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.

“LEE GOODIN, SAN FRANCISCO” Dad’s Letters to the Editor, 2007

On the first anniversary of my father’s death, I’m grateful to my stepmother for sending me three of his letters to the editor, clipped from the San Francisco Chronicle. One of them—from August 19 , was published eleven years to the day before his death. It’s humor apparently hit the mark, as the editors used his words “erector set” to title the section. My dad was not alone in abhorring the proposed building sketches, he just said it best! This letter and the others remind me how much he changed in his last years, and how much he stayed the same.

Once, during one of our “liquid lunches”—sitting for hours drinking (and eating) in the window booth of Fior d’Italia—which we indulged in every time I visited San Francisco, he mentioned that he had an idea to put all his letters to the editor together and write a book around them. I encouraged him, but did nothing to forward the ambition. A couple years later, when he was feeling much more downcast, much more sedentary, and house-bound (except for Fior downstairs and the doctors), I asked him about the idea, and he shrugged it off as something that was no longer interesting to him, or no longer possible. I don’t know that I’ll ever be able to fulfill that particular book idea, but at least I can share his words here.

In the three letters from 2007, his interests range from the homeless to the monstrous aesthetics of a planned skyscraper to expressing his fears about a radical conservative court—a painfully prescient thought.

In these concise bits of his politics, my dad’s witty and reasonable voice talks to me from his tumultuous watery grave in San Francisco Bay, reminding me that, although in his last years he took little pleasure in the arts or travel that he’d once loved so much, he never stopped thinking about politics at the local and national levels.

To be sure, since 2016 at least, things were going in a direction that once would have made his blood boil, but at the end just kept his mental state set to a slow burn. The upshot being that his impending death seemed less dire than it might have if Trump had not soiled the White House.

My dad had his opinions till the end, even if he lost some of his fighting spirit. As you can read in my personal obituary for him, or in this essay I wrote a few months before his death. In his last years, his body made war on him, and there was not a lot of energy left for politics. Even so, his interest could not be extinguished. There was at least enough curiosity to know how bad things were going to get him out of bed every morning—despite the considerable pain—and into his wheelchair. Then he’d belly up to the dining room table, where he’d spend hours grumbling and griping over the newspaper in his endearingly grumpy way.

LETTERS TO THE EDITOR – MONDAY, JULY 9, 2007

Battle of the activist courts

Editor – August Goddard’s comparison of a “conservative activist” court with a “liberal activist” court is a typical knee- jerk reaction by those who would have us return to some dark medieval fantasy world (Letters, “The Supremes and ‘a living Constitution, ” July 6).

The liberal court always moved our country in the direction of more civil rights more freedoms. A court unlike the Bush/Cheney-appointed court that will be chipping away at those hard-won rights and freedoms for the next 20-to-30 years. I hope Goddard enjoys living under a Constitution rewritten by the extreme religious right. I shudder at the thought.

LEE GOODIN
San Francisco

LETTERS TO THE EDITOR – Sunday, August 19, 2007

An Erector Set

Editor – Regarding the Transbay Terminal high-rise proposals: Unlike John King, The Chronicle’s urban design writer, I guess I don’t understand what the neighborhood needs.”

His selection, the Rogers design, looks like the contractors forgot to remove the construction elevators-giving it an “erector set” appearance, and the thing on top looks like an apparatus in Dr. Frankenstein’s laboratory.

The other two designs look like screwdrivers and would give the city a San Diego-look—the locals call their downtown “the toolbox” because the Rogers Stirk Harbour buildings all look like chisels and screw- drivers standing point up (except one that looks like an electric shaver). At more than 1,200 feet in height, any of the proposals would become a tempting “terrorist target.”

LEE GOODIN
San Francisco

LETTERS TO THE EDITOR – Tuesday, December 25, 2007

Advocates aren’t helping

Editor – Regarding “If you want to help the homeless, just say yes,” by C.W. Nevius (Dec. 23): Once again, the Homeless Coalition and other so-called homeless advocates prove themselves to be part of the problem.

Are they professional “do-gooders” whose own means of support relies on maintaining a homeless population? Or are they amateur “feel-gooders” who are clueless as what needs to be done other than handing out blankets and passing out turkey sandwiches? Homeless and poverty have become buzzwords to cover a variety of individual situations. A family temporarily homeless because dad was “downsized” or they had catastrophic medical bills is different than the individual described in the column. He was homeless in front of a liquor store that cashed his check (for a price) and then gave him the remainder in bottles of cheap booze. In the first instance, normal social services can help the family to recover; there is an assumption that they are willing and able to be helped. In the latter case, the chronic alcoholic (who had an income) needed some “tough love”: detox, placement in one of the mayor’s full-service hotels and on-going rehab. Instead, he ended up dead. Nice going, homeless advocates.

