Live Through This

Once Was Blind

“Full focus” meant more to me than just being able to see.

    Illustration by Marjainez.

    Illustration by Marjainez.

    You’ve probably heard someone say that eyes are the “windows to the soul.” I’ve never taken that adage too seriously. I’m what doctors call monocular, which means that only one of my eyes has 100 percent functionality. When I was three years old, my right eye was diagnosed with an underdeveloped optic nerve and poor muscle movement and was declared legally blind. None of this, in my case, is curable. Even today, my left eye sees perfectly, but my right one can make out only shapes, color, and brightness, and has a blind spot on one side. That eye has been breaking my heart open ever since my family was told that it was “abnormal.”

    After my diagnosis, doctors and prescriptions dominated my life. My parents, determined to find a cure, ran me through hand-eye coordination exercises and researched miracle surgeries in Russia. I found all this fuss about my eyesight deeply disorienting, since I had never been bothered about it before I was told there was something “wrong” with it. But after that, I couldn’t shake the feeling that my monocularity meant that there was something wrong with me. I felt incomplete, defective. I yearned to live in “full focus,” though I couldn’t imagine what that would be like.

    My anxieties intensified when I started school, and people started asking me about my eye, which crosses slightly (especially when it’s tired). My stomach would twist and turn when other kids commented on my “cross-eyes” and the very fashionable accessories that I had been prescribed for them, like the eye patches I was supposed to wear at all times to strengthen my sight—one in black that made me look like some sort of child pirate, and one ghastly “nude” version that resembled a Band-Aid and clashed with my darker skin—and a much-hated pair of thick-rimmed bubblegum-pink glasses. It was not a cute look, a fact I didn’t need to be reminded about by my classmates.

    I was supported and cared for at home, but my overachieving family feared laziness more than bullying—the main instruction they gave me about my eyes was not to use them as an excuse not to excel. If I was going to have only one eye that worked, I remember my mom telling me, I had better use that eye to do exceptional things, and to make sure it and I looked fabulous doing them (this may have contributed to my hatred of those glasses). It’s like what Olivia Pope’s father says to her on my favorite show, Scandal: “You have to be twice as good as them to get half of what they have” if you’re a black woman—or, in my case, a black woman with a disability—who wants to be successful in a world that isn’t always receptive to you.

    As soon as I started school, I pushed myself constantly to work extra-hard at everything I did, even when it was time to rest or ask for help. I studied for inhuman hours and still received less-than-stellar grades in geometry instead of confessing that it took me longer than most people to read math problems, and I regarded every mistake or average mark as a sign of defeat. When I did well at my work, well-meaning family members or teachers often made comments like “Wow, look at all you’ve done with [insert whatever academic achievement here]. Just imagine what you could do with two perfect eyes,” not knowing I was tormented by that very idea—that I was missing something that I was convinced would make me stronger, faster, and more efficient.

    As I grew up, I raged at anything that my vision was supposed to keep me from doing. Throughout middle and high school, I tempted fate and played tennis, field hockey, and other sports involving flying objects coming at my face. I felt a dark pride about not wearing my protective lenses while my opponents were literally charging towards my blind spot, which went against the advice of every one of my doctors about protecting my good eye. They warned that an accidental athletic injury could cause me to completely lose my sight, which terrified me, but my fear of not being able to do what everyone else could was even greater.

    I rarely wore my everyday glasses, which to me were big, ugly reminders of my inferiority to other people, but despite my best efforts, I couldn’t ignore my monocularity into nonexistence. I felt incapacitating shame whenever I bumped into a wall I didn’t see, walked into a stranger on the street, or missed a detail on an assignment because I was too embarrassed to admit that I couldn’t see the blackboard. I couldn’t tell the difference between acknowledging the reality of my experience and “not trying hard enough.”

    My years of denial came at a high cost. In college, I would respond with clipped matter-of-factness when a new roommate would curiously ask me why my eye would get lazy before bed, and would only ever address my disability when I was forced to appeal for extra time on tests. After graduating, I continued to downplay the issue as best I could. Then finally, a few years ago, after absorbing decades of stress, my body waged a full mutiny: All at once I was overcome with physical fatigue, a hormonal breakdown, gastrointestinal distress, and all-over numbness. Scariest of all, the vision in my “good” eye began to diminish. I was forced to take a break. Not that it was easy: It was humbling and terrifying to be late with deadlines or to bail on meetups with friends for the first time in my life. Plus, I had also killed my ability to simply BE by DOING way too much for way too long.

    This was the wakeup call I needed to finally go see a doctor, after dodging visits whenever possible for almost 30 years. The first one I saw confirmed everything I disliked about those visits: Among other tremendously dickish moves, he said that someone with my condition didn’t deserve the extra time on standardized tests that I need to do well. Apparently, giving someone like me extra privileges just because I only have one functional eye isn’t fair to people with “REAL learning disabilities,” as he put it. My heart smarted from making myself so vulnerable just to have my insecurities thrown in my face. It made me feel exactly as I had in high school, when I overworked myself in order to be “perfect” without realizing I was eating away at the life force I needed to see my ambitions through.

