The Blind Feeding the Lame: Growing Disabled with Dad * Essay & Live RISK Performance

This essay about the very different experiences my father and I had growing disabled first appeared at Catapult last June. I performed a storytelling version for a live taping of the Risk! Podcast, which aired in December in an episode called “Quality Time.” Scroll down for the performance followed by the essay.

I republish both versions here in honor of my father, Lee Goodin, who died a year ago tomorrow. It was, however,  a year ago today that I received the call that told me he was dying. My stepmother had used his phone to call and so when I answered, I was prepared to receive birthday wishes, but instead received her no-nonsense, nurse-practitioner announcement that he was in the hospital and not coming out. So my birthday on August 18th and his deathday on August 19th are forever linked in a two-day bittersweet celebration of life.

You can read more about my dad in my personal obituary for him and get a taste of his writing in this post that includes three of his many letters to the editor published in the San Francisco Chronicle. But for now, please indulge my need to tell you about our respective disabilities and the joy of sharing delicious food and booze no matter the obstacles…

Performance

Photo of Leona Godin on the large Bluebird Theater stage taken from the balcony. She stands alone with a mic and her cane, Moses, wearing black and sunglasses.

Essay

Now my dad is disabled. The military man, the world traveler, is in a wheelchair. A degenerative neurological disease has turned his feet into blocks, his hands into mittens. But we still can drink together, his blind daughter finding herself singularly helpful in these new circumstances. In his kitchen, where his wheelchair cannot fit, I slosh Beefeater into glasses, and, with directions called out from the dining room, I locate the pâté, the crackers, the Dijon mustard, the knife, and return to the table, not realizing that a strange moment of intimacy, such as we’d never shared before and will likely never again, is about to take place.

*

I barely knew my father from the time I was three, when my parents got separated and then divorced, until I was nineteen and surprised us both with a visit.

While I grew up in San Francisco with my mother, he was stationed in Thailand, Turkey, Italy and Germany. I saw him twice during those years. I believe the first time was when he and my mother signed their divorce papers, perhaps I was five, and we took a ferry ride in the rain to Sausalito. We went into a glassblower shop and that luminous fire magic took my breath away. He bought me a glass Cable Car and a bird. My mother drove him to the airport and I have a memory of waving to him until he disappeared. Immediately I crumpled to the floor, and I remember the feel of that Ford’s floor and the look of the child weeping as if I could be the protagonist and spectator both.

The next and last time I saw him as a child, I was nine. My grandmother died and he returned to San Francisco for the funeral with his new wife. Not long after that, I started losing eyesight. It was just the beginnings of the eye disease that would eventually make me blind. For decades after diagnosis, I was visually impaired, and it was as a visually impaired person that I met my father again, after several years of dwindling correspondence had resulted in us finally losing touch.

*

The night before we were to set out with our giant backpacks for a three month Euro-Trek, my best friend called to tell me that she had fallen off the wall at Ocean Beach. She’d been drinking a farewell bottle of cheap wine with her boyfriend when her hat blew off. Reaching for it, she’d slipped. “I hurt my knee,” she told me and said that it wouldn’t change a thing. It turned out she had torn a ligament, and that fact changed everything.

At that time in the early nineties, plane tickets to Frankfurt were among the cheapest, which is how we ended up flying into the city next to the town of Wiesbaden, where my father was stationed. Upon arriving in Frankfurt with my crippled best friend, in the early morning hours, with the lurid airport porn shops and bar that served us, the foreignness was overwhelming. They’d given me a wheelchair to push her and our packs around, but once we left the airport, how I’d get her anywhere came crashing down. I decided finding the bus to the Wiesbaden military hotel was the only viable option.

For the next two days, my best friend did nothing but lie in bed and moan. Once I tried to go out by myself but it was a disaster. My low vision made it impossible to carry out any plans, as I couldn’t read street signs or bus numbers or maps–this was long before GPS and iPhones helped to level the playing field for visually-impaired travelers. Although I’d had no intention of contacting my father, and probably wouldn’t have if my best friend hadn’t been out of commission, I’d agreed to take his number.

If large black letters were set on a small expanse of nothing–a 4X6 index card for example–I could still read using my peripheral vision. With a cigarette in one hand and trembling fingers, I dialed the number. I listened to the foreign ringing until the voice, somehow still unmistakable as my dad, picked up, and I said, “Hi Dad, It’s me.”

“Oh hello.” He may have even said, “Hi kiddo, what’s up?” Apparently unruffled.

I said, “I’m in your neighborhood and thought I’d give you a call.”

“What neighborhood?”

“I’m in Wiesbaden.”

He asked if I had plans for the evening. I looked over at my best friend prone on her little twin bed, and said that I was pretty open.

A year or two ago, after my dad was put in the wheelchair but before his chronic infections had progressed to where they are now, during one of our pleasant “liquid lunches,” I asked him if he’d had forewarning about my arrival from my aunt and uncle. It had suddenly occurred to me, after all these years, that his nonchalance could have been attributed to them mentioning my trip to Europe. He assured me that he had had no idea that I was coming, but that being career military primed him on being prepared to deal with unforeseen events.

On our first father daughter date, we went for dinner, which was a miracle of conviviality. We smoked and drank wine and talked as if no years had passed, no childhood lost. We held hands in the misty streets and he kissed me goodnight. Such is the strangeness of the human psyche, that the exhilarated bounding I did down the enormous, crystal-dripping hallway of the hotel built for international delegations–at that late hour empty but for me in my exuberance of finding a father–sits in my heart alongside one or two of the most romantic moments of my life.

*

After my dad and his wife retired, they moved back to the states, first to a tiny town in California’s Gold Country, where he became mayor, and then to his native San Francisco, where he still lives. As I turned from a visually impaired person into a blind person, my dad metamorphosed from an able-bodied person into a disabled person. The neuropathy progressed from the soles of his feet up to his knees, and from the tips of his fingers halfway up his arms, leaving him without sensation. When he stopped being able to feel the pedals of his Jeep, he had to give up driving. His wife continued to work as a nurse practitioner. She still works and goes to the theater and travels, while he has degenerated into helplessness.