Care Not Cash needs a big dose of tough love to get the chronic homeless off the streets and into appropriate settings to deal with their myriad problems. If it takes changes to the law in order to move them off the streets into appropriate environments, then let’s get busy on legislation that will do just that.

LEE GOODIN
San Francisco

1984: Late to the Party Again, Essay 6 of #52essays2017

Menacing cover of a Czech copy of 1984In the year 1984, I was in sixth grade, a scholarship child in a private girl school. The eighth graders were reading George Orwell’s 1984 and had plastered the walls with images of our headmistress that read, “Big Sister is Watching YOU.” We didn’t know what it meant, but we understood that it was witty and smart and that that group of girls was particularly beloved by the teachers, headmistress and principle and could get away with such things. Our class, dominated by girls whose anger and sadness ruled their intelligence, was not, I understand now, so beloved.

Though I’d started having trouble seeing the blackboard back in fourth grade, it was not until sixth that I began having trouble reading print. One time in history class, which I loved, I was taking a pop quiz and stared at the purple ditto ink, astonished and afraid because I couldn’t make out a single word. I raised my hand and told Mrs. Clark in a nervous whisper that I wasn’t able to read it. She turned the paper over and there was the quiz! We laughed. I told that story many times in those years when my eye disease seemed merely an odd anomaly, a predicament that presented problems easily solved in a class of 40 with smart caring teachers.

It was also in sixth grade that I was presenting a book report with my friend (with whom I would in another year or two vandalize the school one night with shaving cream), reading notes we’d written with pale blue ink that I suddenly could not read, and I stumbled over my part of the presentation. She laughed and snatched the notes away. It was not mean-spirited. She simply took control of what I’d not been able to do. I stood, as I would so often stand through my teens and twenties, very still, mortified. It was my great shame not to be able to read anymore.

In earlier grades, I’d been a great reader, a cocky little reader who’d gleefully raise her hand to read aloud and took pride in reading ahead while my classmates labored. I’d show off the adult books I was reading, pilfered from my mother’s bookcase, Agatha Christie mysteries, Gone with the Wind.

Some of my favorite memories of childhood are of reading in special places. I remember finishing Little Women while sitting in the branches of a tree in the huge shared backyard of my grandmother’s apartment complex. I remember reading the end of Jane Eyre, tears rolling down my face in the window seat of the library on 9th Avenue, where I’d wait for my mother to get off work at the clothing boutique around the corner on Clement Street. And I remember reading Poe stories on the bus ride out to the SF Zoo to volunteer on Saturday mornings.

By the time I was in eighth Grade, and it was our turn to read 1984, reading was no longer a pleasure but a chore. I never finished it. I bluffed my way through. If I had good lighting, was not tired, and did not mind how slow it went, I could still read for another year or two, but mostly, the act of scanning words with eyeballs had a hole in it. Where the words should be, there was nothing.

I did not get into the fancy high schools of my peers. I went instead to my neighborhood public school, where my mother had gone before me. I received no help and my rebel self wanted none. I had my smarts and the classes were not challenging. They sucked and I hated it all except for ninth grade English Honors.

Mr. Davis squeezed a few more reads out of me–I remember being particularly engrossed by Green Mansions. He had us watch Cocteau’s La Belle et la Bete, which made a lasting visual impression on me though I could not read the subtitles. He also kept alive for a little while longer the pleasure I took in writing–I’d thankfully taught myself to touch-type the year before on my mom’s manual typewriter. For his class I typed up the last story I would write for a long time. It was about two girls who’d run away. They sat smoking in the McDonald’s on Powell Street. Only one had a pang of regret for the childhood lost and the certainty she’d never go back. I believe that was my last A until college.

Some paltry years of learning flew by, with little school attendance and much teenage debauchery. I cut classes and smoked cigarettes in a café down the street with my best friend–the best friend I still have and the only good take away from that school other than Honors English. I still fancied myself intelligent, a writer. I think I even sometimes dreamed of getting a doctorate someday.

But words and faces were slipping from me: wandering the used bookshop with my friends meant faking it. Looking in used record shops meant looking for recognizable covers with large print. Watching TV meant pretending to see what was going on if it were more than a few feet from me. I took it all in as shame and anger and nursed it with booze and candy.