    I eventually found a doctor who treated me with humanity and kindness, but more than that, I finally found it in myself to come to terms with my disability. I learned how to make peace with my eyes, and all the parts of me, the way they are through a spiritual circle called REDLADIES, which I joined in 2011. There, I discovered that my shame about my eye wasn’t really about my physical appearance—it came more from feeling like I wasn’t “whole.” The realization came one day during meditation. We were asked to recall the last time we felt fully “embodied,” or united with our physical selves. I pictured myself as a bright-eyed, smiling, snaggle-toothed child with a wild sandy-colored afro, glasses, tap shoes, skinny elbows. I reflected on that child’s beauty and I thought about the dreams she had for me—none of them had anything to do with overcompensating for anything missing. She was whole, and who was I to call her deficient? All of the clarity I ever wanted suddenly came to me: I needed to love who I was, eyes included, before I could move forward. One of the other REDLADIES described a similar experience as “coming home to” her body, and that is exactly how it felt for me—I came to understand that my eyesight had given me the ability to see the world in a very special and beautiful way.

    Since I’ve always walked around with at least one eye “closed,” I pick up on noises, smells, and tactile sensations very strongly. I’ve had to really use that awareness and intuition to navigate the world around me, rather than relying on what I see. I think this partially explains why I’ve become a very spiritual person, which has been a huge gift in my life. If I had been born with two fully functioning eyes, who knows if I’d feel so connected and present most of the time? For all the limitations it has imposed on my vision, my monocularity has heightened the development of my other senses and my awareness of that which is unseen for as far back as I can remember.

    When I was born, my great-grandma told my parents that I had “hungry eyes”—the same kind of sparkly peepers she saw in babies destined to become quick, smart, and self-possessed adults. She told everyone to get ready, because I was going to be a firecracker. She looked at my eyes and saw my soul.

    Today, I know that she was right. Regardless of my visual limitations—and in many cases because of them—I can see my life, and the world I’m a part of, more clearly than ever. ♦


  • llamalina January 29th, 2014 12:50 AM

    This was such an insightful article. I love how you took your disability and turned it into something that made you stronger. “You have to be twice as good as them to get half of what they have” – so powerful. Great writing.

  • Jamia January 29th, 2014 1:00 AM

    Thank you so much! When I first started talking about it I had no idea how many other people had similar experiences. I told my story at a gathering of women last year and a lady came over crying and told me she had the exact same visual impairment and struggle with it and we just hugged and cried. I’ll never forget it.

  • mimsydeux January 29th, 2014 1:27 AM

    I loved this so much, Jamia. On a slightly different but related note, I was born without an eardrum in my right ear, which resulted in total deafness on that side. Like you, despite several skin grafts to create a barrier against infection, I will never hear out of that side. I totally relate to the feeling of someone telling you that you somehow could do EVEN better with two fully-functioning eyes or ears or whatever and expect you to take it as a compliment – ugh. I love my partial deafness and its hilarious upsides, such as cackling at misheard words that were never funny to begin with! Plus you can argue you never heard what the weekend homework was (unless they write it on the board!) Thanks again for this beautifully written piece – it’s gone straight into my bookmarks! x

  • moniquexh January 29th, 2014 7:31 AM

    i’m completely blind in my left eye and slightly longsighted in my right eye, I went through a similar process as you my eye crosses occaisionally, i had to wear eye patched, and contacts in my left eye which didnt go down well as i was only a baby. I’ve been very self-aware and self-concious about my eye all throughout my life trying to cover it up with any sort of fringe i could create but recently ever since i’ve turned 16 (a couple of months ago) i’ve really tried to embrace it as much as I can, its hard especially as ive started a new school where people arent used to my eye but im working on it.I’ve never let it disturb my learning but use it as an advantage. This article really touched me as i am also a black girl with a disability so thank you for this its made my day and gave me a confidence boost. really hope you see this comment

  • gennyfromtheblock January 29th, 2014 11:25 AM

    Love this article

  • Jamia January 29th, 2014 12:06 PM

    Thanks so much for sharing your stories, you are so brave, bright and inspiring!

  • aliceecila January 29th, 2014 12:27 PM

    i have the same thing, i used to have a ‘lazy’ eye that drifted inwards when i was younger, and now after patches and eye drops it no longer moves. but the vision is seriously impaired, so if my good eye did not function i couldn’t figure out letters/words etc. its quite scary! but I’m glad that you have taken your condition seriously and accepted that it bothers you and affects your life, sometimes its hard to accept that disabilities you can’t see that clearly from the outside do affect you so much!

  • spudzine January 29th, 2014 12:52 PM

    I am so sorry that you had gone through so much stress throughout your life. It must’ve been really horrible when your first doctor confirmed your anxieties. I’m glad that you found better help and that you’re recovering with much gusto! Thanks for sharing your story! You’re really brave!

  • elliecp January 29th, 2014 1:27 PM

    this is amazing. thankyou for being so open…I feel really educated about monocularity and am definitely going to be more understanding of people with similar problems in the future <3

  • nenfea January 29th, 2014 2:07 PM

    I also have vision in only one eye. No one has ever affirmed to me that it was a disability before, but like you I have often felt deeply broken or fragmented (so much so that I’ve been struggling with an eating disorder for a while now).
    Thank you for writing this. It’s deeply affirming to know that I’m not the only one who struggled.

