Christine Exley, PhD
As part of Blindness Awareness Month this October, I’m participating in the Foundation Fighting Blindness’ #ShareYourVision campaign.
I have Retinitis Pigmentosa (RP), which causes me to gradually lose my vision. I struggle to see in low light conditions (i.e., night blindness), and I have lost most of my peripheral vision (i.e., tunnel vision). Even with contacts, my remaining central vision is very poor. Over time, RP is likely to cause me to completely lose all of my vision.
The notes taken by one of my ophthalmologists summarizes the beginning of my vision loss well: “Dr. Exley doesn’t remember seeing the stars as a child….” I always find that note to be bittersweet.
Bitter, because I remember my family’s big trip to the Grand Canyon when I was in middle school. I remember one night when we all went outside to look at the stars. I remember straining to see what everyone was talking about, convincing myself that I could see some twinkle as well. At the time, I had no idea that I had RP. For all of my childhood, my vision was good enough that I never even had a suspicion that my vision was more limited than others. But it makes sense now. I couldn’t see the stars because my vision was already deteriorating. I don’t think I have ever seen the stars.
Sweet, because my ophthalmologists are perhaps the only people who refer to me as “doctor.” While they are not technically incorrect to call me “doctor” (since I have my PhD in Economics), first names are much more common in my profession. I’ve of course told them to call me Christine. But they kindly insist. I know it’s a sign of respect, and as odd as “Dr. Exley” sounds to me, I appreciate it. I appreciate it because, unlike so many experiences I have had —and unlike so many more experiences that others with disabilities have had — my ophthalmologists never talk down to me. They talk to me as if I am a peer, a colleague. Despite almost never receiving good news at my ophthalmology appointments (it’s a progressive condition after all), I enjoy going to those appointments. My ophthalmologists are perhaps the only people who truly understand the depths of my current and expected vision loss, but they do not treat me differently because of it.
For most of my life, people didn’t know about my vision loss. For a long time, even I didn’t know about it. But even after I learned about it, late in college, I hardly mentioned it for the next decade. Even now, as my vision has become more severely limited and more difficult to “hide,” I often don’t tell people about my vision. I rationalize my silence by convincing myself that I just don’t want to make others feel bad or uncomfortable.
When I’m playing with my daughter at the playground and walk into a pole, the path of least resistance is to laugh and say “goodness I’m clumsy today” to the slightly-concerned looking parent of some nearby toddler.
When a nurse gives me a form to sign and I cannot find the signature box, it’s easier to fib and say “this font size is too small for me to read without my glasses, could you please point out where I should sign?” (I omit the fact that I’m already wearing my contacts.)
When a friend or family member shows me a photo of their kid or puppy on their phone, I say “cute!” I’m sure their kid or puppy is cute! But, for all I know, they could be showing me a photo of a potato.
When meeting with a colleague or student in my office and they comment on how nice my 60-inch computer screen is, I say “indeed — it’s awesome!” When they ask how to get such a computer screen themselves, I simply smile and shrug, rather than saying “well, you could try going blind, but I don’t recommend it…”
Even when I choose to convey a certain level of severity to my vision—e.g., by noting that I’m legally blind—I let people assume that my poor vision is stable, rather than in a perpetual decline.
I don’t expect people to somehow intuit my vision loss without me explaining it. I don’t even expect people who know that I have vision loss to remember it. Sometimes, I forget that there are things that I cannot see. But, the sad truth is, I mostly don’t speak up about my vision loss because I’m worried about what others will think about me. I worry that my ophthalmologists are the exception. I worry that others will think less of me.
I am a short young woman trying to become a tenured economics professor. I know how easily some folks already dismiss me — how much easier would it be to dismiss me if they know I’m going blind?
Blindness is wrongly associated with ignorance. Think of how the word “blind” is commonly used — we talk about blind spots, blind loyalty, and blindly following the crowd. You may even use it as an insult: “it’s like the blind trying to lead the blind.”
That said, I also realize how I’m not helping the problem by staying silent. It’s true that I’m still working on getting tenure. But, it’s also true that I have my PhD in Economics from Stanford University and that I’m an Associate Professor at Harvard Business School. I’m undeniably privileged.
It’s time for me to speak up about my vision loss.
Speaking up has its benefits. One of the most rewarding interactions I’ve had as a professor involved meeting a student who recently learned she was also losing her vision. She was so grateful to meet someone who was pursuing a related career and facing similar problems. I get that. I didn’t meet anyone with vision loss until I was in my late 20s.
I told this student what my undergrad advisor (Professor Shawn Humphrey) told me when, during my senior year of college in 2009, I found out that I had RP.
Just like Shawn had said to me, I told her: “I’m sorry. That sucks.”
Just like Shawn, I didn’t add caveats about hopefully there being a cure in time, or how I was sure it wouldn’t be that bad, or how she should still be grateful for X, Y, or Z.
I just said it sucks. Full stop. Because it does. It sucks.
I also didn’t lower my expectations for this student. Just like Shawn maintained full confidence in me, I maintained full confidence that this student would conquer the world (and she is). I didn’t say it would be easy or hard. But, my faith in her ability was not affected — at all — by learning that she was losing her vision.
My vision has worsened quite a bit since 2009. Back then, I used to go months without thinking about my vision. Then, as I would trip on the uneven sidewalks while running, I started to think about my vision every few weeks. Then, as I gave up playing soccer and gave up driving, I started to think about my vision every few days. Now, as I strategize about how to get from point A to point B without bumping into anyone, I think about my vision a few times every day.
In many ways, I have been surprised at how easy some “losses” are to get over. Not being able to see when it’s dim—there are flashlights for that! Not being able to drive—thanks Uber and Lyft! I currently have a workaround for everything I need to have a workaround for.
What is harder to grapple with is the future. The future in which I’ll see even less, perhaps not at all. I know others have very successfully faced such futures, and I know that I should have faith that I will, too.
But I cannot help looking at my 2-year-old daughter and wondering how I could ever get over the loss of not seeing her smile.
I wasn’t always sure I wanted kids. My husband and I were both “on the fence” for a long time. We laugh about that now. There has been no bigger joy in our lives than our daughter.
I know it’s cliché, but I had no idea how much love and how much joy one small being could bring me. I didn’t know that level of joy was even possible. My daughter is awesome. She is determined. She is hilarious. She is kind. She is clever. I want nothing more than to see—yes, literally see—her life unfold. I don’t need much vision. I just want to hold onto a few pixels of vision, just enough to peer through a tiny crack of a window.
I know that window may fully close. And, if it does, I’ll still be grateful, and I’ll figure it out.
But there is also some chance that the window can remain open.
The best chance for that comes from the Foundation Fighting Blindness. Because the science to prevent many types of vision loss is here. All that is needed is the funds.
If you are able to donate to the Foundation Fighting Blindness as part of the #ShareYourVision campaign, please visit their website to make a gift. Let’s keep as many windows open for as many people as we can.