Fred the Head, and Green Lantern

Tallahassee, Florida–Doak Campbell Stadium–1990

I’m at my first college football game. I should feel ecstatic. After all, I’m doing my first really crazy thing as a freshman in college, something my parents would disdain doing, something I was rarely allowed to do when I was under their roof. And there are 80,000 people around me who are screaming and chanting and thrilled to be doing this same thing.

The stadium we’re in has been nicknamed “The Erector Set” because it’s entirely made of steel, one giant oval bowl made of thin crisscrossed beams and steel floors. Even the seating is made of cheap extruded aluminum in long benches. The entire thing literally quivers and sways with the weight of all the people stamping and waving. It’s equal parts exhilarating and terrifying, because the whole thing acts like the world’s biggest sounding board. It magnifies the crowd noise to a jet engine roar. It makes the marching band sound like the blast of trumpets that brought down Jericho. To overcome the noise, the commentator’s voice has to be amplified to a shout that can be heard for miles in every direction–I know, because I could hear him clearly for the miles it took to get here from my dorm.

But it’s 98 degrees, I’m standing in the blazing sun on what feels like the back of an animal that might just shake us all off at any moment, and I’m the only sober one crushed between the dozen “friends” who insisted on taking me to the game. And they’re not the only drunk and rowdy ones. The entire student side of the stadium is filled with what looks like frat boys and sorority girls all one hidden drink shy of puking on each other. The stink is an unthinkable blend of sweat, tanning lotion, piss, sunscreen, Jack Daniels, vomit, and makeup beginning to run in the heat…and I don’t wear any.

I wanted to enjoy this, as an adult on my own for the first time, among other adults doing their own fun things. Instead I’m surrounded by people acting even more thoroughly like children. And their choice of things to get childish about is dangerous. Everyone is staggering drunk. No one sits–everyone stands on top of their narrow bench seats. They sway and lose their balance constantly. I’ve already been knocked off my bench twice by a surge of falling bodies that took out entire seating sections. Some drunk jackasses ten rows back had decided that it was fun to watch the people falling down like dominoes; I see them pick themselves up out of the trough between benches, laughing. They josh each other around as they wait for everyone else to pick themselves up, too…just so the jackasses can deliberately fall down on us again. The group I’m here with not only don’t see a problem with it, they think it’s hilarious. Meanwhile, I’m already covered in bruises.

I’m feeling very alone in the middle of all these people.

Then, as everyone is almost upright again, I see the jackasses suddenly get very excited about someone coming down the aisle steps from the higher seats. There’s lots of pointing and babbling at each other and then, to a man, they erupt into what I can only describe as fanboy screams. It’s like a rock star is passing them by. I’ve heard that FSU has quite a few famous alumni, so I wonder if perhaps it’s one of them. Suddenly everyone else is craning to look, too. Everyone, including the jackasses, has forgotten about getting knocked down.

I see a huge guy, wearing a dapper yellow polo shirt tucked into khaki shorts. He looks like Mr. Clean, plus a big handlebar mustache and minus the earring. He’s as crisp and put-together and sober as everyone around him isn’t. And yet, he’s beaming–one of the biggest, most genuine smiles I’ve ever seen on a guy that imposing. He is visibly thrilled to be here at Doak Campbell, surrounded by all this noise and craziness. It’s obvious there is no place he would rather be. It’s like he’s breathing the experience in alongside the oxygen in the air, and getting sweetly, gratefully high off both.

The friends who brought me here are sophomores, and they immediately know who they’re looking at. They begin clawing at me for balance as they jump up and down on their benches and point in excitement.

“Oh my God, it’s Fred the Head!”

On top of his bald head is a perfect Seminole logo, lovingly and accurately hand-painted by a skilled artist. It must have taken hours. I’m close enough to see that somehow, he’s not sweating the paint off in this insane heat.

He’s mastered the art of moving quickly through adoring crowds. The trick is never to stop. Keep moving and you can’t get mobbed. He knows this, and he’s using his size and presence to keep plowing down the aisle steps at a slow but steady pace. Even the jackasses give way without bothering him too much. And it’s obvious he’s headed toward the TV crew waiting at the bottom of the stairs, field-side. The producer is beckoning him for a closeup.

For just a moment, Fred slows when he’s next to me on the stairs. The woman with him looks a little alarmed, and checks for another way out of the mob she knows will harden around them. But he deliberately takes that long moment to look me in the eye.

Maybe I’m wearing a look of confusion as to what the hubbub is about. Or maybe I just look as long-suffering as I feel. But a complicated expression goes across his face in answer. His face plainly says, “I see you. It’s crazy out here, isn’t it? People are being kinda rowdy. But hang in there. I promise you’ll see why I love it here. It’s worth it.”

And suddenly he’s back up to speed and plowing through the crowd again. The crazier fans are jockeying for position around Fred at the rail. But even the rowdiest is careful not to jostle the big man or his female friend too much as he grins and bends down to show his head to the camera. Even the craziest of the crazies is thrilled, not to be the center of the shot, but just to have the honor of being the screaming fool pointing at Fred’s head.