Doctored newspaper clipping of Tony Randall handing RFB&D Achievement Award to GodinWhen I finally dropped out of high school, it was in order to move on to City College. High School was not working. Finally I got help. Finally I learned about an organization called Recording for the Blind and Dyslexic from whom I would receive an achievement award upon my college graduation some years down the line, handed to me in a fancy ceremony in NYC by Tony Randall. Now RFB&D is called Learning Ally and students don’t have to wait for their digital downloads–blind kids are so lucky these days!–but back in the pre-digital stone age, they sent clunky blue boxes of recorded books on tape cassettes via snail mail.

The first book I remember listening to on the plastic companion cassette player was 1984, the aborted read from years earlier. I was completely hooked and listened to it over the course of a night. The best part about reading by listening is that you do not have to worry about your eyes getting tired.

But those little blue boxes were limited. It takes a long time to have people read books onto tape and to process them. It took time for them to arrive in the mail, a delay of one to three weeks. So that sometimes, by the time I received them, I’d forgotten what prompted me to order them. I could not borrow books from friends and I could not often even get ahold of those they were reading, but at least I could read some. Eating chips or smoking while listening to novels was my great escape.

It was wonderful to have access to books again, but there was shame in those blue boxes, shame in listening to books with my ears instead of reading with my eyes. I hid them away from my friends as much as possible.

Although I still listen to books, having them come to me in a digital file that I listen to in a ubiquitous and perfectly quotidian iPhone has changed everything. The shame is gone, or nearly so. There are so many books available to me through blind organizations such as Bookshare, or through universally available sources such as Project Gutenberg and Kindle, that I can get ahold of most everything I want to read quickly and easily. Others I can scan. In fact, I have so many books on my phone that it has, I’m afraid, made me a little more deficient in attention than I once was, but I’ll take the downside with the many upsides of being able to be current with my intellectual interests. And also able to keep up with what’s going on in the world’s intellectual meanderings, such as they are.

This time, when the call to read 1984 shot around the internet, I was able to download and start reading it immediately. Naturally I’m horrified and darkly amused by the ludicrous behavior of this president and his lackeys with their “alternative facts,” but in some ways I’m more concerned about the hypocrisy of so many of my peers who seem already to have forgotten the jokes and apathy that led up to the election. It is trendy to bash this sad sack in the White House but unthinkable to question one’s own culpability.

Honestly, I’ve shied away from the news since the new presidency. An avid listener to NPR since the Gulf War in 1990, last fall found me angry at my radio for the first time for taking Trump seriously on the one hand, and as just an impossible joke on the other. That so many people I knew felt mostly apathy before the election and have turned fanatical since also feels like a betrayal on the order of 1984 itself. “‘The only evidence is inside my own mind, and I don’t know with any certainty that any other human being shares my memories.'”

The connections between 1984 and the current state of affairs in politics that put the 68-year-old novel at the top of Amazon’s Bestseller list is obvious, but it ought to be recognized as complicated, as our hero Winston Smith is complicated. If Trump being in the white house suggests the regime of Big Brother, I think we ought to allow for the possibility that we are like the very flawed Winston who can in one breath cling to his humanity as the only weapon against the Party:

“‘If you can feel that staying human is worthwhile, even when it can’t have any result whatever, you’ve beaten them.'”

And in the next throw away that humanity in the thoughtless acceptance of rebelling:

“‘You are prepared to cheat, to forge, to blackmail, to corrupt the minds of children, to distribute habit-forming drugs, to encourage prostitution, to disseminate venereal diseases–to do anything which is likely to cause demoralisation and weaken the power of the Party?’

‘Yes.’

‘If, for example, it would somehow serve our interests to throw sulphuric acid in a child’s face–are you prepared to do that?’

‘Yes.'”

These words will come back to haunt Winston in the Ministry of Love even before the final betrayal, suggesting an irony that in the very act of rebelling he steps that much closer to those he is rebelling against, towards their destructive utilitarian philosophy that deems the most heinous acts worthy if they further the cause. To lose one’s humanity in the face of fear and anger is too easy and more dangerous if left unrecognized.

 

*This is essay 6 of #52essays2017, written with all four senses and remembered sight. Read my previous essay Ylang-ylang: Calming the Panic of Love & Memory here*

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*

Helen Keller Quotes Explosion

Star of Happiness promotional shot. Godin kneeling in silver and black with loop pedals. Cathryn Lynne Photographer.You kneel on the floor with two loop pedals in front of you. Above you hangs a projected red curtain and an empty spotlight. you say, “Oh, fuck it,” and hit one of the pedals, which causes The Star of Happiness theme song instrumental interlude to play.

“I was born with a degenerative eye disease called…” you hit the loop pedal twice quickly in order to catch “cone-rod dystrophy.”