They’d been accustomed to go on grand vacations for over thirty years–to more than a hundred countries and to all seven continents, and now she does these trips by herself. Putting my dad in what he calls “my kennel”–a small group home for elderly people in Pacifica.

It saddens me that for several years, my dad has spent his days sitting in his wheelchair, afraid to venture out alone, reading the newspaper and watching Netflix, all day while she’s at work. On more than one drunken occasion, he told me, “If I thought I could manage it, I’d shoot myself in the head.”

*

Nearly 1 in five Americans have a disability, and the vast majority are older people, according to the U.S. Census. When I was visually impaired, I never thought of myself as disabled–the very idea of it would have been insulting. As I’ve aged into my disability, both in terms of acuteness and familiarity, I’m proud of being a marginalized group on the rise. Proclamations of non-discrimination pertaining to diversity still do not often include disability, but that is slowly changing. Unfortunately my dad is of the wrong generation to benefit from this change. I hope to live to see it blossom.

Disability is the one variety of diversity that can strike anybody at any time, so why not prepare people to embrace it as difference rather than affliction? This shift in attitude will likely benefit you. At the very least, it may help you cope with your end of life disabilities, or those of your loved ones.

Having started on my road to disability at a young age, I feel strangely equipped to deal with what’s to come. In his 1911 essay “The Handicapped,” Randolph Bourne insists on the benefits of growing up and into oneself and one’s (dis)abilities:

When he [the handicapped man] has grown up, he will find that people of his own age and experience are willing to make those large allowances for what is out of the ordinary which were impossible to his younger friends, and that grown-up people touch each other on planes other than the purely superficial. … He will have built up his world, and have sifted out the things that are not going to concern him, and participation in which will only serve to vex and harass him. He may well come to count his deformity even as a blessing, for it has made impossible to him at last many things in the pursuit of which he would only fritter away his time and dissipate his interest. He must not think of “resigning himself to his fate”; above all he must insist on his own personality.

Even after more than a hundred years have passed since Bourne’s essay appeared anonymously in The Atlantic Monthly, it seems to me that we have yet some growing up to do. When will we finally recognize ourselves as precariously able-bodied, tending towards disabled, instead of constantly comparing ourselves to some mythical potent youth?

*

Last night my dad called to tell me that he’d made his decision. For almost a year he’d been facing the choice to either cut off the feet that keep getting terrible infections from wounds that do not heal because of his lack of feeling down there, or continue to get infections that will hasten his death. He reminded me that when we’d first had this discussion, I said to him, “The choice seems to be your feet or your life.”

It had struck me as obvious. But he’s resisted all these months, and yesterday brought finality. “I’m saving my feet and sacrificing me.”

Although the choice has been complicated by his weak heart that might not survive the amputation surgeries, it has always been more than loss of life that frightens him, I think. He prefers to die whole and intact. The idea of being footless would irrevocably launch him into the land of the disabled.

“No heroics,” his wife had told me last week, I think to prepare me. “He’ll go home and get what’s called palliative care.”

I was meant to understand that route was terminal. My dad confirmed it in a subsequent conversation.

“When do you go home?” I asked.

“Maybe a week, maybe a month,” he told me, “but don’t get your hopes up. It doesn’t look favorable. Don’t dwell on it.”

Between his nurse practitioner wife and his no-nonsense attitude all the conversations in the past weeks that touch upon his death, up to and including last night’s, have been singularly devoid of tears. It feels strange even to write about this finality with no surface emotion. I know that the loss of my dad will be painful, but I also know that he’s not been living the life he loves for a long time, and that the ground has been laid for all of us to let him go. Besides being world travelers, my dad and his wife had been avid skiers, avid theater goers, avid devotees of the good life, and I had, through many transcontinental cocktail conversations and on my bi-yearly visits, enjoyed that with him. I will miss our liquid lunches and our drunken conversations, but I know that he is already missing so much more.

*

I place the pâté, mustard, breadsticks, prosciutto, crackers, a knife, a plate, and lots of napkins on the table, my dad directing my movements. “There, yes, put it there. Open that prosciutto.”

He had once been a wonderful cook–the sort that took pleasure in serving up multi-course meals for ten or twelve intimates–and so this fumbling with food in front of him provokes more than a little self-consciousness. I do my best with the butter knife to slice the thick Trader Joe’s plastic, muttering a narration of my efforts, though he can see my progress perfectly well. I finally get a hole in it and rip the rest. “Now what?”

He informs me that the prosciutto must be wrapped around the breadsticks, like flesh over bone, and we get to work.

“Ah, shit” he says, and I hear a delicate snap. These are dainty breadsticks, no thicker than my pinky. Without feeling in his hands, all digital movements must be guided by sight alone with no tactile input. Hence, it’s awfully easy not to know one’s strength in the way of breadsticks and crackers.

I on the other hand complement this lack with my tactile-heavy relationship with the world. I ask if I can make him one, and he agrees.

I take a thin breadstick and a thin slice of prosciutto and dexterously roll it up. It is much easier than rolling joints or burritos. I hand it to my dad who smacks his lips. Then I make one for myself and I smack my lips. We continue for a few rounds.

I ask what the plan is for the pâté, and he instructs me to take a cracker, spread pâté on it and top it with Dijon. I do this and try to hand it to him. But, not being able to see, I cannot put it in his fingers, and not being able to feel, he cannot grab it without cracking it in two, so after a few frustrating attempts, and much pâté lost in the effort, we hit upon the expediency of me holding the cracker in the direction of his face, whereupon he grasps my wrist and shoves the cracker (and sometimes my fingers) into his mouth.

We do this over and over and the gin helps us forget the unsanitary way in which I grip the knife and thrust it first into the pâté  and then into the mustard and sort of push lopsided toppings back onto the crackers with my fingers, which, nine times out of ten end up in contact with my dad’s mouth. And each time he grunts his approval in a closed-mouth yum-yum kind of way, I know I will never forget the way he let me help him –at least for a few minutes–enjoy one of his last tastes of the good life.