Suddenly, I’m feeling much kinder toward the fans around me, and I decide to be kinder to myself, too. I excuse myself to get a cold drink, and end up in a gate-crashed nosebleed seat with room to spare. I can actually sit down in my so-called “terrible” seat, because no one else wants to be up this high. I’m feeling much better about life in general. I can breathe. I can stretch. I know the group I was with hasn’t even noticed I’m gone. And as the game itself becomes a wild ride of highs and lows–as the crowd pays less attention to its drunkenness and more attention to the game–I begin to see what Fred the Head loves about this place. It’s 80,000 people screaming their hopes for the players and moaning with them in their defeats. It’s 80,000 people celebrating a common goal. It’s loud, and rowdy, and sweaty, and hotter than the ninth level of Hell, but for those few hours I forget my life and revel in our team’s successes…just like Fred.

***

Tallahassee, Florida–Tennessee Street–1998

I’m stopped in morning traffic on my way to a job I hate. It services my student debt load the way a victim might plead with a loan shark not to break her legs. The morning drive has become a daily battle to screw up my courage, to face myself alone in the car for twenty minutes, as I ask myself why I’m there and which choices brought me to that standstill and how I might rescue myself. I have yet to arrive at anything like salvation.

Horns far behind me blare, in a vector that’s coming steadily closer despite the fact that no one is moving. Like the wave at a football game I can guess how long it’ll take to get to me. I glance in all my mirrors and can’t tell whether the horns are for some emergency I cannot see, or for me. The driver behind me doesn’t seem like a bad guy; he looks as confused as everyone else. I can only wait for whatever disaster it is to reach me, and I’ll accept the damage and move on with what passes for my life.

The horn right behind me sounds. The traffic in front of me still hasn’t moved. There is nowhere I can go, so the horn can’t be for me. I check my mirrors again. The guy behind me is waving at someone on the sidewalk. I crane to look.

Beside my car suddenly is Green Lantern.

I mean to say, it’s a skinny guy jogging in a homemade Green Lantern costume. Green booties over his running shoes, green and black bodysuit with the big Lantern symbol, green cape, green gloves, green mask. Above the mask he has a thick shock of wavy brown bedhead. He also has an elbows-flailing head-down long-legged lope, and I don’t remember Green Lantern ever having a cape. But even for all his awkwardness, the guy’s pace is as enthusiastic as his waving to the stopped cars. He’s past my line of sight and gone quick. He’s certainly faster than I am in my car.

Every driver around me is grinning, waving back, sounding their horns. It takes me a moment, but I add a little meep to the chorus of thanks. Even I feel momentarily rescued from my life.

***

Midlothian, Virginia–2019

Only later, after I’d seen Fred dozens of times at both home and away games, did I realize that the stadium police used him as a strange form of passive crowd control. Wherever he went, people would immediately forget whatever stupid, dangerous thing they were doing and erupt into celebration that Fred was there. Such was his presence. Such was the infectious nature of that huge, huge smile.

He had the gift of making you feel like you were the only one in the room…even if that room had 80,000 screaming drunks in it…even if the room was your living room on the other side of the country from the game, and you were only seeing Fred on your TV. As TV people sometimes say, “The camera loved him.” And that only happens when the person on camera loves everyone. He was a presence much larger than one body, even a body as massive as his. Every TV crew in America knew it, too. And so did we Seminoles fans.

Green Lantern made every commute into downtown feel just a little bit more fun. Over time he branched out into several different costumes: Batman, Robin, Green Arrow, even something all yellow at one point (though I couldn’t tell what–I never saw him closely enough that day, I was running late). He became a repeat story among locals: If he didn’t show up for a run, everyone wanted to know where he was and if he’d come back. He always did, often with a new costume.

Fred the Head and Green Lantern had an awful lot in common. They both lived large, and brought a lot of joy to people. Whenever they were around, everyone wanted to follow their progress, like a shooting star across the sky.

They also both disappeared young. Fred died of a heart attack caused by a congenital blood clotting disorder just two years after I first saw him. He was 38 years old. He’d been a fixture at every FSU game for the better part of a decade. I don’t know if there was ever a news article about Green Lantern–I only ever heard rumors that he died of cancer. Whatever his fate, it happened quickly. He visibly wasted after just a few short months. Then one day he didn’t take his run alongside Tennessee Street, and though I hoped to see him return in a new outfit, I never saw him again.

The hole Fred left in the FSU crowd was palpable. Over the years, other fans tried to fill that hole with only partial success. The longest-running was a pair of goofy boys we nicknamed “the devil twins,” who showed up to every game clad only in horns, tails, a towel wrapped around their swim trunks, flip-flops, and body paint in FSU team colors. But no one, no matter how big in attitude, could replace Fred the Head.

I have often wondered if he knew about the clotting defect–if he knew he was living on borrowed time. It might explain that hugeness of spirit.

I’m certain that Green Lantern knew what was happening to him, whatever it was. No adult wakes up one morning and says, “I’m going for a run alongside the most heavily traveled street in town while dressed as a superhero.” A person might go to a hospital dressed that way to cheer up kids, sure. Or a person might show up to a Halloween party that way. But to commit to running miles, day after day, in the worst heat imaginable, dressed in several homemade costumes…that takes a level of dedication that requires, but perversely can’t be founded upon, a special kind of insanity. It’s a form of insanity that makes your need bigger than any social stricture you’ve ever been raised to be fearful of.