“This means that, since I was ten years old, I’ve been going very slowly blind. I’ve occupied many positions on the sight/blindness continuum. I’m more blind than sighted now, but it’s not always been like this. Perhaps for you, going blind is the scariest, or at least one of the scariest, things imaginable. For me, thinking about losing another sense, especially hearing, is really scary.

“When I started reading books by and about Helen Keller, I suddenly developed a ringing in my ear. It was likely psychosomatic. (Wouldn’t have been the first psycho symptom I’ve exhibited.) Around that time, I had a dream: I was Helen, in the last years of her life when she was confined to bed by old age illness. We were insensible to sights and sounds As she had almost always been, but now, unable to move, we were deprived of the incessant, impulsive force that had launched her, a crazy deaf blind caterpillar, feelers electrified and electrifying, meteorically into a world that could not get enough of her, and of which she also could not get enough.”

Behind you on the screen, images of Helen from earlier in the show slowly spin around the projected spotlight, then break away.

“Now, after living nearly ninety years of a life that included such varied occupations as…” you pick up “political activist” and “vaudeville performer” into the loop and continue, “and ” after World War II, after America dropped bombs etc., she became an officially sanctioned, unofficial…” you catch up the following into the loop, “ambassador of American peace and good will,” and continue. “Two million Japanese welcomed her when she visited decimated Nagasaki and Hiroshima. They loved her that much!

“but my dream was set in a time past all that, so that I experienced what it would be like to have a sensory existence that extended no farther than the cocoon like bedding in which we were wrapped. Excepting slight tremors and vibrations through the floor, And the occasional touch of an attending hand…” you hit the loop pedal, “THERE WAS NOTHING.”

“However, in the double visioned way dreams sometimes unfold, I was trapped in her immobility with her and seeing her inert body as if it were an out of body experience, without much height or distance. The perspective was split: both inside feeling out and outside looking in.

“The in-body perspective was that of the cornered small animal trembling with the desire to escape, that of the suddenly quadriplegic wishing impotently to die, that of the tongueless victim left alone to tell her tale.

“While the out of body perspective was that of the achingly detached observer, that of the nonsensical buzzing fly, that of the sole audience at a wake. From here, the bed on which we lie, appears, in my mind’s eye, to be a tabula rasa, our body a lumpy virgin landscape.

“But this is my nightmare, not Helen’s. Helen believed that there was an eternal, heavenly, fully sensing body waiting for her to step into after death.”

You hit the pedal and pick up what Helen says, “It gives me a deep, comforting sense that things seen are temporal and things unseen are eternal.”

You say, “Now she is the star of happiness to all struggling humanity.”

Helen says, “Alone we can do so little, together we can do so much.”

You say, “If Helen Keller fell down in the woods would she make a sound?”

Helen says, “I was strong, stubborn, indifferent to consequences. I knew my own mind well enough and always had my way, even if I had to fight tooth and nail for it.”

Helen says, “I am not dumb now.”

You put down the mic and hunch over your workstation on the floor. You feed Helen Keller quotes from one pedal into the other, adding to the increasingly chaotic mix. Above and behind you in the projected visionscape, images likewise become disjointed and frantic.

Helen says, “Every one of us is blind and deaf until our eyes are opened to our fellow men, until our ears hear the voices of humanity.”

Helen says, “It is not required of every man and woman to do or be something great. Most of us have to be content to take small parts in the drama of life.”

Helen says, “I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times; but it is vague, like a breeze among flowers.”

Helen says, “I really care for nothing in the world but liberty, liberty to grow mentally and spiritually, untrampled by tradition and arbitrary standards.”

Helen says, “Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”

You hit the loop pedal one final time and the theme song plays its refrain, “Wonderful star of light wonderful star of light wonderful star of light…”

You are done. you look up into the audience, then crawl stage left as if you will exit, but stop at the edge to sit and apparently observe the strangely calm cycling of looping fragments. The soundscape grows louder while the lights, almost imperceptibly, grow brighter, until the stage and the audience are drenched in artificial light.

Crescendo.

Whiteout.

THE END

Star of Happiness promo shot. Godin in silver and black bent over loop pedals on the floor. Cathryn Lynne Photographer.

A Girl Can Never Have Too Many Boys…

Especially when that girl is me!
Last month I was asked by the wonderful David Harrell at Alliance for Inclusion in the Arts to be in his short film that was to be submitted to the 2015 48 Hour Disability Film Challenge.
The genre for all participants was romantic comedy, so with several more guys than girls on our team and more than one disability, “The Kerfuffle” turned out to be a rather strange incarnation of the genre!

Watch me be a romantic lead in our wacky 5 minute short film…

And you can read an article, which includes an interview with me, about “The Kerfuffle” and the disability Film Challenge HERE!