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 Personal Obituary for My Dad, Lee A. Goodin, February 5, 1940-August 19, 2018

My dad, Lee A. Goodin, passed away into other realms on Sunday. He’d been fighting so many illnesses for several years, and yet I hadn’t seen the cardiac arrest coming. Somehow, I thought I’d have warning. Yet he had given me warning.

Earlier this summer, he told me he’d decided to stop aggressive care for the infections that riddled his body from wounds that would not heal. I wrote about that decision, as well as our history of separation and reacquaintance, for Catapult in “The Blind Feeding the Lame: Growing Disabled with Dad.”

I wanted to show that essay to him, to show my love and that he would live on in my imagination, in my writing, and of course, in my heart forever, but I was a chicken. I was afraid he wouldn’t like how personal, how intimate, it was, and so I never sent him the link. I will never know if I made the right decision.

The fact remains that I have written about my dad and will continue to do so.

He once told me that he thought there was a great American novel in our family somewhere. He liked that I was a writer, but did not particularly care for the kind of writing I did. He loved his bestselling Kellermans, and I have not yet brought myself to read one of those. I will now though.

If there is a great American novel in our family, then there is no one else to write it but myself, because our family, at least for a couple generations, has dwindled down to me. He has cousins, who I’ve met through the wonders of Facebook, but my father was an only child and so am I. My parents were divorced when I was very young and my dad remarried, but did not have other kids. My family, my next of kin on my dad’s side, is now gone. And I, being childless, will provide no more.

My dad, Lee Goodin, with chickens in Visitacion Valley, San Francisco, early 1940s.My dad’s mother, Leona Goodin, née Beynon, and her husband Alcidos Goodin, née Godin, likely would have had lots of kids, but Alcidos, a construction worker who helped build the Golden Gate as well as the Bay Bridge, fell off the Rincon Annex, the old main post office in Downtown San Francisco, and died four days before my father, his son, was born. Between that and the fact that the first few years of my dad’s life were lived in wartime, there was something tragic about his early stars, as testified to by the wartime photo of my dad with chickens in the wilds of San Francisco.

However, he grew up as the darling only child, and would enjoy a wonderful life, traveling the world, skiing, drinking, eating, trekking around seven continents.

A man doesn’t need religion or spirituality to be loving and generous

A couple years back, he and my stepmother Terry celebrated their 35th wedding anniversary in their North Beach home next door with their extended Fior d’Italia family that includes the owners, the wait staff, and the revolving musicians of the jazz band that plays there every Wednesday and Sunday. The bandleader asked, “What’s the secret to your successful marriage?”

My dad, sitting in his wheelchair, Beefeater in hand, said, “world travel, fabulous adventures, and great sex!”

My dad was an irreverent and irreligious man. If I write that novel of our family, at the heart of it would be the atheism gene that I inherited from him. He had no religion, and in fact was rather anti-religion. One of his favorite movies, or at least one that he liked to talk about a lot, was Spotlight, about the Catholic Church’s cover-up of priests’ who couldn’t keep their robes down. Even that sentence sounds like something he would say.

But a man doesn’t need religion or spirituality (which he also scoffed at) to be loving and generous.

Once, at Fior, I asked my partner Alabaster to give some money to one of the waiters to buy a bottle of wine for the table. I think it was Gil, who, when he saw Alabaster’s intent, put his hands up and backed away as if he were looking at a gun rather than a couple twenties, saying, “Oh no, not Lee’s table.” In other words, if my dad was there, he was buying.

I now live in Denver, so there’s not much I can do in this strange limbo time before the services–which will be held on Labor Day weekend–but think and write about my dad, and celebrate who he was as a living being, and what he means as a spirit in me.

When my dad went into the hospital for one last short trip, I happened to be reading Zen and the Art of Motorcycle Maintenance for perhaps the fourth or fifth time in my life. Yesterday I came to the end and the afterword, where Pirsig drops the bomb about how his son Chris, who made the trip cross country in the book’s narrative, had been stabbed outside the Zen Center in San Francisco just five years after the book had been published. The part where Pirsig wrestles with the question of where his son Chris went took on new meaning for me. My dad, like me, believed in only this one life, but perhaps he could get behind Pirsig’s idea of the pattern of a person:

What had to be seen was that the Chris I missed so badly was not an object but a pattern, and that although the pattern included the flesh and blood of Chris, that was not all there was to it. The pattern was larger than Chris and myself, and related us in ways that neither of us understood completely and neither of us was in complete control of.

Now Chris’s body, which was a part of that larger pattern, was gone. But the larger pattern remained. A huge hole had been torn out of the center of it, and that was what caused all the heartache. The pattern was looking for something to attach to and couldn’t find anything. That’s probably why grieving people feel such attachment to cemetery headstones and any material property or representation of the deceased. The pattern is trying to hang on to its own existence by finding some new material thing to center itself upon.

My dad, Lee Goodin, and I, in a post-dancing pose, at his 60th birthday bash in Amador City, where he was mayor!I think my writing this as well as all future generations of writings about my dad, attempt to continue the pattern that is and will always be my dad, Lee Goodin.