What I See/Saw I: Hallucinations (Essay 2 of #52essays2017)

I am blind, but that does not mean I live in darkness, and I’m not just talking metaphor here. These days the visionscape confronting me sparkles and undulates, with greater or lesser intensity, constantly, veiling the world beyond with simple and complex hallucinations.

pixelated closeup of Godin's eye with green filter

The brilliance of my visionscape is not less intense in a dark room than in a brilliant sunny outdoors, only there are maybe more facets to it: there is darkness around the edges that gets washed out in a white out of a brilliant day. The pixelated cosmos in which I dwell sometimes takes on a color scheme, as if the whole thing were lit by stage gels. Sometimes I wake up and find my day washed neon pink, other days are teal. Sometimes the palette divides into contrasting colors, red occupying much of the upper left quadrant and green the lower right, or other times it is orange and cobalt.

My recent forays into the wonderful world of aromatics has proved to be a way to take control of what had heretofore been quite out of my control. Apparently I’m not very original in my synesthetic reactions but it’s fun to open a bottle of lavender essential oil and see my world turn violet, or peppermint and watch it turn electric blue.

Beyond or behind all the shimmering and swirling, I get glimpses of the world some people might call the objective reality of sight. That objective reality reveals itself to me now as blobs of light covered over by a fabric of swirls and pulsations.

For me there is no dark. No black. Never.

There is brightness and then there is more brightness. The light of a lamp lingers on my destroyed retinas for minutes, so that even if I have seen the lamp on–verified its onness by rolling my eyeballs to place the lamp in one of the chinks of far peripheral vision that still remain to me, when I turn it off, a blast of light remains to trick me, and sometimes, I must use my hand to verify that the bulb is not still making heat. But even when the physical light remnants disappear completely, there is the overwhelming perception of a pulsating kaleidoscope of pixelated light, leaving the dark room anything but dark.

The tears in the fabric of disease that remain to me to allow actual, external light to enter my visionscape are sometimes a help and sometimes a distraction. Oftentimes I can see points of light in my far periphery, lightbulbs in the distance that can help guide me in the right direction, but I cannot see the furniture that stands directly in my path. As I mentioned in my previous essay, my poor eyesight has never had anything to do with blurry vision. Always it has been a lack of information.

Much of what I see, especially in my peripheral vision, is undulating hallucinations that resemble the wavy floaters of the normal eye (as I remember them). They skitter randomly as sickle-shaped phenomena that are unrelated to external reality, and do not change much from day to night, light to dark, open or closed eye. In their crowdedness, and in their geometric breathing, they remind me of staring at wallpaper on acid way back when. I haven’t done any psychedelics for many years, I promise, but my visions have gotten pretty trippy!

One time, maybe five or six years ago, I was laying on my bed in the daytime in a hungover state, and suddenly a lurid parade of eighteenth century ladies jittered across my visionscape with painted lips formed into ironic smiles. They looked in my direction as they passed–an endless train of cartoonishly garish ladies moving across my field of vision. I remember feeling a vague sense of uncertainty but no fear. The vision lasted a minute or two at most, presenting (I understand now) my bored visual cortex with some much-needed stimulation. I had more vision then than now, but that was around the time that I think of myself as moving from being visually impaired to blind, so that although I could still see the bright window quite clearly behind the hallucination, and maybe a bit of the mirrored vanity beyond, I did not spend a great deal of my life looking at stuff.

I did not name this a hallucination or recognize it as such until my buddy Benjamin asked me if I hallucinated–that he’d heard on NPR about a condition that affects people that lose their vision late in life. That’s when I remembered the ladies in my bedroom and named it a hallucination. Since then I’ve had many more such experiences and have read Hallucinations by Oliver Sacks. “Silent Multitudes” is the first chapter of that book and is dedicated to the phenomenon.

Sacks begins the chapter by describing Rosalie, a woman blind for many years, who suddenly starts experiencing hallucinations and fears for her sanity. To his question “what do you see?” she answers:

“‘People in Eastern dress!”…In drapes, walking up and down stairs … a man who turns towards me and smiles, but he has huge teeth on one side of his mouth. Animals, too. I see this scene with a white building, and it is snowing–a soft snow, it is swirling. I see this horse (not a pretty horse, a drudgery horse) with a harness, dragging snow away … but it keeps switching…. I see a lot of children; they’re walking up and down stairs. They wear bright colors–rose, blue–like Eastern dress.'”

Sacks assures her that she is not losing her mind, but that she is experiencing Charles Bonnet Syndrome, named for a Swiss naturalist, who first described his father’s late-life visions and then experienced them himself when his own vision failed.

Sacks distinguishes between simple and complex hallucinations, which I have come to understand in my own experience. Under normal waking conditions, the simple hallucinations of undulating and pixelated designs breathe and skitter around with such constancy that I do not think about them unless I’m trying to put something into my periphery where I still can perceive some light and movement–when they seem to be in the way of my perception.

My complex hallucinations (as Sacks calls those that have recognizable content, such as people or animals–nameable objects and exhibit the crowding suggested by the chapter title “silent multitudes”) usually come on in the early morning hours after a night of insomnia. They appear without any mental prompting and seem to have nothing to do with my psychological state, if the wakeful tiredness be excepted. When they pop up, it is as if a switch turns on and the whole of my visionscape shifts for a few moments into an outrageous circus of jerky, cartoonish acrobats, jugglers, horses, and countless other abstract big top-inspired shapes and unnamable creatures that tumble with great rapidity into the center of my vision and back out again, as if they are in a tangled loop that keeps repeating with subtle and complex differences. The quality is of a cartoon or of an old-school video game.

One creature that makes an occasional appearance in both the insomnia-inspired complex hallucinations and in my everyday jumble of simple hallucinations is a red Space Invaders critter that marches from my far left periphery towards my nose.

This is so frustrating to write about because it seems weirder and more bombastic than it feels. It’s easier to simply say, “I can’t see.” But onward.

Like the everyday hallucinations, the early morning complex hallucinations are also not affected by my eyes being open or closed, though, if the sky is lightening, a sliver might show behind without changing any of it), and I can look around the scene to examine the vibrating tableau, as you might scan a computer screen if it were placed too close to your face.

