On Blindness and Marriage

A woman called the Member Services line yesterday asking for books on marriage. Specifically she was concerned about her marriage. She explained that her husband found her to be jealous and insecure, but really, she said, it was because of her blindness, and he should be more understanding. I tried to suggest books on gender differences hindering understanding in marriage, and she said, no, she wanted a book on blindness and marriage. Good luck, lady. She’ll need to write this book. But I felt bad for her, too, as she told me, “I know it’s true! It’s because I’m blind! I was never like this before I became blind! My blind friends say the same thing.”
If only she could understand that blindness is not as much a hallmark of insecurity as the dynamic between the two married parties. If only she could understand that blindness is a physical characteristic, not a mental or emotional state upon which to base excuses. If only making her understand were part of both my job description and my expertise! If only I didn’t feel so personally invested anyway! Sigh


Lost and Found

Dearest Baby,
You’ve probably cried real tears for a while now, but today I
found them particularly heartbreaking. But just as you really cry,
you really laugh, too.
You laughed the first time I got a little bit lost with you. Tad
guides me, and I guide the stroller each day home from daycare, and we
must make quite a parade, walking up North 3rd Ave. and down
Montgomery Street. On Tuesday, we turned up the wrong sidewalk. I
can’t blame this on Tad really, because while he hesitated briefly at
that wrong walkway, he didn’t make a definite turn. I was just glad
to get home. A little alarm in my mind sounded that the sidewalk did
not incline as sharply as it should, but I told myself that it didn’t
incline that much after all. I vaguely noticed that the steps were
different, that the building was on the wrong side of the steps, and
even that someone was watching a British movie (or a movie with
British accents, at least), in our apartment, but then I told myself
that maybe I was really hearing the window of the apartment next door.
In any case, I told Tad to wait at the top of the steps, while I
hauled you in your stroller up the steps, the hardest part of the
trip. You began to crack up, and that’s when I knew, before I
inserted the key into a lock it didn’t fit, that I was at Building
112, the building next door. You laughed again as I hauled you in
your contraption back down the steps, then got you turned around so I
could push the stroller across the small space to Building 110, our
building. Then you laughed as I got you up the correct steps.
Somehow your laughter turned getting lost into a kind of game, even
though I’m sure you really laughed at being carried up and down the
steps like a king or maybe you just enjoyed the surprise element at
the end of your ride. But I’ve never felt comfortable about getting
myself lost and found, and I owe that to you.

Catching Flight: a Tribute to Robert Russell

I am a product support coordinator at Learning Ally, formerly Recording for the Blind & Dyslexic. Essentially, I teach people with visual impairments or learning disabilities and their parents and teachers how to operate all kinds of accessible technology which helps them to read their books. The aspects of the job which frustrate me are the repetition over the course of a day and the fact that there is not a lot of writing involved. My ideal job would involve word-smithing. The aspect of the job I love is the education when it happens. Usually, I’m the teacher, but sometimes I learn, too.
Some of the learning comes from members who are more technology-savvy than I am. These people do exist, though they are fewer and farther between than some of the other members think. (We deal with those who consider themselves experts but who just aren’t, and we have to gently burst their bubbles). But listening carefully opens us to the real experts, and from these people, I gratefully learn and apply the knowledge to other situations when I can.
Then there are those who impart the life lessons, and such was

