A Blind Writer's Notebook Cancer Vs. Blindness
Blindness can be a pain in the ass, and infantilizing, even depressing sometimes, but it is not cancer.
This is A Blind Writer’s Notebook, a monthly column by M. Leona Godin about her experiences as a writer and the monolithic trope of blindness.
You’d think worries about cancer would be your number one preoccupation when you visit the radiologist for a biopsy on your boob, but if you’re blind, not so much. Last August, I had my first mammogram, my first abnormality, my first biopsy, my first cancer scare. The radiology appointments came in quick succession and each time, the receptionist refused to talk to me directly. Each time, he said to my partner Alabaster, “What’s her name?”
Finally, on the day of my biopsy, I confronted him, which did not go well. The only good news was that I ended up more furious than fearful.
Alabaster kept saying, “Don’t let him get to you.” And I knew he was right, but I wasn’t able to calm down until I pulled my iPhone and wireless keyboard from my bag, put my earbud in my ear, and wrote out the event with many expletives.
There is something incredibly satisfying about typing angrily—violently, you might say—when you are a blind person who has just been treated like a child or a moron or a bitch. I have not always been blind. My eye disease presented itself as a very slow calamity, through many bands of the sight/blindness spectrum, over the course of decades.
First came the loss of the words on the blackboard from the back of my fourth grade classroom, which sent us to the optometrist, who could not find glasses to correct my vision from 20/30 to normal. Then came the reading difficulties as my fovea—the center of the eye where detailed vision happens—chipped away, and the many visits to the ophthalmologist resulted in a diagnosis of retinitis pigmentosa—which turned out to be not quite right, but that’s years of human genome sequencing down the line—and, by the time I was seventeen, I couldn’t read print books anymore, even with bright light and rested eyeballs. I could see the words on the page, but I did not have the cones clustered in the center of the eye to see the detail of letters. Let’s get this straight right now: My world has never been blurry.
Consider your blind spots. “ Each retina has a surprisingly large blind region where the nerves and blood vessels leave the eyes, called the blind spots,” Richard Gregory writes in his classic text Eye and Brain. “They are so large one can make a person’s head disappear when they are sitting across the room!” But under normal circumstances, you do not notice them because the brain fills in the information that’s not there.
My blind spots started in the center of my vision, and were not places of blurriness, but simply places where not a lot happened. As my disease worsened, the blind spots multiplied, but it was never a darkness. Even now, when I perceive almost nothing of the visible world, my visionscape is not blurry or dark, it is a pixelated mess of pulsating light.
During my many years as a visually impaired person, I periodically tried to keep journals. I bought Sharpie pens and wrote. But I could never write big enough. When I wrote, the letters disappeared as soon as they were written. I could write in my journal, but I could not read my journal. I wrote and, like magic, saw the words disappear into peripheral vision chicken scratch, pages and pages of writing I could not read.
Enter the iPhone—and the angels sing hallelujah!—a universal portable technology that comes ready for blind people to use. If you have an iPhone you can try this right now: Go to settings, general, accessibility, and turn on VoiceOver. Voilà! Your phone will speak. Or you can just ask Siri to do it for you. But put your earbuds in, please. I hate the sound of other people’s VoiceOver babble.
Thanks to my magical iPhone, I can give you the contents of my angry radiology note :
This asshole at Lenox Hill, every time we’ve come here says, “What’s her name?” to Alabaster. This time Alabaster says, “She’s right here.” And the fucker says, “What’s your name?” And I tell him. And then he’s talking to someone on the phone, but I didn’t realize, and I say, “Excuse me?” He ignores me and Alabaster tells me he’s on the phone. Then he says, “Sign and date this for her.” I say, “Please talk to me. I’m an adult.” “Sign and date this,” he says, and Alabaster shows me where to sign and date. There is no further exchange except that I say, “Thank you for your apology.” When we get to our seats, I hear him say to his coworker, “Some people are so nasty.” And now, here he is, handing my paperwork to Alabaster! “Have her give this to the technician when she gets called.” This is the kind of shit that happens when you’re blind. What a jerk. The upshot is that now I’m more pissed than scared.
I don’t think I was “nasty,” but my tone was probably not very pleasant when I said, “thanks for your apology.” It is so difficult not to be peevish in situations like these. I wish I knew how to deal without presenting like the worst kind of person—the snarky grumpy center of the universe kind.
On the other hand, the receptionist did not seem to know how to talk to a blind person. Perhaps he was afraid of me?
In a 2014 New York Times opinion piece called “Why Do We Fear the Blind?” a teacher of blind children shares how she was prompted to write the essay by a woman at a party who asked, “How do you talk to your students?”
After explaining that the students were not deaf, the woman said, “Yes, I know they’re not deaf. But what I really mean is, how do you actually talk to them?”
It’s a matter of communication: How could you possibly have a conversation with someone who lives in a totally different perceptual universe?