As Sacks writes:

“I observed with Rosalie (as with many other patients) that while she was hallucinating, her eyes were open, and even though she could see nothing, her eyes moved here and there, as if looking at an actual scene. It was that which had first caught the nurses’ attention. Such looking or scanning does not occur with imagined scenes; most people, when visualizing or concentrating on their internal imagery, tend to close their eyes or else to have an abstracted gaze, looking at nothing in particular. … one does not hope to discover anything surprising or novel in one’s own imagery, whereas hallucinations may be full of surprises. They are often much more detailed than imagery, and ask to be inspected and studied.”

I find this distinction between mental imagery and hallucinations very helpful, as I have struggled to describe the difference to friends. I also have very intense mental imagery, often arising from internal reflection or prompted by outside stimuli–a novel or movie soundtrack can stimulate this imagery, but this does not present at all like the hallucinations. And yet both keep me tethered to the visible world, to my visual self.

I’m so stuck being a visual person that it is difficult for me to write anything very interesting without seeing it with my inner eye. Yet my inner eye has been so disconnected from actual sight for so long, it may be that I and others ought not to trust it. This is the struggle I find in my writing, which is why I write this now: I doubt my ability to tell you what I see. Have I had any success?

 

*This is essay 2 of #52essays2017, written with all four senses and remembered sight. Check out essay 1 “In the Beginning Were the Eye Doctors” here*

In the Beginning Were the Eye Doctors, essay 1 of #52essays2017

Before the base closed to make way for the National Park, Lucasfilm, and the Thoreau Center, my mother and I drove regularly through the Presidio to buy cheap groceries at the commissary or to the Letterman Army Medical Center for visits to the pediatricians and then many eye doctors. My dad was in the military, and as a dependent, I received benefits that extended beyond my parents’ divorce.

Letterman Army Medical Center photographed from above with the Golden Gate Bridge in the background. (Wikipedia)

I loved the drive that took us through the Arguello Gate, punching our car into an enchanted forest of Monterey pine, Monterey cypress, and the Tasmanian bluegum, a eucalyptus all the way from Australia. I did not know their names then, or that these seemingly primordial trees had been planted but a hundred years earlier. Inspired by the success of Golden Gate Park and Planted by the U.S. Army, these trees were meant to beautify the windswept brush lands that were an eyesore to the San Francisco Bay newcomers. It was no accident that the sudden woodlands reminded me of the enchanted New England greenery I looked longingly at in my mother’s pictorial atlas of America. The easterners who came to take over the Presidio after the Mexicans did not appreciate the sandy bluffs blowing into their windows or the scrubby barrenness sweeping down to the bay. So they made that landscape familiar by planting thousands of trees. And in those trees they nestled their Georgian Revival buildings for my mother to point to, with all the authority of having, for a few years, been the wife of an officer, “That’s the house of a general.” Or “those are bachelor quarters,” and I was duly impressed. One of those exotic brick buildings is now a boutique inn for tourists looking to enjoy amenities and hiking trails.

but this was the early ’80’s, at least ten years before the base was decommissioned, and long before I had need to know that the landscape was man-made. To my keen young eyes, it looked ancient, as if it were what San Francisco looked like under or behind all the people and buildings–prehistoric, darkly enchanting and full of dappled light. I could not know it was all fakery beyond those gates, all artifice and make believe.

 

In fourth grade, I suddenly couldn’t see the writing on the blackboard from the back of the class. I told my mother and she made an appointment at the optometrist. I was excited. Getting glasses seemed to me to be very grown up. We drove to one of the bungalows that lay in covered strips with wooden steps leading up to planked covered walkways, almost like an Old West town. The building was dark and creaky. I sat in the big chair and looked through the tiny eyeholes in the cartoonishly huge lens machine. I could not read the small print on the chart. Still, no matter how many times the lenses shifted and the doctor asked, “tell me if this one is better,” (click) “or this?” (click) “this one, or this one,” the line did not reveal itself to me. I was a child who wanted to please, so I tried very hard to see a difference. “Maybe, a little better.” I’d say, but there seemed to be no difference in any of the shifting lenses–no better anyway, only worse. Many of the lenses made my vision blurry. I did not know how to explain then that my vision had not been blurry before. I have never lived in a blurry world. My eye problems have nothing to do with focus. It was always a question of a lack of information, of a pixilated visionscape, of television fuzz, but I hadn’t the words then, or even much of all that was to come.

The optometrist prescribed some glasses, though he sheepishly explained that he could not get my vision down to 20/20. They did nothing to help me see the writing on the blackboard.

We went to another optometrist and then maybe an ophthalmologist. Again, there was the same clicking of lenses with its odd attendant sensations of shifting air currents so close to the eyeball, with no luck. “Maybe a little better.” Or “worse,” was all there was for me to say. After a long time, the eye doctor called my mother in and told us that he could not correct my vision.

Perhaps it was that doctor, or perhaps the next, possibly to allay my mother’s fears or perhaps to mitigate his own impotence, said, “Her eyes are growing too fast for her body.” Or maybe he said that my body was growing too fast for my eyes. That satisfied us for a little while.

Finally, we were referred from the bungalows to the main hospital–the building that has since been demolished to make room for the Letterman Digital Arts Center–to see the head of ophthalmology. This was when my mother began to worry that something queer and a little scary might be going on. Though My vision loss was not very impressive, maybe 20/40 in the worst eye, the head of ophthalmology could not offer a solution either. He sent me out of the room to talk to my mother, to berate her for bringing me to him.

In response to my mother’s worried summery–eye doctors offering wacky opinions and no answers–this brilliant man spoke lamely and with spite, “Maybe she can’t see because you’ve been taking her to so many eye doctors.”

This summit of ludicrous subterfuge, this apotheosis of smug defiance in the face of ignorance has oft been repeated by my mother and myself (who was loitering just outside the door, listening) as the climax in our sad little detective story: What was killing my sight?

