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.

Flaubert’s Rule for Artists: Be Regular? Settled? Ordinary as a Bourgeois? Essay 28 of #52essays2017

“Be regular and orderly in your life, so that you may be violent and original in your work.” –Gustave Flaubert

I first encountered this quote a few weeks back in my Catapult Advanced Writing Workshop with the amazing R.O. Kwon. I liked it and it felt right. Having no set schedule as a writer makes it very hard to allow for the indulgences of friends with location-specific jobs–when you have to show up somewhere, for pay, you do, painful as it may be. But when you wake up destroyed by life and world events and have some stuff to write with tomorrow deadlines, you may be inclined to pull the blankets over your head. In addition, I’ve found that mad debauchery in one’s youth is helpful for expanding one’s mind, or having a certain amount of savvy vis a vis the underbellies of things, but in the days of aging, merely distracts from the difficult job of putting stories and articles together.

This quote of Flaubert seemed to me a perfect invocation of moderation for art’s sake, but when I shared it with Alabaster, he said, “Didn’t Flaubert die of syphilis?”

And I was like, “Did he?” and promptly busted out the Flaubert Wikipedia page in which I read:

“Flaubert was very open about his sexual activities with prostitutes in his writings on his travels. He suspected that a chancre on his penis was from a Maronite or a Turkish girl. He also engaged in intercourse with male prostitutes in Beirut and Egypt; in one of his letters, he describes a “pockmarked young rascal wearing a white turban.”

Gustave Flaubert photographic portrait by Nadar.At first glance, I took this to indicate a lack of order, at least of the sexual variety, and suspected that Flaubert’s quote was more a prescription of how he would like to live than a description of how he did. But as I used to tell my NYU students, Wikipedia is a start not an end in research, so I got ahold of some books.

The first and very beautiful was The George Sand-Gustave Flaubert Letters, in which the two friends and “troubadours” write to each other about the quotidian, art, politics, family, death, disillutionment, hope, and their love and admiration for one another, despite their differences. Throughout, it’s clear that in his later years, of which these letters are representative, Flaubert was a self-imposed recluse. In 1867, his friend grows suspicious of his solitude:

“And the novel, is it getting on? Your courage has not declined? Solitude does not weigh on you? I really think that it is not absolute, and that somewhere there is a sweetheart who comes and goes, or who lives near there. But there is something of the anchorite in your life just the same, …”

To which he responds:

“…no ‘lovely lady’ comes to see me. Lovely ladies have occupied my mind a good deal, but have taken up very little of my time. Applying the term anchorite to me is perhaps a juster comparison than you think.

I pass entire weeks without exchanging a word with a human being, and at the end of the week it is not possible for me to recall a single day nor any event whatsoever. I see my mother and my niece on Sundays, and that is all. My only company consists of a band of rats in the garret, which make an infernal racket above my head, when the water does not roar or the wind blow. The nights are black as ink, and a silence surrounds me comparable to that of the desert. Sensitiveness is increased immeasurably in such a setting. I have palpitations of the heart for nothing.

All that results from our charming profession.”

Ah yes, I can relate! (Except for the rats, and of course, I have a lovely companion in Alabaster.)

George Sand photographic portrait by Nadar, 1864.Alas, the quote in question did not originate in that book of intimate and useful letters. Though the quote seems to be repeated ad infinitum on the internet , I couldn’t find its context. More tantalizingly, I could find other translations that made me want to see the French for myself, for example:

“Be steady and well-ordered in your life so that you can be fierce and original in your work.”

What? Fierce? I think I like fierceness even more than violence.

Then there’s the matter of the omitted “like the bourgeois,” which occasionally creeps in. More often, the English translations ignored the reference to the class of people that Flaubert, under most circumstances, disparaged, although he himself was a member. In Flaubert, a biography by Michel Winock, I read:

“His hatred for his era settled on the bourgeoisie, which in his eyes embodied the debasement of mind, mores, and taste. This criticism reveals some contradictions because Flaubert himself belonged to this class; but for him, the bourgeois was first and foremost the modern man made stupid by utilitarianism, bloated with preconceptions, deserted by grace, and impervious to Beauty.”

In Winock’s biography I discovered that, not only is the bourgeois ignored, but orderly is not the thing at all, but ordinariness, which seems to me much worse! Here’s the translation in Flaubert:

“Be settled in your life and as ordinary as the bourgeois, in order to be fierce and original in your works.”

With this biography I also finally got a date 1876, just a few years before Flaubert’s early death. The date and a few words that I thought I could assume in French helped me find the original. So here we go, Flaubert’s “rule for artists” (“une règle pour les artistes”), en français, written in an 1876 letter to Madame Tennant:

“soyez réglé dans votre vie et ordinaire comme un bourgeois, afin d’être violent et original dans vos oeuvres.”

Gertrude Tennant, ne. Collier. met Flaubert when they were young and flirtatious. Later in life, when this letter was written, Flaubert was 55, George Sand was no longer among the living, and Gertrude was 57, a mother fretting about her adult children, in particular her son. Consolation regarding that son prompted Flaubert to offer the famous quote.

According to her Wikipedia page, Gertrude Tennant helped to edit Flaubert’s correspondence, the very correspondence in which she is memorialized. It makes me a little sad and wistful for the letter writing that brings these long-dead people to me with such intimacy. They seem the very essence of a life. Our written correspondence is rarely so detailed anymore. People are generally put out by long emails.

That said, I do not lament email, the internet, Facebook or even Twitter. They all lend themselves to the propagation of electronic texts. And, as I’ve written before, and will continue to celebrate, the digitization of words has given me access to truckloads of ephemera and substance too. It is an amazing time to be a blind reader, a blind writer, who is able, with a little diligence, to sniff out the original of a quote that so many sighted people were content merely to reiterate.

*This is #28 of #52essays2017. Read #27, about Helen Keller’s opinion of Trump HERE*