have come to understand that the elephant in the room is fear of the unknown.
How will someone react to my disclosure I wonder.
“How will Irene react if I ask her about her eyes?”
Then there are the microaggressions, comments that are unintentionally hurtful:
"Wow you really are blind!"
"Yeah, I need new glasses too!"
"You need new glasses."
"Here, let me do this for you, and so on."
"It's right there! Can’t you see it!"
It is ironic that music programs focus on visual learning - reading musical scores and following the conductor. Some students are shamed if they learn songs by ear from recordings. I remember struggling to sight read in choir, or notate music theory exercises.
When I had a blind student in my class, I had to think about how to help them. I recorded and sang through songs and choral parts for them, and I encouraged them to play what they heard on the piano. When conducting, I asked them to sketch the formation of the choir in their mind so they could communicate through gestures. Begin the rehearsal by getting to know the formation from the podium by calling out to each part to sing so they could hear where the voices were coming from.
I came to recognize and appreciate my abilities to problem solve and concentrate when I started improvising. I was also when I finally embraced the idea that I was musical, and that my ease with improvising is something I acquired through a lifetime of figuring out how to navigate in a visual world. In my heart, I always knew I was musical but I was often questioned about it because I was a bit of a slow and awkward learner. I thought that if I could read music it would fix all my doubts. It did not, and my low vision made me work even harder. Yes, I love music theory, yes, I am so glad I learned to read music. Now, I am more interested in developing my ear, and trusting my ear.
Improvising feels like coming home for me. I love getting lost in sound. I did that when I was a kid. I could play with my voice and listen to music for hours. I could do character voices, and get lost in an imaginary world of sound and color.
So How Much Can I See?
Many people ask me this question. I then explain to them how I see.
I am basically monocular. When I engage in visual tasks such as reading or finding my way around, I use only one eye. That is because I see double when I consciously look with both eyes. I always favored my right eye because it was the eye that was operated on first when I was a child.
I can’t see things clearly, so I have to peer, or use magnifying glasses and large print. It is difficult for me to recognize faces if someone is more than 3 feet away. I can’t read street signs unless I use small binoculars. I can’t pick out objects that are pointed out to me easily. I have very little depth perception. When I go indoors on a sunny day, it takes my eyes at least 10-minutes to adjust, so I am essentially blind when I first enter an indoor space from daylight. Most annoying is that my eyes constantly jiggle so everything I see looks like it’s moving. Unless I am looking up at a clear blue sky, I never see the world as still. Finally, now as I get older, I am always looking through cobwebs.
… are you tired yet? Thanks for reading this far!
So what is up with my eyes?
I was born with bilateral congenital cataracts
Drumroll… Here’s my grocery list of related eye conditions
Aphakia: a condition in which you're missing the lens of one or both of your eyes. You can be born that way or lose the lens due to an injury. Or your doctor might remove it during an operation for cataracts. When you have aphakia, it's hard to see things clearly with the affected eye(s).
Strabismus: a disorder in which both eyes do not line up in the same direction. Therefore, they do not look at the same object at the same time. The most common form of strabismus is known as "crossed eyes."
Esotropia is a type of strabismus (eye misalignment) in which one or both eyes turn inward. Although the condition occurs most commonly in infants and children, it can develop at any age.
Amblyopia (also called lazy eye) is a type of poor vision that usually happens in just one eye but less commonly in both eyes. It develops when there's a breakdown in how the brain and the eye work together, and the brain can't recognize the sight from one eye.
Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern.
Oscillopsia is an illusion of an unstable vision, made up of the perception of to-and-fro movement of the environment. The notion of oscillopsia refers to the interaction between the physiological mechanisms resulting in movements of the eyes and those keeping a stable visual perception.
Floaters are spots in your vision. They may look to you like black or gray specks, strings, or cobwebs. They may drift about when you move your eyes. Floaters appear to dart away when you try to look at them directly. Most eye floaters are caused by age-related changes that occur as the jelly-like substance (vitreous) inside your eyes liquifies and contracts.
…If you go this far, I’m impressed!
I was recently invited to speak at an EDI conference for a large organization. I prepared a short video - it’s called “A Glimpse”
In Conclusion
Please do not feel sorry for me. Please do not tell me how amazing I am to have accomplished what I have accomplished.
I just want to live authentically and wholly. I don’t have anything to prove anymore. I am sharing my story so you can feel more comfortable when you are around me, and I can feel more at ease if I need to ask you for help.
I also hope that you might be more accepting of your own limitations, and drop the unreasonable expectations you may have on yourself.
Here is an inspiration quote from Brené Brown:
Belonging is being accepted for you. Fitting in is being accepted for being like everyone else. If I get to be me, I belong. If I have to be like you, I fit in. -- Oct 23, 2017
I hope you can close your eyes and play your instrument or sing your song.
The elephant has left the room!