So how did these two people become so much bigger when faced with something awful? What is the prerequisite for such meteor-bright living? How do you live like a burning Roman candle while dying, when those people around you who have all the theoretical time in the world keep living such tiny, contracted, boxed-in lives?

The answer can’t merely be that a doctor looked them in the face and said, “Put your affairs in order.” I’ve had that happen, and it didn’t lead to any flowering of my spirit. If anything, it caused me to contract even further into my life than ever. I take no risks at all now. I’ve signed away even the most manageable of the risks that I used to take, and I was never much of a risk-taker to begin with. There are days that I’ve become so tiny and fearful that my heart races at the idea of going to the grocery store. I have to take Valium to get through a half hour plane ride. Even the idea of fulfilling some bucket list of adventures just makes me scared and overwhelmed. On a good day, when I try to relax, I can feel that my entire body is balled up like a clenched fist.

I don’t glide through massive crowds with a smile on my face like Fred did. And I certainly don’t pelt alongside Tennessee Street looking like Green Lantern.

So what was their secret? What did they learn that I haven’t yet? And do I have to actively be dying in order to learn it? I really hope not.

Luckily, I’m not at all convinced that being afraid of dying is the thing that sets off a rush of voluminous living. I’m not even convinced that “voluminous” is the correct word I want…and I think that’s for a reason.

Fred and Green Lantern hadn’t become something more than themselves. They’d just become more of themselves. When faced with the abyss, they committed themselves fully to what they saw as the only things they could be. Fred became the ultimate FSU fan because he couldn’t imagine being anything less. Green Lantern doubled down and down again on running around in superhero costumes because that was the one thing he wanted to focus on.

I keep beating myself up for not being crazy, taking risks, living loud…but what if those were things I never truly wanted in the first place? Yes, the anxiety thing is definitely less than an optimal response to my situation…but who says Fred the Head and Green Lantern never suffered?

When faced with the possibility of the abyss, I’ve become more myself. I’ve doubled down on family, on living quietly rooted in one place, and on living with integrity and care for those I love.

This is not something to be ashamed of. It’s also not something to be compared to people like Fred the Head or Green Lantern. It’s simply not apples to apples. I’m not a former FSU football player who loves the camera, and God knows I only ever run when chased.

I’m just me, an introverted writer who loves the hell out of her family and friends. I’ve never wanted anything more than to be surrounded with those I love, quietly, serenely. And when those I love can’t be here with me, I want nothing more than a book in my lap and a cup of coffee at my elbow.

Fred had his head, Lantern had his fluorescent green. At my desk, I’ve got my Sermons.

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DWDs

This can’t be a long one today, as I’ve got reading to finish for group tonight. But today something stuck in my craw, and it was yet again caused by a DWD.

Allow me to explain.

I have my MA in English, which means I’ve read (and continue to read) an awful lot. I crank through (on average) a hundred pages every other day. But the regrettable part of the degree I earned back in 1997 is that the overwhelming majority of recognized Western “literature” at the time was written exclusively by white men of the 17-20th centuries. Minority perspectives weren’t valued, and therefore weren’t studied.

That was beginning to change even then, thank God. The canon of recognized Western literature had finally begun to expand past George Eliot and the Bronte sisters and Mary Wollstonecraft Shelley. Virginia Woolf and Gertrude Stein and Pearl Buck had been around long enough to be grudgingly accepted as female elder statesmen (heh!), so when some rebel professors starting throwing Alice Walker and Maya Angelou and Zora Neale Hurston into their curricula, and following them with Sandra Cisneros and Isabel Allende and Maxine Hong Kingston, there was grumbling, but very few folks dared say boo. And when a few more voices got added–non-gender-conforming voices, or voices that reported the truth of their history in other places destroyed by white colonialism (not “just” by slavery)–even the powers-that-be recognized that things were finally, glacially, beginning to change. No one was going to throw Shakespeare out with the bath water, but by God we were going to make sure there was representation of something other than what was derisively referred to (in private) as “DWDs” or “DWGs.”

Dead White Dudes. Or Dead White Guys.

I prefer DWD, personally, because it echoes the acronym for Weapons of Mass Destruction (WMD). Which, let’s be honest, if you’re looking for the poster child for the overwhelming majority of the destruction perpetrated worldwide over the last three centuries, the picture is of a Dead White Dude.

Now, to bring this post to a far more mundane pet peeve of mine…

DWDs are still around, of course. And they still have a lot to say. Unfortunately, they always seem to spew their bullshit at me in the grocery store.

I mean seriously, DWD-behind-me-in-line: How is it your job to comment (with a sneer) that the young family in line ahead of me has “enough food in their cart to feed two families”? What possible business of yours is it that they might “stretch their kids’ stomachs by feeding them too much,” and thereby make them get fat? Who died and made you king, jerk? (Even more bizarrely, the family in front of me was quite healthy, whereas Mister Judgy could’ve stood to miss a few meals.)