Look, I get (and remember) that a large part of being sighted is making eye contact with your interlocutor, but a large part of being human is being adaptable. And empathetic. How would you feel if someone acted as if you did not exist? Or as if you were a child? Or a piece of unwieldy luggage?
In his book Touching the Rock, John Hull describes his experiences as a newly blind man, which he dictated into a tape recorder over the course of four years. From his July 16, 1984 entry entitled “ Does He Take Sugar ?” he describes being referred to in the third person, and the frustration it inspires:
This situation often seems to arise when I am getting in a car with a group of other people. “Will you put John in the back with you?” “No, I’ll put him in the front with you.” “All right, you put him in then.” At this point I interjected, crying out with an exceedingly loud voice, “John is not put anywhere, thank you very much. John is asked if he has any preferences about where he sits.” At this, all my friends laughed uproariously and were covered with apologies and confusions.
Unlike my unlovely receptionist, Hull’s friends knew him, and could forgive his peevishness and realize their bad behavior. Still, as Hull concludes this entry, “It is so easy to marginalize a blind person; indeed, in certain situations it is almost impossible not to.”
Perhaps that’s part of the fury of my biopsy day. Yes, it’s true that I need help filling out paperwork, and signing my name. It feels terrible not to be able to do these things for oneself. And yes, I needed help to find a seat in the crowded waiting room. All these little things chip away at one’s dignity.
When you are disabled, I think it is not uncommon for a huge chasm to open between the complexity of one’s inner world and the monolithic simplicity people see: The vastness of existence on the one hand, and a blind person on the other. The frustration is sometimes so great that it feels explosive. Having a temper tantrum in these circumstances is not out of the question. Thankfully, I was able to write instead.
The furious touch-typing—perhaps slam-typing is more correct—calmed me, and by the time the technician arrived, I was subdued and polite, which never could have happened if I’d not had my iPhone and wireless keyboard, nothing to do but stew with my pounding angry heart. This was a good thing, because if I had still been angry, I probably would have taken it out on the technician, who turned out to be the polar opposite of the receptionist. She was smart and sensitive and we got on famously. She had an unusual name, and perhaps she would not want me to publish it here, so I will call her Jane, but I remember her real name well, and with gratitude.
Jane offered me her arm and walked me out of the waiting room and into the business end of the radiology clinic, and the normal fears of a biopsy came flooding in. Once I got my robe on and was in the room where the procedure would take place, she handed me an apple to squeeze. It was a very nice foam stress apple that I did indeed squeeze a lot in the coming hour.
Jane asked me for my paperwork, and it turned out that we were supposed to have filled it out in the waiting room, but, of course, our disagreeable receptionist neglected to mention this. I told her that I’d had a bit of a run-in with him, and he’d not told us anything. She was very kind about helping me and apologized on his behalf.
“Some people just don’t know how to behave around people who are different,” she said. “I’ll have a talk with him.”
“Fire his ass,” I thought gleefully, and said politely, “Thank you. I would appreciate that.”
The doctor joined us, my boob was clamped, and, after several scans, they found the suspicious calcifications. It was time for the actual biopsy.
They’d warned me to eat a good breakfast, which had been no problem since I’m a stress eater, and it turned out that the reason was because they’d had a lot of women faint. At first I didn’t feel much, and I’m guessing the needle, or tweezers, or vacuum, or whatever, was super small because the tissue sample was microscopic, but the sound was huge. The whirring drilling sound ended each time with a zap that took my breath away.
I’m not sure, in a situation like this, if it is better to see or not. I’m guessing it’s scary in a different way.
During the biopsy, which the doctor performed, Jane had her arm around me and was comforting me, and I squeezed my apple. I’d asked earlier what color the apple was, green or red and she said it was red, although I have to say it was shaped more like a Granny Smith than a Red Delicious. I usually don’t like red apples, but I made an exception.
It hurt, burned a bit towards the end, but then it was over, and they said I did a great job. “One of the best,” Im sure they told me.
The minute we stepped out into the insanity that is Midtown Manhattan, I started crying. I’m not sure why, and I don’t even really remember it. Alabaster reminded me; he’d been surprised at its suddenness. I guess all the stoicism had been a strain. We went home and then came the waiting.
Many of you know this tense limbo of waiting to hear if you or a loved one has the big C. And perhaps that is why I begin this column with this story. I’m here to tell you that blindness can be a pain in the ass, and infantilizing, and frustrating, and even depressing sometimes, but it is not cancer. It may offer some tribulations that are not part of “normal” people’s existence, but they are not life-threatening.
Four days later, I called the office because I’d not yet heard back, and the doctor had given me permission to bug her. I called, and she shuffled papers and found my results, and the biopsy came back benign! So I don’t have cancer, and I’m still blind. And it’s fine. Totally doable.