Our Eyes

I was born prematurely, and my eyes never developed. I say “and” rather than “so,” because I’m not sure if that was a consequence of the premature birth or of something else. I think that by the 80s, they had perfected the amount of oxygen delivered in incubators, but I could be wrong about that. Anyway, because my eyes never developed, I have prostheses inside my eyes, shells which fit over the eyeballs and lend them shape, depth and color. My natural eyes are whiteish, red when they get irritated, but the prostheses make them blue, like those of my birth family. The prostheses are expensive and needed to be remade often when I was little. I haven’t had a new set since I was fifteen, though I’ve gone in for cleaning and polishing a few times since then. I’m sure someday soon the doctor, who has been in practice as long as I have been around, will try to sell me on a new set, and I will cringe, because they are a couple thousand dollars I just don’t have.
The most vivid memory of getting new “eyepieces,” as my mom called them and as I familiarly call them, occurred when I was nine. First, I went to a regular ophthalmologist who had to write a letter on my behalf to get the eyepieces. I don’t know why, as I didn’t at the time. It may have been a doctor’s note for school, or it may have gone to the insurance company or to the doctor who would make them for me. I’m not quite sure. I remember sentences about my having gotten the shells when I was two and “she is now nine years old.” Then after I got my new body parts, my brother, Chet, realized that, since these parts were made for me, I could theoretically get any color I wanted. “You could get purple eyes!” he said with real longing and envy in his voice. “You could get snake eyes!”
Years later, I remember riding in a car operated by disability paratransit services in New Jersey, and the driver said, “You have beautiful eyes. They look just like Jesus’s eyes.” I don’t remember the rest of the conversation, although I am sure some form of prosthelitizing occurred, but I do remember the thought that it served him right that he was unknowingly comparing Jesus’s eyes to pieces of plastic since he was subscribing to the blond, blue-eyed Christ.
For you, blue eyes were transient. They have shifted to brown, just as your sounds have shifted to make way for your concentration on grasping objects, and Goodnight Moon changed from merely the first book I read to you to the first book you held in your hands along with my hands. But for you, brown will be the permanent eye color. I struggle to find pieces of myself in you sometimes, but I think they linger in the shapes of things, while James is in your coloring. Your eyes and forehead and head are shaped like mine, for instance. But your face is very James to me and to most people, except maybe my sister. Your face, hair and eye color and expressions are those of your father. Your skin color is a blend of both of us. Your hair is straight like mine now, but I think that will change as well. I find myself most, perhaps unfortunately, in your temperament, at least your way of getting scared sometimes that I won’t feed you or your sadness about transitions: leaving my breast, being placed on the changing table. But I also find myself in the way you are starting to listen to short books already, your need to hear them again and again and again.
It occurred to me in the shower just now that next time I get new eyepieces, if I can ever afford them, I could change my eyes so they are brown like yours and your father’s. Although I kept my birth name, my eyes could eschew those of my birth family and adopt the look of my new chosen family. But I’m not sure that that is ethical somehow. And I wonder whether there will ever be a time, if only a few moments, when you’ll want your eyes to be blind like ours.


Saturday, December 11, 2010
Arrival, Part 1
Today is your official due date, but you have been in the world for eleven days. You are the most beautiful creature I’ve ever met, and when I feel the bones of your spine like a row of wedding beads or the delicate protrusions of your shoulder blades beneath the slight ripples of your skin or your downy hair or your delicate piano hands which open and close like muscle shells, I am in awe that we made you, that I nourished you, that you are here with us.
On Sunday and Monday, I noticed a lot of bladder activity. I felt like I had to go to the bathroom constantly, rather than just more than usual. Then on Tuesday around 2 AM, I felt contractions about every half hour or so, and I wondered if they would subside. On Monday evening, I had texted Suzanne about the bladder thing. We did the pad test, but it didn’t seem to be water breaking, so we concluded it was probably nothing. “But something is different,” I texted. I texted Stacia, “I’m having really weird early labor, or maybe it’s false labor.” I was so used to the idea of false labor. My sister had been sent home because of it, and I just had no idea what labor would be like for me, and maybe I also thought it wouldn’t—couldn’t—really happen to me. At 4 AM, when your father’s alarm went off for work, I told him I was having weird pain, and I wasn’t sure what it was, but he should call Suzanne. Then I called her and told her maybe she should come over. I told her the contractions felt like cramps, and she asked how long they were. “Well,” I said, “I can’t really tell, because I can’t tell when they are beginning or ending.” Then I thought, “Wait, did I just say that? Doesn’t that mean this is it, the real thing?”
Shortly after that, contractions took off. Or rather I perceived that they had actually taken off a while ago without my realizing, so suddenly I felt their waves, breaking but not really receeding. I told James to urge Suzanne to hurry. Then I went to the bathroom and threw up. Luckily I had only had some water, so not very much came up.
Sometime like an eternity later, Suzanne got there, and after a little while, I somehow got some clothes on, and we went to the hospital. I hoped I would be admitted and given a drug for the pain; instead, the nurse who checked me said, “She’s fully dilated,” and then everything happened fast. Admitting tried to ask me a few questions, and I tried to answer them—at least I answered them in my mind—but I was pretty sure whatever I was thinking was not actually saying. The doctor arrived, and people inserted a couple of different kinds of heart monitors. That’s when I noticed that the baby’s heart rate was down. “The baby’s heart rate is down,” I said.
“Don’t worry,” someone said. “It goes down a little during delivery.”
Then the doctor asked if I was listening and said the heart rate was actually down, and the baby was not getting enough oxygen. He told me that I needed to push the baby out in the next fifteen minutes, or he would need to do a C section. He gave me an anesthetic, broke my water and told me he would use a vacuum to pull while I pushed. He told me to tell him the beginning of each contraction, and suddenly I realized that the contractions did have a beginning and an end and I could pick them up. Everything else began to blur, and all I could say was “Ok” when a contraction started and then groan through the length of a push. People, even James, kept telling me I was doing great and that they could see the head. Whenever James told me I was doing well, I thought, “You can’t see this baby. I’m sure he’s stuck in there, and I’m getting nowhere, and everyone is lying to both of us.” Then on one of the pushes, I felt the vacuum connect with the baby, then felt the head pop free. I have no idea whether I contributed, but feeling the head come out was my first tangible sign that we were getting somewhere. It gave me the strength to get the rest of the baby out, to usher you into the world.

