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.

Tuesday, November 15, 2016

Another's Beautiful Story of Partial Blindness

Today, I share and highlight a wonderful piece in The Guardian in which Annalisa D'Innella shares her story of partial vision.

"In order for guide canes and symbol canes to be effective, they need to be understood. Somehow, some time ago, the people who came up with these valuable low-vision solutions only did half the job. They didn’t put the resources needed into raising public awareness and, as a result, the cane has become symbolically too blunt an instrument."

I appreciated this post because D'Innella speaks to the unique experience of being partially sighted. Like D'Innella, I selectively use my assistive devices, including long white canes and my service dog. D'Innella sends a strong and empowering message by confidently navigating the world as she sees fit (yep, pun intended). I am still learning to embrace partial sightedness; depending on my company and context, I often continue to feel self-conscious when I use my cane, even when doing so is assistive.

"Blindness is not binary. It is a rich and fascinating spectrum. Visually impaired people come in many different variations. Some of us have central vision but no periphery. Some have periphery but no central. Some see the world through a window stained with blobs. For others, it is all a blur. We could form a zombie army. But we will probably just quietly get in your way on staircases."
Blindness deserves demystifying. The experiences of people with low vision and blindness are vast and magnificent. For each person, we see and are seen differently. I hope through this and other blogs, advocacy, and open dialog that I can share my story and perspective on blindness. Thank you, Annalisa D'Innella, for sharing yours.

Thursday, November 10, 2016

United We Stand, Divided We Fall

With strong divisions in America – red and blue, rich and poor, white and colored– many would describe America as broken, incapable, and ineffective. These deep divides led to an excruciatingly painful election, and undoubtably more pain to come. Donald Trump successfully capitalized on these fractures; exemplified by the title of his book, Crippled America.

His book is not about serving persons with disabilities. Instead, Crippled America was written by Donald Trump to defend his positions on issues ranging immigration, the Iraq war, and the media. The irony is that Trump is the only candidate from the primaries who didn’t offer a position on disability rights. In total, I’ve observed two instances in which Trump has made overt mention of disability: (1) Using this politically incorrect and offensive term, “crippled,” to describe how “broken” America is, and (2) flagrantly mocking a reporter for “using his disability to grandstand.” The first example reflects ignorance and poor taste. The second reflects insensitivity, presumptuousness, and intolerance, all of which makes my skin prickle with fear. The only other public statements Trump has made are peripheral, stating that he aims to reduce the overuse of social security and disability. This stance undermines the authentic need for services. And this is what we know about Donald Trump and his perspective on persons with disabilities.

We all have reason to be afraid. So many of you, my friends, loved ones, and allies, have shared how unsafe you feel in the aftermath of the election. With you and for you, I hurt. I, too, feel afraid, disappointed, frustrated, concerned,, and ashamed.  

Donald Trump has harassed nearly every marginalized population in the country.  As a woman, I feel the glass ceiling has been bolstered and my reproductive rights are in jeopardy. As a person with a disability, I feel uncertain how this country will view me and if my government will continue to mandate accessibility. I acknowledge my privilege, as these fears pale in comparison to those fearful for their lives, their rights to stay in this country, their rights to marry. We need to support one another, and have genuine conversations about how to mobilize to ensure that the civil rights and liberties of all Americans are protected. We need to speak up when we hear hate.

These last two days have been somber, difficult, and dumbfounding. I have had a hard time processing, and have found it challenging to tear myself away from the media. I hesitated to articulate my profound sadness and outrage; I’ve lacked the words for my grief or the distance to maintain respect for “the other side.” I am striving to open my heart and open my mind. This openness does not preclude my rejection of hatred. I will protest and use my voice to be an advocate for inclusion.  And, I will also hear the strong and inspiring words of Hilary Clinton and Barack Obama when they remind us to unite. Uniting means seeing one another, supporting one another, defending one another.  Uniting means fighting, together.

Sunday, November 6, 2016

Running Forward, Not Away

A year after my diagnosis, I started running. I had never been an athlete; I was the nerd who competed in Youth in Government, Speech and Debate, and Mock Trial. But, I wanted to improve my health and fitness. I could barely run a quarter of a mile without keeling over exasperated and exhausted. I scoffed at – and resented - people who claimed to enjoy exercise. To me, running felt like torture. Nonetheless I was set on getting in better shape; I became determined to run a full mile without stopping.

While my vision got weaker, fitness became a way for me to get stronger. After a year of “running” (more like speed walking with short excruciating bursts of jogging) combined with yoga, pilates, and strength training, I accomplished my goal. I ran my first race: a 5K. Surrounded by enthusiastic masochists seeming to enjoy the frigid early morning, I huffed and puffed to the finish. Although I did it, I was the slowest of my friends. I didn’t feel an overwhelming sense of pride. I felt tired, worn, and defeated.

I kept running, but I didn’t sign up for another race; running was for me. It was my way to disconnect from pressures at work and school, or conflicts with family and friends. I ran through my feelings. I ran through pain. I ran to disappear inside myself, retreat to a private world where I could overcome anything. Running provided me the time and space to be in my body. I learned to listen to my muscles, feel my breath, trust my stride. I started to crave how running encouraged me to be mindful and present, attentive to my surroundings. I improved my mileage, ticking up to longer runs – 7, 8, 9 miles. Without realizing it, running became something I began to truly enjoy.

As running became a more prominent part of my life, I considered running a longer race. Living in the Bay Area surrounds me with countless beautiful courses, and it was an enticing fitness challenge. Yet, I worried that a race would strip running of its intimacy. It would convert my solitary respite into a crowded competition. Candidly, I doubted myself. Would I be able to navigate the course? Was it feasible to train on my own? Was I strong enough, dedicated enough? Could I actually be a runner?

Several years later, and just a few months ago, I ran my first half marathon, accompanied by a friend. Running not one but 13.1 continuous miles made me feel empowered and proud. Similar to my first 5K, I huffed and puffed to the finish. The last couple miles were agonizing. I felt tired and worn, but very far from defeated.

Training for and running a half marathon helped me prove to myself that I am still mentally and physically able. As someone who often feels failed by my physical body, pushing myself to run farther and faster verifies my strength and stamina.  Running makes me grateful for what my body can do, rather than limited by what it cannot.

When people hear I run, often I get a response riddled with concern, “Do you run alone?” Yes, I run alone. I am deliberate about my running routes. I only run in daylight. I map my paths ahead of time.  I have a scanning and tracking strategy while I run to ensure I do not miss obstacles. Like most things I do, I run differently by running with low vision. I've now run a few smaller races on my own, always on familiar courses, and I now trust I can run more.


I’ll be running my second half in the spring. The first half I ran to prove to myself that I am able to overcome, that I am not physically limited, that I am capable. The second half I am running because I can. I can and will run forward.