I wish I could say this was the only time I’d been startled sideways by wildly snarky, nasty behavior on the part of DWDs. It’s so not.

A DWD once pulled a cart out for me at the store. I thanked him, took the cart, and went about my business. The DWD apparently either didn’t hear my thanks or felt that I hadn’t thanked him properly, because he proceeded to stalk me through the store, with a huge, aggrieved frown on his face. I was confused as hell. It took me a while to suspect what was going on. When I finally figured it out, I made a big show of beaming at him and making way for him to pass me in a crowded aisle. Only then did he smile back, and the stalking stopped. Who in their right mind thinks, That person wasn’t polite *enough*, so I’m going to physically threaten them? Only a DWD.

My daughter wears cotton harem pants every day. She cannot wear jeans, or leggings, or anything else snug. It’s a tactile thing, part of her Sensory Processing Disorder (SPD). To her, jeans feel like sandpaper, and leggings feel like she’s being tied with ropes. For years I had to hand-make her clothing, because there seemed to be nothing available for children with her sensitivities. It was exhausting, and expensive, and she flew through sizes so fast I simply couldn’t keep up. Then I discovered dance pants, and harem pants, and gaucho/palazzo/yoga pants. I was so grateful to hang up my sewing. And the patterns! The cloths! Oh man, they’re so cool! There is such wonderful stuff out there (courtesy Google) that I find myself getting a mite jealous of her style. And all ages and shapes and colors of women (especially teachers!) stop us with gasps of joy everywhere we go: “Those pants are amazing! Where did you find them?” And my daughter beams as she shares a list of webpages from memory.

Yet every. Single. Time. there has ever been a snide, nasty comment made about my daughter’s pants, it’s come from a DWD.

“You look like you should be in Aladdin.”

“Why doesn’t your kid wear normal stuff?”

“Can’t your kid wear jeans like everybody else?”

“What the hell is your kid wearing?”

Some of these jerks even manage to misunderstand that my daughter is my daughter, and not a boy. Because in their DWD world, all little girls are supposed to have very long hair. (News flash, jerkface: She wears her curling golden hair short because it frames her face perfectly and she prefers it that way. She’s allowed to wear her hair short, you DWD. And even if you were her father, which you’re emphatically not, you still wouldn’t have a whole lot of say in the matter. So go off somewhere and fulfill the first D of your acronym.)

I can’t begin to describe how much it pisses me off to see my daughter’s face crumple, when some DWD has yet again intruded onto her life with evil, unasked-for commentary.

A truly disturbing amount of my Facebook feed is populated by white men I used to consider intelligent friends. Then they got old, and somehow they now feel the need to inform everyone of how things shouldn’t be. These newly-minted DWDs seem to think that they’re entitled to pour their anger out over everyone, issue by issue, and then they have the nerve to get affronted when someone like me calls them out on the absolute vileness of their behavior.

Dearest DWD, would you dream of saying something shitty (like those pants comments) to a father escorting his child? Then why do you feel entitled to say it to her mother, then? What happened to basic civility? What happened to manners? What happened to “If you can’t say something nice, don’t say anything at all”? Don’t you pride yourself on having been “raised better”? Well I’m here to tell you, DWD, if your mama was still alive, she’d smack you in the face for behaving so rudely. My daughter’s harem pants are clean and modest (and pretty damn jazzy, if I do say so myself), and an affront to no one. But for damn sure, buddy, your attitude is an affront to me. And judging by the look on my daughter’s face, she knows you’re being a shithead, and she’s only ten.

What goddamn business was it of that DWD’s what a young family bought as they peacefully finished up their grocery shopping? What had they done to deserve such criticism? And since when do I look like the proper repository for such an aside, anyway?

There’s your answer, dearest DWD: you shared that comment with me about someone else’s groceries because you knew it was shitty and you were too goddamn chicken to be mean to their faces, so instead you waved your handful of manure under my nose instead.

I’m growling even at the memory of it.

As an undergraduate English major I couldn’t wait for DWDs to quit dominating written discourse in my native language. And as a mother and woman, I can’t wait for DWDs to quit ruining spoken discourse, too. I worry that too many of my contemporaries are following in the footsteps of older, more-nearly-dead DWDs. And they’re getting more aggressive about it as they do.

I need to speak louder. I need to quit being nice to these jerks, trying to finesse their bad manners in person. Instead I need to call them out on it. Loudly. Because otherwise the discourse simply won’t change.

What do I say?

What do I say…

…when I come face to face with the person the world failed…when I’m the person for whom everything went right?

I’m one of two OM patients in my town. The other patient and I had the same testing, the same doctor, even the same clinical trial. But for her, all those things went horribly, horribly wrong. A bad biopsy of her (mosaic) tumor gave her and her doctor false results. The biopsy results led to what turned out to be a disastrous treatment course. Then, when the real state of things was finally revealed and she was treated properly and referred to the trial, she was randomized to the arm that has since been suspended as a colossal waste of time and effort. She is now metastatic, with unresectable tumors in multiple places.

While I’ve been bitching about possibly having to learn how to self-inject MS medication daily, the other patient…

…has been giving her stuff away.

Christ.