Wednesday, December 15, 2010
Arrival, Part 2
You share a birthday with Mark Twain, Lucy Maud Montgomery and Tayari Jones, as well as with Winston Churchill and some other historical figures I can no longer remember.
Your name is Langston James Simmons. You were born on Tuesday, November 30, 2010 at 8:17 AM. You weighed 7 pounds, 10 ounces when you were born and were 20.75 inches long.
As I think I have written, I have a prejudice against male gynecologists, which was fanned by my mother’s experiences. However, I need to say my attending doctor was a male and was wonderful. I had not actually seen him as a patient before, but he had answered my question about my feet swelling up when I called the “on call” service at night. At the time, I had thought of him as rather brusque. But he was great during the delivery. During the birth itself, he was extremely efficient, verging on impatient but only because of the necessity of getting the baby out, but after the birth, he was methodical but reassuring. He talked to me as he stitched me up, explaining exactly what he was doing, and kept urging me to tell him if I felt any pain so he could apply more anesthetic. I told him that I had come in expecting to get drugs, not a baby just yet, and he said that based on the position of the baby and the urgency of getting him out, it was really a good thing I didn’t. Having gotten the sense that he had just walked onto his shift to deliver my baby, I told him he should get a cup of coffee, and he said, “No, I need a drink!” Eventually, although not right away, they gave me the baby to hold, and after that, I didn’t notice what the doctor was doing. I lay there, blitzed out, holding the baby and listening to Christmas carols on the hospital speakers. Normally I’m very annoyed about the way places everywhere play carols so early in the year. I feel like it marginalizes anyone of another religion and also trivializes the songs by using them for a whole month or two. But I was loopy on whatever mild post-birth drug the doctor put me on, so the songs felt soothingly familiar, almost as if my parents were at the labor with me. It’s worth pointing out this antedote to prejudice as I learn to love that which I sometimes fear, your maleness. That being said, I loved you from the moment you were placed in my arms while I was still being stitched, and I have never wished you to be a daughter. People told me how much they missed feeling their babies inside them once they were born, but for me, having you outside as a reality, not a speculation of movements and rhythms, completed you. You are no longer the “what if.”
Throughout my stay at the hospital, nurses asked me or members of my family if I had support taking care of the baby. Suzanne thought I should be doing everything on my own to impress them, but my mom said, “Just tell them what they want to hear, that you have lots of help. And you do.” So I tried to do both. I don’t think most of them were actually that interested in how I’d adapt things, just that I had help. The exceptions were Evelyn, the labor and delivery nurse about whom I wrote earlier who unfortunately didn’t attend my birth but who came to see me the day after the birth, and a couple of the NICU nurses, Eliza and Lisa, who asked a ton of questions. Lisa, the weekend nurse, seemed really impressed. She ended the conversation we had by saying, “What a nice baby and a great family!”
We were both released from the hospital on December 2. On December 3, you were readmitted, because your bilirubin level had gone up;, you had jaundice. The most likely reason was that the vacuum used during delivery caused a swelling on your head, and though the swelling went down, your bilirubin count kept going up. It was an intense day. We traveled from the hospital lab for your blood test to the pediatrician’s office back to the hospital’s pediatric unit and finally to the neonatal intensive care unit, the latter, because you weren’t hydrated, and the pediatric people couldn’t insert an IV. (The NICU nurse, Eliza, got it on the first try).
It sounds terrible that you were placed in the NICU, even more terrible that you were assigned an isolated room, because you had been outside, but the truth was that it was probably better you were there. The nurses were wonderful, both with your care and the explanations for us, and the isolated room meant a little more room for visitors than other parts of the NICU. My postpartum crash coincided with the hospital insanity. I cried when I worried about needing to find a bathroom on the pediatric unit, worrying about asking the nurses for help when you, not I, were the patient. I cried when you were relocated to the NICU as the nurse began (again) to put an IV into your arm. I couldn’t stay for any of your IV attempts actually. Your father stayed with you and described to me later the futile attempts of the pediatric people followed by the success of the NICU nurse. (“85% of getting the IV in is looking for the vein first,” she commented wryly to your father). Mom knows all about the NICU from my birth, and later I joked that she must have said to me as a baby, “I sure hope your kid gives you the same hell you gave me.”
Once I recovered from the hormone crash, and even though I missed you, I enjoyed sleeping in my own bed. Your father and I visited you several times a day with pumped breast milk, sometimes together and sometimes separately with friends and family members. You were in the hospital until that Monday, and then you were released. The phototherapy and extra hydration helped the bilirubin level to drop, and you are doing well now. Your days are spent eating and sleeping and pooping. Despite your brief respite on the bottle, you are nursing well and have a powerful suck. You live in the moment, and I’m learning to live there too.