My mother, never good at checking her emotions, allowed her voice to rise with tears and said, “then why can’t she read the writing on the blackboard?” She would not accept another answerless dismissal. To his credit, he did not dig in, but relented, perhaps embarrassed deeply, though on the surface the coolness remained. He called me back into the room and took another look into my eyes, with his headlamp and magnifying monocle, and saw…something. I can only imagine that it was a blip on the landscape of my retinas, a suggestion of that dystrophy that would grow into eventual blindness, or it may be that he saw nothing, but suspected something, something remembered from medical school or read about in an ophthalmology journal. Perhaps it was a eureka moment that sparked the intelligence of this head of ophthalmology–an intelligence that had been momentarily dimmed by ignorance. Maybe it was then that he remembered a degenerative eye disease called retinitis pigmentosa (RP), or maybe it was later, but, in any case, the diagnosis would be forthcoming, and one which I would use for decades.

As it turned out, my eye disease did not present like RP–I lost my central vision first whereas most people with retinitis pigmentosa lose peripheral vision first, so that as it progresses, they experience an ever more restricted tunnel vision. My disease progressed from the center outward, albeit jaggedly, leaving pockets of living cells.

Thirty some odd years later, I’ve learn that my cone-rod dystrophy is caused by a gene mutation that remains unidentified. In a world of rare eye diseases, I have a really rare one. As I write, my blood is going its second round of genetic testing, and it may be that I have a mutation all my own.

Back then, a diagnosis of retinitis pigmentosa was at least a name, a thing I could tell people, and it was rare enough and unique. I was strangely proud, so that when at the end of that first year, I was sent across the road to the Letterman Army Institute of Research (LAIR) for observation and experiment, I was excited. For three days they ran me through a battery of tests–from organizing little disks of gradient colors to a primitive electroretinography (ERG), putting me into a dark room to measure the electronic firings of the photoreceptor cells in my retina. The ERG is standard procedure at retinal specialists now, but they were just figuring it out back then.

In my most recent visit to the ophthalmologist, after dilation and numbing drops a technician laid thin wires along each of my bottom eyelids and taped the ends to my cheeks and forehead to keep them in place. The thin wires were then connected to thicker ones that in turn made their way into a computer. But that first ERG, a lab rat was I, laying in the dark for many hours with my eyelids held open by grotesque contact lenses from which the wires sprung. That had been perhaps the scariest, but also the most important test I underwent at LAIR, one that likely contributed to the current state of the art technology that even suggests the possibility of a near-future cure.

I subsequently did a presentation on the experience. By that time, I’d moved from fourth grade to fifth grade, and in my private girl school, that meant a change in uniform, from green plaid bib dresses to sailor-style middies and pleated navy skirts.

My presentation on retinitis pigmentosa and my battery of testing at LAIR, with its photographs and little moments of humor, like when I described looking into a contraption to click a button when I saw (and did not see) a tiny red light move into and out of my visual field, as resembling nothing so much as staring for hours into an illuminated toilet bowl, got a laugh from my classmates. I also got some pointed questions from my teacher. Perhaps she, along with my other teachers, was concerned, but they did not let on. It was a small school and I was a scholarship child in a sea of very rich girls, so there was perhaps a lot of feeling sorry for me going on. Or perhaps not. Maybe it is just my grown up self who feels sorry for that little girl who tried so hard to make light of something scary and totally out of her control. Out of even the control of her mother and teacher’s and eye doctors too.

Image of Godin's retina in 1983

The progress of my eye disease has been the degeneration of my sight–progress and degeneration have thus been strangely confused in my mind since I was a kid. And today, it is not clear to me whether this long eye progression of sight to blindness, the slowest of calamities, akin to aging in its relentless and somewhat boring degeneration, has diminished or enhanced my life experiences. But human existence being what it is–complicated and fleeting–I imagine the answer must be both.

 

*This is the first of #52essays2017 written with all four senses and remembered sight. Read more about the project and the woman behind it HERE*

THE HAND OF THE WORLD: Helen Keller on Social Blindness

[From Out of the Dark: Essays, Letters, and Addresses on Physical and Social Vision (1913). This text has been lightly edited for apparent scanning errors and hyperlinked by me]

Out of the Dark by Helen Keller 1st edition gold coverAs I write this, I am sitting in a pleasant house, in a sunny, wide-windowed study filled with plants and flowers. Here I sit, warmly clad, secure against want, sure that what my welfare requires the world will give. Through these generous surroundings I feel the touch of a hand, invisible but potent, all-sustaining — the hand that wove my garments, the hand that stretched the roof over my head, the hand which printed the pages that I read.

What is that hand which shelters me? In vain the winds buffet my house and hurl the biting cold against my windows: that hand still keeps me warm. What is it that I may lean upon it at every step I take in the dark, and it fails me not? I give wondering praise to the beneficent hand that ministers to my joy and comfort, that toils for the daily bread of all. I would gratefully acknowledge my debt to its capability and kindness. I pray that some hearts may heed my words about the hand of the world, that they may believe in the coming of that commonwealth in which the gyves shall be struck from the wrist of Labour, and the pulse of Production shall be strong with joy.

All our earthly well-being hangs upon the living hand of the world. Society is founded upon it. Its lifebeats throb in our institutions. Every industry, every process is wrought by a hand, or by a superhand — a machine whose mighty arm and cunning fingers the human hand invents and wields. The hand embodies its skill, projects, and multiplies itself in wondrous tools, and with them it spins and weaves, ploughs and reaps, converts clay into walls, and roofs our habitations with trees of the forest. It compels Titans of steel to heave incredible burdens, and commands the service of nimble lackeys which neither groan nor become exhausted. Communication between mind and mind, between writer and reader, is made possible by marvelous extensions of the might of the hand, by elaborate reduplications of the many-motioned fingers. I have touched one of those great printing-presses in which a river of paper flows over the types, is cut, folded, and piled with swift precision. Between my thoughts and the words which you read on this page a thousand hands have intervened; a hundred shafts of steel have rocked to and fro, to and fro, in industrious rhythm.

