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.

A Paris Wasting, Catherine’s story from Death of Godin

Saint Catherine of Siena 19th century painting (anonymous). She wears a nun's habit and a crown of thorns. Her head is encircled by a halo, and in her hands, she holds a cross and a flower.Catherine had been exalting in out of body bliss but the flesh sucked back. I must get up. She rolled onto her belly and lifted dizzily onto hands and knees. She executed a wobbly circle on the futon that lay on the floor and pointed herself towards the kitchen. A kitchen made for one in a studio apartment made for one on the Rue du Faubourg Saint-Antoine, but just exactly like so many other such solitary places she had sublet around the world.

Catherine opened the little refrigerator and slammed her eyes shut. The lurid light pierced her brain. She groped amongst the cold. She took ahold of the distinct jar. Then in the door, the bottle. She pulled it out. So heavy. How would she get these things over there by the window where she wanted to be? Baby steps. Her favorite coach used to say that the only way to do the impossible is to break it down into its constituent parts and tackle one bit at a time. Of course, in the end, you simply had to forget all and just let the horse jump.

With her eyes still shut, Catherine put the bottle in one hand and the jar in the other and slid them ahead as she crawled behind along the narrow path between the futon and the television. When she felt she could go no farther, she opened her eyes and saw the dim dawn filtering through the pale curtains. Her head felt so heavy that she wanted to drop it and the whole endeavor but willed herself to want food and water instead. If she did not fight her body, her mind would surrender to the calm inevitability.

Thankfully, the bottle’s top had already been opened. It exuded a small sigh. She lifted it and drank an explosive sip. She put the bottle down and held the bubbly water in her mouth, afraid to swallow. She lay back carefully, pointing her knees up in defiance of the desire to be prostrate. She tapped the count, One. Two. Three. Swallow. She waited, fighting with all her might not to wretch. Please stay down. The water felt positively poisonous Trampling along her esophagus. It pushed into her lower organs. This was the crucial moment. Though some would argue with her, she did not want to die. It stayed down. Give that girl a ribbon!

She let go the bottle and, still lying down, took hold of the jar. It was an unmistakable shape, bought during her first exuberant week in Paris. She had been eating then. But as the empty days of writing-avoidance stretched on, the old familiar lack of hunger set in.

A Paris month had barely passed when she’d begun translating Baudelaire, even knowing that, though it was gratifying, it was not her novel, merely a diversion with dangerous pitfalls. Almost as soon as she’d started translating, she’d stopped going out. Catherine recognized the signs, but the feeling that she was accomplishing something became her drug and she would not have gotten out of bed without the dictionary and Le Spleen de Paris to draw her. She rationalized that she was preparing for her reimmersion into University life, but it had all been superfluity. The disgust and fatigue soon weighed her down and pressed her into bed. She stopped visiting her desk. Dangerous time had passed.

This was precisely what they—the doctors, her family, her few friends—had all been afraid of. The decision to go to Paris in the summer so long before her teaching position started, with nothing (as they saw it) to do seemed to them an eccentricity fraught with foreboding. For Catherine, it was the writer’s dream. Three months of solitude in the city of writers!

Eyes averted to the ceiling, she unscrewed the top and stuck her index finger blindly into the goo. Then, extending the soiled finger away from the jar, she screwed the top and let the weight of it drop to the floor. She folded her hands, right over left over her ribs. Except for her knees and the straightened finger, she might have been a corpse.

An unsought memory put her eight-year-old self with her friend Michelle at the kitchen table of her family home surrounded by grey paper and charcoal horse drawing efforts. They were eating Nutella and giggling. It must have been a rainy day. Catherine’s cracked lips parted into a painful smile as she remembered the paces she’d put Michelle to when the days were fair. Catherine would set up hurdles and time her friend over them, all the while judging as she would have been judged herself in the children’s competitions.

It had all been so much fun then. When did it turn ugly? It had been gradual, that shift from love to loathing, but the beginning arrived with puberty, when the coaches turned mean and the friends turned competitive and the competitions revealed their ludicrous pomp. When the dream of starting fresh in New York City became a reality in the form of a Columbia acceptance letter, Catherine quit show jumping, suddenly and without explanation. The insular world had been stunned. Secretly she wanted to be involved in what she naively thought of as the real world. She did not want to move blindly through college as she had through high school, thinking always of the next show or the last. Silently she had planned to reinvent herself as a writer and intellectual. But the triple major and endless clubs and activities put her into a fever pitch of excitement that was not unlike her final years of show jumping so that, if she were very honest with herself, her metamorphosis had been incomplete. The truth became undeniable when grad school was put off for the first of her hospitalizations.

Grad school was reclaimed, but from then on, each time she moved, from New York to Russia, China to Honduras, she would think the loneliness and anorexia were gone for good. It was her fatal flaw to believe she was cured. That hubris that suggested sovereign power over self had been inherited from her father. But what fueled Mr. James Mirth, CEO extraordinaire, consumed his daughter. Inevitably, almost without her being aware, the evil twin pillars would rise again out of the seemingly smooth sea of activity and bar her way to happiness. Finally, again, she would have to be rescued from her far-flung existence.

Her family attributed her troubles to her excitable nature, and constantly tried to dampen it. They were not misguided. She had seen for herself on countless occasions that her enthusiasm was off-putting to people who did not know her well. And worse, though she felt it to be right to be passionate, her passions too easily turned into the flames of an insatiable furnace that burned up all mundane appetites.

Catherine had no religious convictions to speak of, but she sometimes felt like her anorexia had more in common with her saintly namesake than might be expected from the average intelligent, cosmopolitan, twenty-first century woman. As a self-examining humanist type, she hated that she did not understand this part of her. She considered her Nutella dipped skeleton finger. She considered her literary ambitions. She felt a failure. She was thirty-three and on the verge of dying a starved virgin in the city of food and love.

Catherine rolled her burning eyeballs to the left at the neglected desk. Could she ever admit this to her pen? Was it somehow lack of honesty that made writing so hard? Her novel suddenly seemed false, a translation of her show jumping prodigy childhood into a concert pianist prodigy childhood. Was it subterfuge or merely an attempt to write fiction rather than memoire? A lesser genre if you asked her.

Her head ached. She could not figure this all out now. The important thing was to fight the urge to give up. She did not want the story to end here.

Letting go of intention, Catherine lifted her hand and kissed the back of it, as you would that of an Orthodox priest, her hand even more boney than those consecrated Russian ones. Thrice she lifted and kissed and then, thoughtless, she put the Nutella into her mouth. Please. Stay down, she prayed to her body. Beneath the waves of nausea that threatened negation, she felt a feeble acquiescence echoing deep in her hollowness.

 

[First published in Newtown Literary Issue 7. You can read about the investigation into the mysterious death of my childhood friend that gave fuel to this story in “The Detective Story Behind ‘A Paris Wasting'”.]