Making Memories with Meaning

This article will be published in the upcoming DVI-Q.

Anyone who has worked with people who are blind or visually impaired knows that very few things are learned incidentally or casually. Such was my experience with photography. On my first school picture day, the photographer told me to open my eyes for the camera. At age five or six, I apparently opened both them and my mouth as I smiled. When my mother got the pictures later, she said, “Why were you laughing with your mouth open?” But we also talked about how I had opened my eyes so much that they didn’t look anything like my eyes look in daily life, sometimes closed and sometimes open. I am sure I still look a little stiff in pictures unless they’re candid shots, but I now know not to “stare” at the camera.
At first, I dutifully collected photographs, because everyone else did. I had pictures in frames or in albums or other types of collections which I could show people, and I knew, either from the order I placed photos, the types of frames or the size or type of photograph which picture was who or what. But capturing visual memory did very little to help me preserve my own kinds of memories.
In junior high, we received our first organized yearbooks. I thought the covers were beautiful, but other than that, they did very little for me, even with descriptions of pictures from people: “Here’s a picture of the soccer team or the jazz band.” It was customary for people to write messages to each other in the yearbooks as well. I would ask people to write in my book, hand it to them and wait to receive it back. I asked my mother to read the messages to me so I could transcribe them for myself in Braille.
When high school came and yearbooks became a regular occurrence, I knew I had to revise my method of memory making. My help came in the form of the APH handicassette recorder. I began to tape random moments like band concerts and occasionally class lectures from teachers I admired. And instead of asking teachers and friends to write in my book, I handed them the tape recorder and requested that they talk for me. No one ever told me they didn’t want to talk. Some would write their messages ahead of time and would read it out loud on tape, while others preferred improv. But whatever method people chose, I could return to those tapes and could hear, not only their words, but their voices, which conjured up other memories as I heard them.
I also adapted this technique for assignments which required personal photographs. Instead of making a photographic autobiography, I made an audio autobiography, which incorporated my own narration, audio clips of meaningful moments and relevant background music. When I handed my final project to my English teacher, he was at first a little chagrined by its length, though as soon as my face fell, he quickly apologized and listened to the project for a few days on his commute. He was amazed by the length of time a sound memory can take compared to glancing at a photograph but felt that it was a good experience for him to absorb the meaning of my life in a different way.
Giving students the tools to create memories which they can genuinely understand and appreciate helps them to realize that non-visual memories don’t lack richness, importance or the need for preservation. As StoryCorps says, “Listening is an act of love.” So is helping students to learn to listen.