Peruvian gold

It was the spring of 2017 when Alabaster and I visited and my dad, not yet imminently dying, but also aware that he was not going to have a long time to live, asked if there was anything I wanted. Terry and he had been collecting wonderful objects from around the world for years, but he was, I understood, referring to the things he’d inherited from uncle Art, his mother’s younger brother, who’d been like a father to him, who had been an engineer in the gold mines of Peru.

Remembering the glimmering little figurines that I’d so often seen at Uncle Art’s that sat in a lighted display box of a gold bird and a gold man, I mentioned those. I’m blind now, and hadn’t seen them for many years, and I’d never touched them. My dad directed Alabaster to take them down from the shelf. They were in plastic domes, and we pulled them out. I almost crushed the little man when I tried to pick him up because I never realized they were hollow. They had seemed so solid when I was a child. I’d never suspected they were made of very delicate hammered gold.

It was a strange time to be bequeathed something so valuable. Alabaster and I were basically homeless. We’d left New York and were moving around, staying with friends and family, deciding where to settle next. For almost a year, I lugged these priceless weightless and bulky heirlooms from California to Colorado to New York and back around again, with my dad periodically asking if I’d found a safe place for them.

And, being a researcher at heart, I wanted to know about these things, so I started shooting off emails to museums and appraisers, and getting either no response or non-committal ones that sent me somewhere else.

Finally, we found a Pre-Columbian art appraiser in England, and sent off about twenty photos of the little bird to her.

Two days later, we received the valuation and its notes. ” These animal and mostly bird sculptures came out of a workshop in Lima which was active between the 1950s to late 1960s run by an Italian expatriate,” and was worth about $10-$20.

That was in April, and we went for our last visit in June. I’d alluded to what I’d finally found about the statues, or what had become of them, over the phone, and told him I’d tell him all about it when I saw him in person.

Peruvian "gold" bird, my inheritance misfire from my dad Lee Goodin.

He wasted no time in asking. On our first lunch in our usual table at Fior d’Italia. He said, “So what happened to the statues? You still have them?” He thought I’d sold them, which I might have, or I might have tried to get them back down to Peru, where they belonged. I didn’t know, but the point was now moot.

I took a big breath, put on a big ironic smile, and told him about the appraisal. Alabaster said his face showed shock. Then he expressed doubt that Art, a gold minor and amateur archaeologist, would have been duped about buying fake artifacts. And I said what I’d been thinking. “None of us asked about them. We just all assumed the beautiful little sculptures were real gold Pre-Columbian artifacts, and he let us keep on thinking that.”

Then my dad laughed, and said, “Ah, that old bugger. I bet he’s laughing at us all right now.” It was the only such indulgence I’d ever heard my dad make about some possible afterlife. Then he told us about how Art liked to play jokes on people, and that sounded familiar. He and my aunt Evelyn also did not have kids. They were my only relatives on my dad’s side that I knew growing up, after my Grammy Leona had died when I was ten.

At the end of the Peruvian Gold conversation, I asked if maybe I could choose another heirloom, like “what’s behind curtain number 3, cuz I got a dud,” and we laughed hard at that. It was a very good last visit.

Under the bridge

My dad, Lee Goodin, and I on a boat on the San Francisco Bay.As I said, my grandfather Alcidos was a construction worker whom my dad never knew. He had been born in Minnesota to French Canadian Godins, who were one of the original Acadians who settled in Canada in the 17th century, and then were displaced when the Brits took over. Some of the Acadian Godins moved to Quebec–if you play guitar, you may have heard of the Godin maker, and others moved down to Louisiana to become Cajuns. Others moved south into Maine and then westward, as my Godins did, and settled in other parts of the US. My Godins settled in Minnesota, which is where Alcidos Sinai Godin was born in 1910.

At some point in his travels from Minnesota to San Francisco, Alcidos added another “o” to Godin to make it Goodin, because, as the stories have it, he was tired of being called God in, rather than the French way, which pronounces it like French sculptor Rodin.

If you were wondering why my dad is Goodin, and I’m Godin, it’s because, with his blessing, I reclaimed the French spelling. That said, he never got used to me taking my middle name, his mother’s name Leona, for my primary name.

I wrote a fanciful tale about all this, called “Likenesses: A Family History Through Photos, Real and Imagined,” which was originally published at FLAPPERHOUSE. I brought the zine to him and he read, with me next to him. When he’d finished he said, Katerina wasn’t a seamstress, she was a barmaid.

My dad wanted to be cremated and strewn into his beloved San Francisco Bay, under the bridges his father helped to build. I’ll be traveling back to say goodbye to him for that ceremony on September 1, followed by a celebration of his life at Fior d’Italia on Sunday September 2. His band will be there to play his old favorites, which, tended towards the dark. He loved his lighthearted musicals, but he also loved “St. James Infirmary,” and would delightedly snap his fingers to the macabre lyrics every time.

I miss and love you dad. See you on the Bay.