The hand of the world! Think how it sends forth the waters where it will, to form canals between the seas, and binds the same seas with thought incorporate in arms of stone! What is the telegraph cable but the quick hand of the world extended between the nations, now menacing, now clasped in brotherhood? What are our ships and railways but the feet of man made swift and strong by his hands? The hand captures the winds, the sun, and the lightnings, and despatches them upon errands of commerce. Before its irresistible blows mountains are beaten small as dust. Huge derricks—prehensile power magnified in digits of steel — rear factories and palaces, lay stone upon stone in our stately monuments, and raise cathedral spires.

On the hand of the world are visible the records of biology, of history, of all human existence since the day of the “first thumb that caught the trick of thought.” Every hand wears a birth-seal. By the lines of the thumb each of us can be identified from infancy to age. So by the marks on the hand of the world its unmistakable personality is revealed. Through suffering and prosperity, through periods of retrograde -and progress, the hand keeps its identity. Even now, when the ceaseless ply of the world-shuttles is so clamorous and confused, when the labour of the individual is lost in the complexities of production, the old human hand, the symbol of the race, may still be discerned, blurred by the speed of its movements, but master and guide of all that whirring loom.

Study the hand, and you shall find in it the true picture of man, the story of human growth, the measure of the world’s greatness and weakness. Its courage, its steadfastness, its pertinacity make all the welfare of the human race. Upon the trustworthiness of strong, toil-hardened hands rests the life of each and all. Every day thousands of people enter the railway train and trust their lives to the hand that grasps the throttle of the locomotive. Such responsibility kindles the imagination! But more profound is the thought that the destiny and the daily life of mankind depend upon countless obscure hands that are never lifted up in any dramatic gesture to remind the world of their existence. In Sartor Resartus Carlyle expresses our obligation to the uncelebrated hands of the worker:

 

 

“Venerable to me is the hard Hand; crooked and coarse; wherein notwithstanding lies a cunning virtue, indefeasibly royal, as of the Sceptre of this Planet. . . . Hardly entreated Brother! For us was thy back so bent, for us were thy straight limbs and fingers so deformed: thou wert our Conscript, on whom the lot fell, and fighting our battles wert so marred. For in thee, too, lay a god-created Form, but it was not to be unfolded; encrusted must it stand with the thick adhesions and defacements of Labour: and thy body, like thy soul, was not to know freedom.”

But wherefore these deformities and defacements? Wherefore this bondage that cramps the soul? A million tool-hands are at our service, tireless and efficient, having neither heart nor nerve. Why do they not lift the burden from those bowed shoulders? Can it be that man is captive to his own machine, manacled to his own handiwork, like the convict chained to the prison-wall that he himself has built? Instruments multiply, they incorporate more and more of the intelligence of men; they not only perform coarse drudgery, but also imitate accurately many of the hand’s most difficult dexterities. Still the God-created Form is bowed. Innumerable souls are still denied their freedom. Still the fighter of our battles is maimed and defrauded.

Once I rejoiced when I heard of a new invention for the comfort of man. Taught by religion and a gentle home life, nourished with good books, I could not but believe that all men had access to the benefits of inventive genius. When I heard that locomotives had doubled in size and speed, I thought: “The food of the wheat-fields will come cheaper to the poor of the cities now/’ and I was glad. But flour costs more to-day than when I read of those great new engines. Why do not improved methods of milling and transportation improve the dinner of the poor? I supposed that in our civilization all advances benefited every man. I imagined that every worthy endeavour brought a sure reward. I had felt in my life the touch only of hands that uphold the weak, hands that are all eye and ear, charged with helpful intelligence. I believed that people made their own conditions, and that, if the conditions were not always of the best, they were at least tolerable, just as my infirmity was tolerable.

As the years went by and I read more widely, I learned that the miseries and failures of the poor are not always due to their own faults, that multitudes of men, for some strange reason, fail to share in the much-talked-of progress of the world. I shall never forget the pain and amazement which I felt when I came to examine the statistics of blindness, its causes, and its connection with other calamities that befall thousands of my fellow-men. I learned how workmen are stricken by the machine hands that they are operating. It became clear to me that the labour-saving machine does not save the labourer. It saves expense and makes profits for the owner of the machine. The worker has no share in the increased production due to improved methods; and, what is worse, as the eagle was killed by the arrow winged with his own feather, so the hand of the world is wounded by its own skill. The multipotent machine displaces the very hand that created it. The productivity of the machine seems to be valued above the human hand; for the machine is often left without proper safeguards, and so hurts the very life it was intended to serve.

Step by step my investigation of blindness led me into the industrial world. And what a world it is! How different from the world of my beliefs! I must face unflinchingly a world of facts — a world of misery and degradation, of blindness, crookedness, and sin, a world struggling against the elements, against the unknown, against itself. How reconcile this world of fact with the bright world of my imagining? My darkness had been filled with the light of intelligence, and, behold, the outer day-lit world was stumbling and groping in social blindness! At first I was most unhappy; but deeper study restored my confidence. By learning the sufferings and burdens of men, I became aware as never before of the life-power that has survived the forces of darkness, the power which, though never completely victorious, is continuously conquering. The very fact that we are still here carrying on the contest against the hosts of annihilation proves that on the whole the battle has gone for humanity. The world’s great heart has proved equal to the prodigious undertaking which God set it. Rebuffed, but always persevering; self-reproached, but ever regaining faith; undaunted, tenacious, the heart of man labours toward immeasurably distant goals. Discouraged not by difficulties without, or the anguish of ages within, the heart listens to a secret voice that whispers: “Be not dismayed; in the future lies the Promised Land. ”

When I think of all the wonders that the hand of man has wrought, I rejoice, and am lifted up. It seems the image and agent of the Hand that upholds us all. We are its creatures, its triumphs, remade by it in the ages since the birth of the race. Nothing on earth is so thrilling, so terrifying, as the power of our own hands to keep us or mar us. All that man does is the hand alive, the hand manifest, creating and destroying, itself the instrument of order and demolition. It moves a stone, and the universe undergoes a readjustment. It breaks a clod, and new beauty bursts forth in fruits and flowers, and the sea of fertility flows over the desert.