If that weren’t bad enough, I’m personally part of the world that failed her. She had reached out to me a year and a half ago through the trial, wanting to get together and commiserate and compare notes. I said yes. I promised to get in touch after I got home from the trial trip she’d caught me in the middle of. And then…

I didn’t.

Life happened. Bedbugs. Lice. Toxicity, and lymphadenopathy. An FNA. Possible lymphoma, possible thyroid cancer. The paresthesias got busy again, and an LP happened, and suddenly MS entered the picture. Through it all, I kept thinking, “I’ve got to call her!”

And somehow, I never did. I got scared that I would try, and reach only a grieving husband. I kept hoping that my hearing nothing from the trial crew meant the other patient was as okay as I am.

Instead, by complete accident, I came face to face with her at LabCorp. And the news is just as terrible as I’d feared. She’s getting bloodwork as part of preparing for possible surgery in a few days…a surgery that, at best, might buy her a few years. Without a Hail Mary, she won’t see another Christmas.

What do I say?

I’d never really had a motto in life, except for something nebulous like, “Be kind.” But for the last two years, the motto that’s been ground into me, day after day, has been this: “Be grateful. It could be worse.”

I walked into that LabCorp today having already spent a long time crying. I was overwhelmed by the reading I’ve been doing about my MS diagnosis, and the medication costs, and the prospect of daily self-injection. I walked into that LabCorp feeling sorry for myself, and wronged by life.

I walked out with my face still stinging from the cosmic bitch slap I’d received. Life spoke to me and said, “Not only have you been very lucky, little girl, you’ve been doing a piss-poor job of paying that luck forward to others who needed it more.”

The other patient was both kind and gracious as we exchanged numbers. She was glad to have met me. I’d rather she’d have gotten angry at my unintentional ghosting. Then maybe I could have burned off some of this shame that’s trying to smother me.

What do I say?

The Envoy of Mr. Cogito

I love and admire poetry, and wish I could write it. In those rare instances that I find a piece of writing that encapsulates a hugely complex emotional territory in just a few lines, it’s always a poem. You’d think it would be an excerpt from something larger, something of a size with the subject matter. Nope. It’s always a poem, fired like a single arrow from horseback.

The Envoy of Mr. Cogito
BY ZBIGNIEW HERBERT
TRANSLATED BY BOGDANA CARPENTER

Go where those others went to the dark boundary
for the golden fleece of nothingness your last prize

go upright among those who are on their knees
among those with their backs turned and those toppled in the dust

you were saved not in order to live
you have little time you must give testimony

be courageous when the mind deceives you be courageous
in the final account only this is important

and let your helpless Anger be like the sea
whenever you hear the voice of the insulted and beaten

let your sister Scorn not leave you
for the informers executioners cowards—they will win
they will go to your funeral and with relief will throw a lump of earth
the woodborer will write your smoothed-over biography

and do not forgive truly it is not in your power
to forgive in the name of those betrayed at dawn

beware however of unnecessary pride
keep looking at your clown’s face in the mirror
repeat: I was called—weren’t there better ones than I

beware of dryness of heart love the morning spring
the bird with an unknown name the winter oak

light on a wall the splendour of the sky
they don’t need your warm breath
they are there to say: no one will console you

be vigilant—when the light on the mountains gives the sign—arise and go
as long as blood turns in the breast your dark star

repeat old incantations of humanity fables and legends
because this is how you will attain the good you will not attain
repeat great words repeat them stubbornly
like those crossing the desert who perished in the sand

and they will reward you with what they have at hand
with the whip of laughter with murder on a garbage heap

go because only in this way will you be admitted to the company of cold skulls
to the company of your ancestors: Gilgamesh Hector Roland
the defenders of the kingdom without limit and the city of ashes

Be faithful Go

***

Zbigniew Herbert, “The Envoy of Mr. Cogito,” translated by Bogdana and John Carpenter, from Selected Poems of Zbigniew Herbert. Used by permission of Oxford University Press, Ltd.
Source: Mr. Cogito (1993)

Sermon on What We Leave Behind

I’m in some strange mental territory here, so bear with me a while. I hope to make it worth our time.

First things first, though–disclaimers.

No, I have not received any sort of terminal diagnosis. I am, so far as I know, absolutely no closer to dying today than I was yesterday. Unless, of course, you count the totality of my days being minus one. In which case, sheesh, whatever dude. That’s true of all of us.

And no, I’m not thinking of hurting myself, either.

I am, however, in a strange frame of mind because of something kinda, well, off my usual topics of discussion: gardens.

Yes, I’m blaming gardens for this.

I should explain.

***

Fall usually fires me up, with hot comfort food and long cool days. I enjoy being outside in fall, and I love holidays that encourage me to hang out with family and friends. But this year, we got no autumn at all. Summer shook hands with winter, with daily temperature swings in the neighborhood of forty degrees. Then the heat ran out suddenly, like a fire smothered with a bucket of cold water. I’ve been bottled up indoors like a recluse, first from the heat, and now from the cold and rain, for months straight. We had to curtail our pumpkin hunting because of rain and a vicious wind. We stamped through a Thanksgiving Day pie walk as fast as we could, pummeled by a wind chill that put us nearly at single digits. I haven’t even gotten to work in the yard this year. Not once. It was a blazing hot summer and then a burning cold winter, with the only breaks in that weather being pouring rain.

