Wednesday, November 23, 2016
Bad Vision Days
Yesterday was a bad vision day. One of the major misconceptions about disability and chronic illness is that the daily experience is consistent. Just like symptoms of depression or Crohn’s fluctuate, as does my vision. Within a single day, my vision predictably varies based on lighting and fatigue. With a progressive disease, my vision gradually declines over the years. A less obvious and less predictable feature of my vision is that there are good days and bad days. On bad vision days, for whatever reason, I see worse.
In one of my classes, the professor requested we break up into small groups to conduct miniature meta-analyses. He provided tables from which we were to obtain the necessary statistical values. This table – a relic from a paper published in the 1980’s – was pixelated and blurred, even to the sighted. As I tried to enlarge and convert the text to speech, it became apparent that this document was not accessible in any way. Whether I was having a bad vision day or not, I doubt I would have been able to read the minuscule (size 8?) font. I cowered over my computer, holding my face a mere inch from the screen. I made jokes to my fellow group members - a common defense of mine. Nonetheless, my self-doubt and frustration was mounting. With my eyes vacillating in and out of focus, I could tell I was in for visual strain for the remainder of the day.
Following class, I walked into my lab space and asked the question, “has anyone seen where K ran off to?” Unbeknownst to me, I was looking directly at her. She responded, “who, me?” and I awkwardly explained “the lighting in here – the backlit window with everyone’s dark silhouettes! Sorry, blindy fail. Yes you!” I surprised myself; normally I find I can recognize familiar faces from this mere 8-foot distance: not today.
I was seeking help from K because I was having difficulty troubleshooting some errors in a computerized experimental task. Being honest, my difficulty resulted from navigating a computer with lackluster accommodations. Nonetheless, K came to the rescue, quickly tweaking my code and clicking between windows, between programs. I passively stared at the screen, not disclosing that what I perceived was a fuzzy gray blur. I feigned interest and intrigue. After K fixed the bugs, I tried running through the task a handful of times. One of many challenges I encounter programming computer tasks is that my pilot testing is cursory. I cannot actually do the task or determine if my data is collected correctly. Following a few feeble attempts, I again asked to “borrow a pair of eyes.”
My final obligation of the day was a team lab meeting. While discussing a potential novel approach for data collection, the primary investigator (lead of the research) glanced at me asking why I was nodding. I of course had no idea she was talking to me. I awkwardly looked left to right, and mumbled “uh me?” This was followed by what I can only imagine was a look of confusion - of course, I couldn’t actually see the expression. I then fumbled through an explanation of my thinking.
The awkwardness emerging from turn taking repeated over the course of the meeting. At one point, I wanted to share my thoughts on a study design. We are a small enough group; we often opt out of hand raising in favor of a casual group discussion. Although both present challenges to those with low vision, in this case I repeatedly inadvertently began talking over the primary investigator and other team members. My self-consciousness got the better of me. The embarrassment shut me up; I kept my comments to myself for the remainder of the meeting.
Walking from campus in the dark of night, I had my hands full with a jacket in one hand, my phone and keys in another. Rather than shoving my belongings into my bag to free up a hand to use my cane, I decided it was a short walk, mostly well lit. I hadn’t fully pieced together the theme that I was having a bad vision day. I tripped down the stairs. I accidentally weaved on and off the sidewalk, having a hard time recognizing where the cement ended and the grass began. I used my hand to guide around a concrete wall. I walked slowly – well slowly for me – and approached the train station.
Upon arrival at the train station, I was greeted by two of my lab mates. I hadn’t seen them. I let them lead the way – to the train, on the train, transferring trains. I wonder if they realized I was doing this strategically. Normally it is seen as a gesture of chivalry to urge another to take the lead. For me, it is a gesture of desperation. I needed them to guide me.
When I got home, the burden of my bad vision day hit in full force. I was debilitated by an eyestrain headache. As an absurdly busy aspiring academic, eyestrain headaches are often one of my chief complaints. When they hit, the pain is overpowering; I cannot do anything but rest my eyes. This means no more writing papers or reading articles or typing progress notes. This means I have to listen to my body and accept that sometimes, I cannot keep up my juggling act, in which I balance teaching, clinical work, research, and my interests in fitness and writing. It is often in these dark times – literally, as I rest with a cool rag covering my closed eyes – I question my abilities to persist.
A few months ago, a fellow member of the low vision community said to me that the limitations of our vision are self-imposed. He spoke to the idea that we limit ourselves, and that our shame and self-stigma holds us back more than our vision ever will. I hate my bad vision days, and feel physically constrained by the limitations in my vision. And yet, the worst part of my bad vision days is not my vision at all; it is self-doubt. Bad vision days lend themselves to self-criticism and pessimism. This morning, after recuperating, I was reminded and relieved that like all bad days, bad vision days end.