With our hands we raise each other to the heights of knowledge and achievement, and with the same hands we plunge each other into the pit. I have stood beside a gun which they told me could in a few minutes destroy a town and all the people in it. When. I learned how much the gun cost, I thought: “Enough labour is wasted on that gun to build a town full of clean streets and wholesome dwellings !” Misguided hands that destroy their own handiwork and deface the image of God! Wonderful hands that wound and can bind up, that make sore and can heal, suffering all injuries, yet triumphant in measureless enterprise! What on earth is like unto the hands in their possibilities of good and evil? So much creative power has God deputed to us that we can fashion human beings round about with strong sinews and noble limbs, or we can shrivel them up, grind living hearts and living hands in the mills of penury. This power gives me confidence. But because it is often misdirected, my confidence is mingled with discontent.

“Why is it,” I asked, and turned to the literature of our day for an answer, “why is it that so many workers live in unspeakable misery?” With their hands they have builded great cities and they cannot be sure of a roof over their heads. With their hands they have opened mines and dragged forth with the strength of their bodies the buried sunshine of dead forests, and they are cold. They have gone down into the bowels of the earth for diamonds and gold, and they haggle for a loaf of bread. With their hands they erect temple and palace, and their habitation is a crowded room in a tenement. They plough and sow and fill our hands with flowers while their own hands are full of husks.

In our mills, factories, and mines, human hands are herded together to dig, to spin, and to feed the machines that they have made, and the product of the machine is not theirs. Day after day naked hands, without safeguard, without respite, must guide the machines under dangerous and unclean conditions. Day after day they must keep firm hold of the little that they grasp of life, until they are hardened, brutalized. Still the portent of idle hands grows apace, and the hand-to-hand grapple waxes more fierce. O pitiful blindness! O folly that men should allow such contradictions — contradictions that violate not only the higher justice but the plainest common sense. How do the hands that have achieved the Mauretania become so impotent that they cannot save themselves from drowning? How do our hands that have stretched railways and telegraphs round the world become so shortened that they cannot redeem themselves?

Why is it that willing hands are denied the prerogative of Labour, that the hand of man is against man? At the bidding of a single hand thousands rush to produce, or hang idle. Amazing that hands which produce nothing should be exalted and jewelled with authority! In yonder town the textile mills are idle, and the people want shoes. Fifty miles away, in another town, the shoe factories are silent, and the people want clothes. Between these two arrested forces of production is that record of profits and losses called the Market. The buyers of clothes and shoes in the market are the workers themselves; but they cannot buy what their hands have made. Is it not unjust that the hands of the world are not subject to the will of the workers, but are driven by the blind force of Necessity to obey the will of the few? And who are these few? They are themselves the slaves of the Market and the victims of Necessity.

Driven by the very maladjustments that wound it, and enabled by its proved capacity for readjustment and harmony, society must move onward to a state in which every hand shall work and reap the fruits of its own endeavour, no less, no more. This is the third world which I have discovered. From a world of dreams I was plunged into a world of fact, and thence I have emerged into a society which is still a dream, but rooted in the actual. The commonwealth of the future is growing surely out of the state in which we now live. There will be strife, but no aimless, self-defeating strife. There will be competition, but no soul-destroying, hand-crippling competition. There will be only honest emulation in cooperative effort. There will be example to instruct, companionship to cheer, and to lighten burdens. Each hand will do its part in the provision of food, clothing, shelter, and the other great needs of man, so that if poverty comes all will bear it alike, and if prosperity shines all will rejoice in its warmth.

There have been such periods in the history of man. Human nature has proved itself capable of equal cooperation. But the early communist societies of which history tells us were primitive in their methods of production — half civilized, as we say who dare call our present modes of life civilization! The coming age will be complex, and will relinquish nothing useful in the methods which it has learned in long struggles through tyrannies and fierce rivalries of possession. To the hand of the world belongs the best, the noblest, the most stupendous task, the subjection of all the forces of nature to the mind of man, the subjection of physical strength to the might of the spirit. We are still far from this loftiest of triumphs of the hand. Its forces are still to be disciplined and organized. The limbs of the world must first be restored. In order that no limb may suffer, and that none may keep the others in bondage, the will of the many must become self-conscious and intelligently united. Then the hand — the living power of man, the hewer of the world — will be laid with undisputed sway upon the machine with which it has so long been confounded. There will be abundance for all, and no hands will cry out any more against the arm of the mighty. The hand of the world will then have achieved what it now obscurely symbolizes — the uplifting and regeneration of the race, all that is highest, all that is creative, in man.

A Flame’s Progress, Greek Easter 1981

We arrived late as always, so that there was no place to sit, though there’s not a whole lot of sitting in Greek Orthodox churches. Standing in our coats, clutching our unlit candles, we crowded in with the others who, like us, came to church but once or twice a year. I was between my mom and my Thea Yvonne and on the other side of her was my Uncle Art–there’s a strange convention in our family to call our Aunts by the Greek thea but our uncles by the American uncle. I don’t know why, but it pretty much sums up the willy-nilly Greek/American distribution of traditions on my mother’s side of the family. And if there ever was a perfect blend of these two strains of holidaymaking, it was for me Easter, when I got the best of both worlds.

 

I waited impatiently for the music that heralded the candle lighting, and when it happened, the church erupted in song. “Christos Anesti!” (“Christ has risen!”) was sung over and over again. Wikipedia tells me that this is called the Paschal troparion, originally written in Koine (common) Greek, the original language of the New Testament, but translated into countless languages and sung in Eastern Orthodox Churches all over the world, as witnessed by this YouTube video.

 

The gold ceiling caught fire as the candlelight passed from the priest to the ancient and impossibly shriveled old ladies who sat at the front of the church swaddled in black, like ornery newborns. I could not see them, but knew they were there because they were always there, coming early for the good seats and staying late against their doom.

 

The stone church glowed like an oven when the first candle of my relatives was lit. My mother nudged me to hold my candle with its protective cup to catch dripping wax, straight. This I did with great anticipation, mouthing the words of Greek I wished fervently I knew, a desire, which would be forgotten by morning when American Easter baskets of chocolate bunnies and sugar flowers would drown out the yearning for the culture in which I feebly swam. But for now, it was the dark ritual that sparked passion in my young heart, and it was coming to its wonderful climax.