Frankly, this weather has been pretty bad for my mental health.

On a dreary day last week, when the clouds were low and the rain splattered the windows and the cold was seeping into my bones, I looked out my windows at the remnants of leaves left on the trees and felt pretty empty. This nameless season (I couldn’t really call it “fall;” that would imply that we’d had an entire season that could’ve deserved the title) made me think, Damn, I need a hot meal, and I need to see sunshine, and I need to see something pretty. But I had neither the time nor the energy to go all the way to the art museum for something pretty, and God knew I wasn’t going to get sunshine on such a nasty day. So I settled down on my couch with a hot lunch and Netflix, and hoped to find something that could fill the big cold empty in my heart.

I found, of all things, Monty Don’s Italian Gardens.

I like Italy a lot. I’ve only been there once, mind you, so it’s not like I have tremendous history with the place. But even back in 1993, when my sister and I went through Venice and Florence and Rome, we needed Italy. We’d been to all kinds of wonderful places in our European trip, yes, but we were two Florida girls who’d just spent three straight weeks under-dressed for rainy latitudes akin to New Jersey, New York, and Canada. Before Italy we were tired and cold and sick in a way that only travelers can get. We even passed up the chance to go with a friend to see Austria, because we wanted to see Italy instead. I’ll freely admit, it wasn’t for the history, or the art, or the food. We just wanted to be warm.

Riding the train into Venice, the water all around us a sheet of blued steel melted flat by the sticky heat coming in the windows, our train tracks a line disappearing into the heat-haze of the lagoon, I swear to you that I felt my bones soften.

And I was 20 then, and in perfect health.

So, 46 now, and in not-so-perfect health, once again stuck (by choice) for a bit too long near those cold damned latitudes, I felt the big cold empty that had replaced my heart and my sense of personal comfort. When I saw the Netflix thumbnail for Italian Gardens I thought, Oh yeah, that’ll do.

And it did. Just seeing that many huge trees baking in the sun, hearing the rustle in the leaves, watching the obviously warm breeze playing with the host’s shirttails like a mischievous kid…oh yeah, that did a lot to help my attitude. I didn’t even need to binge the show. Just one hot meal plus one sunny garden, and I could get back to paying bills and shuttling laundry without feeling like I was dragging my body and my spirit around from within a broken iron cage.

I immediately recommended the show to my family, and they’ve enjoyed it, too, though I suspect not for the same reasons. After all, they still live in Florida. They assume the world is going to be hot the way I assume the world is going to be cold. They can enjoy and appreciate Monty Don and his Italian gardens, but they don’t need it. I do.

***

And that need led to the strange thought process of today. Because it occurred to me, with that sideways slide of the mind that heralds a thought that I’d never entertained before–hadn’t even seen before, let alone considered–that what I needed most about those gardens was the way they made me feel. Yes, I wasn’t actually there, in the sunshine and the breeze, but they reminded me forcibly of times that I have been. And those memories, of warmer times with a happier version of myself, have been a tremendous boon during the last two years. When my body and spirit are feeling pinched and trapped and cold, stuck in an iron-hard reality that isn’t friendly, I need to be reminded that things like warmth and light and welcome-ness exist. I need to feel them.

Monty Don’s Italian Gardens isn’t a “gardens of the rich and famous” show (though it can be at times). I hate that type of show, because I’m not wowed by either riches or fame, or what those things can buy. To me, all that is a waste of resources, and, worse, it’s a giant fuck-you to the world if the person who owns all that is a greedy, worthless bastard. MDIG can be forgiven its occasional “rich and famous” moments because the people who made those gardens are a few hundred years dead, and their hubris has since been subsumed into the dedication of the people who make maintaining those gardens a labor of love today.

What MDIG does, mostly, is focus on how a particular garden is experienced by the individual as he or she stands in a particular place, and how it makes them feel. It’s about what vistas are presented. What sounds or smells can be experienced. How the gardener achieved those particular effects, and, more importantly, why the gardener chose to do those things for the person traveling the garden.

There’s an old saying that goes, “A person may forget what you said or did. But they will never forget how you made them feel.” And if my life is to be summed up–as a garden is a miniature summing-up of someone’s particular vision of nature–how would it make someone else feel? Especially, as in the case of these gardens whose makers are centuries dead, if I’m not there to escort the viewer and curate my efforts and apologize for their shortcomings?

It’s something of the old question, “What will I leave behind,” but it’s more than that. How would my accomplishments (or lack thereof) make someone feel, regardless of whether it’s about me or about their own lives? Has my life helped someone feel better about themselves, or about their place in the world? If the answer is yes to any of those questions, then how did I accomplish that effect, and do I have the time left to do more of it, and better? And if the answer is no, on what do I focus my efforts so that I can change at least one of those negative answers to a yes?