  • whiskeytangofoxtrot January 29th, 2014 2:17 PM

    This is such a good example of how parents, with the most loving, well-meaning and best of intentions, can really very unintentionally mess up our self view! I have a cousin with Cerebral Palsy, and what my aunt, who just wanted her daughter’s life to be “Normal” forgot was that my cousin’s perception of what “normal” is for her isn’t the same as a, what my cousin calls, temporarily able-bodied person. She was born the way she was, and had never known anything different, so my aunt’s well intentioned efforts at making my cousin’s life “Normal” only served to point out to my cousin what she wasn’t able to do, and for a long time not letting her figure out how she could adapt and do things in a way that worked for how her body works. Fortunately, my cousin has a very high emotional intelligence, and has started referring to herself as having a DIFFability, as in her abilities are DIFFERENT, but they’re STILL abilities. I love that!

    • whiskeytangofoxtrot January 29th, 2014 5:44 PM

      Not that having CP is the same as having a vision impairment, and vice versa, I just think it’s important to remember people’s inner workings, and certainly their physical and mental abilities, are often completely different from initial perceptions and assumptions.

  • lilagrace January 29th, 2014 3:09 PM

    Oh my god Jamia, you have no idea how much your article means to me!
    I’m almost completely blind in my right eye. (I can notice changes in brightness. I’d be completely lost if I lost the sight in my left eye though.) A condition I’ve had ever since I was a child. It’s caused me a lot of pain because I’m utterly self-conscious about the lazy eye thing (hugely struggling with it! Makes me so, so uncomfortable!)
    I usually never even contemplate the fact that there are others that might have a similar condition and I just feel miserable. Thank you so much for sharing your story!
    The whole thing has influenced my anxiety and insecurities A LOT! There were situations at school where people would notice – but they wouldn’t just mention it, they would say that it looked weird and disgusting – that I looked weird and disgusting.
    The only time I felt ok (ish) about my eye was when I discovered the world of Tim Burton. In “Corpse Bride” Emily has this thing where her eye pops out every now and again, and she seems self-conscious about it when she asks Victor “It’s my eye, isn’t it?” I never thought it was a weird thing, I felt very deeply for her… so from then on I fancied myself to be a Tim Burton character. That my eye was just part of my character… that it’s ok to be/look that way. (That way of thinking doesn’t work all of the time though… I’m the worst at maintaining eye contact with people! – and I know eye contact is a crucial thing… and the thing about gazing into the eyes of the one you love… can’t imagine that happening to me ever!!!)
    But this article is so, so important and encouraging and … just lovely!
    These things are usually never addressed anywhere, so THANK YOU so much!

  • luanda jabur January 29th, 2014 4:43 PM

    this is beautiful jamia. you’re complete to me

  • Elva January 30th, 2014 12:33 AM

    super relate to this. I have retinitis pigmentosa, which is a degenerative eye disease I inherited. night vision / peripherals= non-existent, and it’s taken me a long time to come to terms with it, ex. asking for help from friends, walking home along at night, telling new partners i can’t see a thing, knowing certain dim-light activities ain’t gonna work for me… thanks for writing about this, it’s a rad, relate-able and candid account.

  • Purple January 30th, 2014 12:46 AM

    this is amazing, thank you

  • Janine January 30th, 2014 8:59 AM

    Thank you so much for this piece! I’m almost blind on my left eye too, and it tends to drift outwards. Due to a couple of surgeries (which didn’t help at all) it has a slightly different colour than my right eye now and it emphasises my condition in a way. I’m 22 now and still very insecure about it. Some people ask me directly why my eye’s so weird, and I tend to like it, because it means I get to explain that I can’t do anything about it (even though that should be clear). I hope I’ll come to terms with all that sometime soon; I’m still terrified to lose the already decreased eyesight in my right eye though.
    (Sorry if I used weird expressions/grammar, I’m not a native English speaker)

  • SWIZZLEFAIRY22 January 31st, 2014 12:32 AM

    When I finished reading this article I burst in to tears. I was born with cataracts in my eyes. When I was younger(like 7) my parents made me wear contact lenses and once was never removed from my left eye. As a result, my eye is about 70 percent blind and IS turning blue. I was bullied terribly over my eyes as a child and I’m still insecure about them. Thank you for making me realize I can still make the best out of a negative situation.

  • Graciexx January 31st, 2014 4:17 AM

    I’m so glad for this article! When I was younger I always felt like the only person in the world who had to wear patches and as a result of that I tried to wear them as little as possible and now my eyesight in my left eye is very weak. It’s not nearly as bad as Jamia’s but it’s still a bit of a hassle.

    Great piece!

  • rapunzoll January 31st, 2014 5:58 PM

    i love this jamia. you remind me so much of alice walker. not just with the eye disability, but your character.

  • Jamia February 14th, 2014 6:26 PM

    Thank you so much, so humbled. Love you all so much.