 

Being in the back meant that although we were among the last to arrive and receive the flame, we were the first to leave. Once all candles were lit, and a final round of Christos Anesti sung inside the church, the doors were flung open and we took our fire and our song and our ancient ritual with its pagan roots outside.

 

We circled the Ascension Cathedral thrice and, so embedded is the celebration of light in the human imagination, that even my profoundly secular heart (which loves all dark and mysterious things without attributing the magic of life to any great being) find this ritual memory moving to the point of tears. Who can deny the beauty inspired by belief? There is horror inspired by belief also, but this essay is a celebration of the beautiful.

 

Atop the Oakland hill, the streetlights twinkled below. Our flames’ progress was not the only light in the darkness, as our forefathers may easily have imagined on some Hellenic hill in centuries past, but still, as my eyes were just beginning to show signs of the degenerative disease that would eventually mar distinctions between day and night, I easily imagined ours to be the only light in that dark bosom of midnight. What ten year old could fail to appreciate the delicious transgression of wakefulness? Or to relish the solemn joy that was the reenactment of the ultimate Christian paradox: in order to live, one must die.

 

Perhaps some of the congregation reentered the church to finish out the service, and there is some part of me now that yearns to return with them into that quiet place, filled with the recent echoes and rustles of some hundred souls. But that was not then my yearning. In the back seat of my uncle’s Cadillac, I stared at my candle and chattered about how beautiful it all was while already my mind was turning to dinner with its own set of light-hearted rituals.

 

The table spread out like an Easter parade with silver candelabras waiting to embrace our still-lit candles set next to baskets with glittery grass and shining colored eggs. We did not then do the red eggs as is traditional in Eastern Orthodoxy, though, in recent years, my mother has placed the incongruous blood-red eggs (with all their gruesome metaphorics) into American Easter baskets. But when I was little, she wanted me to enjoy the sweetness of the American dyes as if to preserve my innocence, although, even then, the veil had begun to fray.

A mysterious dystrophy was happening in my retinas and I’d already been to one or two ophthalmologists that year. It was precisely those doctors who, confronting their own ignorance and inability to explain why their lenses could not correct my vision, opened a great and never-to-be-closed chasm in my child’s psyche: I was made suddenly and irrevocably aware of the limits of human understanding. It was in 1981 that I learned how the smell of ignorance permeates all–never mind the bright white robes of clean and apparent knowledge.

 

 

It is also in my memory that at that year’s Easter dinner I had my first taste of watered wine and felt very grown up. I was the youngest and only girl at the table. The only other kids there were two of Thea Yvonne’s three sons, who were quite a bit older than I. Thea Yvonne had yearned for a girl child that she might pamper with all the sweet things her own childhood in the Greek mountain town before and during World War II had not offered her and her sisters, and I was happy to step in. Her beautiful house offered me eyefuls of objects to gawk at and love, as well as a storehouse of visual memories to treasure, now that I can no longer see:

 

A collection of Madame Alexander dolls dressed in costumes from around the world, and Art Deco prints with elongated women in peacock dresses whose skirts are attached to gloved hands. Pristine and plush white rugs led out to a dark pool–one made of stone that puts aqua fakery to shame. And, beyond the pool, Thea Yvonne’s rose garden taught me to love outrageous blooms with august names like Queen Elizabeth and Sterling Silver that resembled not at all the upright uniformity found in shops. One blossom presents itself to my mind’s eye in a cinematic close-up: a pale rose with a dark center, its ivory petals rimmed with wine.

 

I am suddenly tempted to Google “Easter egg fight,” to know if it is American or Greek, though I suspect the latter for two reasons: First, Greeks tend to be a competitive lot, and second, because the tabletop tournament requires some Greek be spoken. But I will not. I prefer to remain blissfully ignorant and pretend my family invented the game.

 

I believe my mother conducted the Easter egg fight that year, but that could be because she was my first combatant, sitting next to me as she was. “Pick your eggs!” Everyone reached into the baskets and chose, very carefully, the egg they believed would beat the rest. I chose a purple one. It felt strong and solid as a stone.

“Ok, pointy end to pointy end,” said my mother. “You want to hit first?” “Uh-huh,” I said and poised my egg above hers.

“Christos anesti,” I said and my mother responded, “Alithos anesti.”

“Oh!” we both cried. I was victorious.

“Turn your egg around.” This time she hit me, but again I prevailed.

 

I took my winner egg to my cousin, whom I may have had a little crush on, as I did most boys since I didn’t have many of the male persuasion in my life after my parents divorced and I started at an all-girl school. But I beat him too, on this my favorite and most special Easter ever. And on it went “Christos anesti–Christ has risen!” Alithos anesti–Indeed he has!” BONK Smash CRACK I went around the table to the eggs that remained uncrushed and crushed them all!

I was so proud. My champion was placed back into the basket with great solemnity.

 

Then I selected another egg to be sacrificed to my dinner–sliced and generously sprinkled with salt and pepper and eaten on top of buttered pita bread–what we called the sweet Easter bread that required much love and warming blankets to encourage its multiple risings. I was not much of a meat eater back then, so I can’t tell you about the leg of lamb, but my current, wiser self knows it was delicious and regrets her youthful folly!

 

Eventually my eyes grew droopy. There was no more postponing the inevitable. I was tucked into bed. First to sleep, first to rise, I woke up to a new house–one transformed into an Easter Bunny’s playground, and enjoyed an Easter egg hunt made for one, traipsing around the house finding little nests of candies with clues to the next treasure written on cards decorated with baby chicks.

 

Because my eye disease stole my central vision first, it would not be long before I could not read such cards, but on Greek Easter 1981, the year I was ten and balancing on the cusp between seeing the world through a bright child’s lens and darkly through that of an adult, I was filled with excitement at finding what had been created just for me. I ran upstairs to show my mother each piece of candy and trinket I found, as if she had never seen it before, as if we’d never either of us seen anything like it before. Or would ever again.

 

*First published at Quail Bell Magazine*