***

The last two years, for me, has been a crash course in realizing that many of the things that I’ve been taught by my culture as being appropriately grand endpoints for the building of “legacy”–things like lots of kids, lots of money, big projects, health, youth, beauty, fame, whatever–were either not available to me personally, or were never anything but a pipe dream for anyone. Lots of kids just means each gets progressively less parenting and progressively less security, as your resources get spread thinner and thinner; having lots of kids is no guarantee that you’ll raise even one kid who would be a boon to your old age. Lots of money buys a modicum of comfort and security, but it’s still no defense against old age, infirmity, and death, and it brings with it the question of which deals were struck with which devils to acquire it all. Big projects fail more often than they succeed; health and youth are fleeting; beauty, too; and don’t get me started on the shit-show that fame can be.

So what, in a cynical and kinda broken world, will really endure?

MDIG points at an answer. Those gardens endured, not because people were wowed by their long-dead makers, or just because the gardens themselves were beautiful (lots of beautiful stuff disappears forever every day). These gardens make people feel good to be alive. They make people feel, if only briefly, better about living. And people return to these places over and over again, and resurrect them from being bombed out in wars, and protect them from the works of nature and man, not just because the gardens are beautiful, but because the gardens make the people feel beautiful, too. It’s beautiful just to be there, seeing those sights and smelling those smells and breathing that air.

And since every human life can be viewed as a garden of some kind or another, what does my garden look like? Is it beautiful? Does it make other people feel better to be there? Because I’m pretty sure that that is the only legacy that endures: a beauty that people can revisit and respond to and put their own mark on and link to their own experience. What we leave behind accomplishes nothing if it doesn’t manage to take on a life of its own.

***

That’s why kids are often the best legacy that most people can aspire to: because the kids grow up and, using the beauty their parents instilled in them as a launch pad, they develop beauty that is uniquely theirs, and then pass that along to the next generation.

A beautiful painting can be admired, yes, but can anyone touch it? Can anyone ever improve it? And what happens when it burns?

Lots of money can be admirable in its own way, yes, but can a spreadsheet embrace you? Can it make you laugh? And what happens when it’s spent?

Kids and gardens are a lot alike in some ways. They’re both growing things that can give great comfort and love to people that their makers will never meet.

So, my question remains: what kind of garden has my life made thus far? Is it a garden that people like? Do they feel more beautiful for having entered it? Can my garden endure, and take on a life of its own when I’m gone? Has my garden been enough of a protection and an inspiration for my child to grow one of her own someday?

What will I leave behind? And how will it make people feel?

To save time…

I have several t-shirts that are hand-me-downs from my husband. After one too many hot-wash-and-dries (a laundry requirement when I’m a cancer patient living with an elementary-age child and a man who works in hospitals), a shirt of his will shrink too much to wear politely anymore. He may not care if his gut shows when he lifts his arms, but I do. And even he is annoyed by a shirt that’s shrunk across his shoulders. He bitches about it, but it’s a fact of life for 6’2″ guys that clothes will just get too small sometimes. And when they do, if they’re still usable, I get them.

There’s a particular t-shirt that I hated to inherit, even though it’s comfortable to me. I refuse to wear it in public because its message is so rude. It reads, “To save time, let’s assume I’m never wrong.”

A little context is required. My husband is a Field Service Engineer. He fixes x-ray and ultrasound machinery all over the state. He drives more than around-the-world in mileage every year. If memory serves, in twelve years on the job, he’s gone through four vans, ten windshields, four laptops, three phones, and nearly a half million gallons of gas (and that’s not at all unusual). He’s often on call. He has to be prepared to troubleshoot and repair over 2,000 kinds of hospital equipment just for his company, and has to be able to at least troubleshoot all the competitors’ stuff, too. His job is so difficult it’s been recognized by Forbes Magazine as one of the top ten most stressful in the US. Even at his first interview for the job, his soon-to-be boss said, “If you feel like you’re drowning, that’s normal.”

So, my husband is used to being the guy everyone expects to save the images marooned in a broken machine…while there’s a technician nearby consoling a patient weeping in fear that those images will be lost, the radiology administrator is poking his head in every five minutes demanding to know when the machine’s going to be fixed, and the hospital IT guy on the phone keeps insisting it’s not his problem. And did I mention the equipment he works on can be worth millions, and sometimes carries 14,000 volts?

Yeah, stressful. He’s used to having to trust his troubleshooting, mechanical, and IT instincts even when confronted with an unholy level of outside criticism and doubt.

So when his mom found that t-shirt, “To save time, let’s assume I’m never wrong,” it resonated on a whole bunch of levels. He hated to let me inherit that shirt. It’s not that he’s cocky–the main reason he wants to leave his job is because of those moments when a patient is weeping nearby and he’s the only one who has a shot at saving them more invasion and pain, especially if it’s a child. Cocky is a far cry from describing how he feels in that moment. All he can think of is what happens if he fails. But in that moment is when he really wishes the message, “To save time, let’s assume I’m never wrong,” could be gotten across to the other adults in the room…so they would shut up, quit wasting his time, and let him get his job done as quickly and accurately as possible, so that poor kid can get the needles out of her and go back to her life.

That’s the context. Unfortunately, that’s also still his dayjob, twelve years after he discovered it was an unholy bitch that couldn’t be paid highly enough.