On Beauty

I’m aware of how many treatises, poems and other written documents share this title, so I’ll make this quick.
Suzanne and I toured your possible daycare (if I can’t find freelance work by the time I need to go back to work) and the hospital where you’ll be born. Both visits were reassuring. Tad did embarrass me at the daycare by getting too eager to see a baby in a glider; he put his front paws up on the edge. I could understand why he was curious, but I hope I made it clear—at least for the moment—that he could not invade someone else’s kid’s space that way. You are another story. I expect you’ll be sniffed and licked many times over.
I left Tad at home for the hospital visit, which also went well. The nurse to whom my coworker introduced me was kind and had a lot of personality, which I think will be helpful during labor. She only said two things which I found mildly troubling, but I was so happy she was eager to help me to care for my baby and not to take him away that I forgave her. She told me that the first day, I should be allowed to room in with the baby but only if a sighted person was there. She went on to say that I would need to learn how to care for him, so I think she really meant an experienced person, but to equate sight with experience is annoying. Still I don’t know any blind experienced parents in this town, so a sighted one will work. And she also said the only thing she felt bad about my not seeing was that I wouldn’t know how cute you are, but she would be sure to tell me. To hear that from an outsider was jarring. I myself have fallen prey to that statement when I told James that it was a good thing he was blind and not sighted when we met, because he might not like me. I meant that I’m not particularly beautiful. Then again, who am I to make slurs on visual beauty, even with myself? It’s true that James might not have liked me, but it could have been for many other reasons, having as much to do with his baggage as a sighted person as anything else. My point is that that comment is pointless, because we didn’t meet then—we met later, and that made the difference. But I’ll know you’re beautiful without seeing you. I will appreciate any detail sighted people can give me about you, but I know you already. I’ll know you better than any of their eyes will know you. And you are beautiful.


I’m hyper aware of the little kids and parents I observe. At the Princeton Junction train station, the parent of a two-year-old asked him or her “how she/he felt about that.” “Happy,” the kid answered. I think they were talking about eating chips. With feeling words, I guess you have to start somewhere. I hope someday, many days, you tell me you are happy.
Then on our corner, a little boy named Jonah was terrified to cross the street. If a car was even on the street, he didn’t want to move. I found out later that before I had reached the corner, his mother had said hello to your father and then said, “Look, he has a stick like grandpa.” Of course, James being James did not correct her. I use correction sparingly myself, but he never uses it, thereby losing a lot of teaching moments. You will know it’s a cane. Anyway, Jonah’s mother asked him why he was scared to cross the street when he hadn’t been scared before, and he said he needed to get bigger. I pictured us there, waiting for years on the street corner while Jonah grew up. I would have my baby right behind him, the seasons would turn and turn, sort of like the movies, and you, too, would wait for Jonah to get big enough to stop fearing the cars. Jonah’s mother told him he was just fine the way he was, and he was almost four. Finally she urged him across, saying, “There’s a plane in the sky, but there are no cars.” When we crossed the street, the mother asked Jonah, without asking me first, whether he wanted to pet the dog. “He’s a special dog,” she explained. “He has really good eyes and helps the woman, because she can’t see very well.”
I know that visual impairment, not blindness, is the default assumption and explanation, and I have to smother my impulse to think people are sugar-coating every time they say I’m visually impaired. After all, she really had no idea. But wouldn’t it have been easier to tell the kid my eyes are broken?
Predictably, given his earlier fears, Jonah did not want to touch the dog. So we just said good-bye and walked our separate ways.