I remain profoundly grateful for him on many levels. He keeps the roof over our heads, the food in our bellies, and the health care coverage we all need. And he keeps doing it with a job that’s slowly killing him. (Don’t believe me? Ask any of the other FSE’s who have suffered heart attack, stroke, seizure, broken bones, or massive lacerations while on this job.)

But I’ve had his shirt for a few years now. And unfortunately now I have context for it, too.

***

Two years ago, my legs went numb while I was training for my black belt. I was fine to walk, drive, climb stairs, etc., but the sensation in my legs and groin disappeared over the course of four days. I cut my leg and didn’t feel it. I had to perform daily self-check like a leper.

At the time, I assumed it was something structural in my back or neck that caused the problem. Weeks of spine and neck imaging later, it was discovered that I had no structural problems, but I did have demyelinating lesions on my spinal cord. I was referred to a neurologist. But, as a last-minute call, my neurosurgeon ordered a brain MRI, knowing that my neurologist would like to have it already in-hand.

That’s when they found Bad Bob, the 16mm ocular melanoma tumor in my left eye.

All priority in my health care went to Bad Bob. PET/CT, iodine plaque brachytherapy placement and removal surgeries, biopsy, testing, and sudden referral to a clinical trial–which required more MRIs, CT, bloodwork, and ultrasound–took precedence over the slowly-resolving numbness in my groin and legs. Suddenly, I was that weeping patient in the corner, a too-close-to-home addition to my husband’s nightmares.

But the numbness largely resolved, and so my neurologist chalked the lesions up to myelomalacia (spinal bruising caused by too much taekwondo) or neurological paraneoplastic disorder (an unfortunate friendly-fire immune response by a body dead-set on killing the cancer it knows is there somewhere). She scoffed at my insistence on telling her about my direct family history of “brain lesions consistent with MS.” As she put it, “I won’t base my treatment of you on a non-diagnosis of a family member.” When I clarified that the only reason my family member had a “non” in front of her diagnosis was that she refused (rightly) to be subjected to the battery of invasive testing required to get an official diagnosis, my neurologist scoffed again. “MS is not genetic,” she replied. “Even if your family member has MS, you having MS too would put you very much in the minority.”

Fast forward two years. I developed a new numbness over half my rib cage. I brought this to my neurologist, who had been pushing me through more spinal MRIs than I could count over the last two years, just to keep looking at lesions that weren’t changing at all. And I reminded her that it had been two years since anyone had ordered an MRI of my head–the place that all-important cancer had originated. She grudgingly ordered another t-spine MRI, and an MRI of my brain.

When the latest spinal MRI revealed a new thoracic lesion–long past the time that Bad Bob should’ve been dead and I’d removed all impact from my taekwondo–and a teeny tiny demyelinating lesion in my brain, I reminded her, one last time, that MS appears in my family.

My neurologist became angry. “Your cancer is a fact,” she bit off, bunching the fingers and thumb of one hand together in an accusing point at my face. “It would be irresponsible of me to even consider MS as a diagnosis.”

I set my jaw and told her I had developed visual disturbances my ophthalmologist couldn’t explain, along with an on-again off-again, hot, buzzing dizziness in my brain that made sometimes made driving difficult.

She gave me a look that could’ve blistered paint. “I think it’s prudent to look for other causes, so a lumbar puncture is still warranted.”

Fast forward again. What was supposed to be a 48 hour lumbar puncture headache requiring no further medical intervention (“I haven’t had to do a blood patch in twenty years,” said the doctor who did the puncture) turned into a seven day revelation of pain. My back hurt like I’d been hit with a hammer. My guts ached so badly I massaged them continuously. My hips, knees, shoulders, and elbows felt like they were being twisted. When I sat up, my head hurt so badly that I would break into a cold sweat. Every time I stumbled into the bathroom, I came close to passing out from pain before I could rush back to the couch again. I had to time my painkiller dosage.

Through it all, my neurologist’s office strung me along with never-answered phone calls. By the time my doctor was finally ready to order the blood patch that would end my pain, I was already five days through it and improving. I didn’t take kindly to being hung out to dry for five days of the worst pain I’ve ever experienced.

Fast forward again. On the way home from my latest quarterly MRI for my oncology team, I got a call from a scheduler. “Okay, the earliest I can get you in is tomorrow.”

“Get me in for what?” I replied.

“Oh, did no one call you? The neurologist says your results are too complex to get into over the phone.”

I had my answer without being told what it was.

I was seething by the time I sat across from my neurologist. At this point I’d been disregarded for two years, forced through so many MRIs that even radiology techs winced, and left hanging for five days in blinding pain. And yet my neurologist managed to look affronted when I had no reaction whatsoever to being told I have MS.

The numbers are high enough to imply that I’ve had it for years…certainly for far longer than I’ve had cancer. As it turns out, the MS probably saved my life by making my legs go numb. I certainly had no symptoms from the OM.

Visibly miffed by my lack of reaction to the news, my neurologist told me, “Given your cancer, I think a second opinion is warranted. I’m referring you to a neurologist at UVA.”

I replied, “I just made an appointment with the neurology clinic there. It’s lined up for December.”

She snapped angrily, “I’m your neurologist.”

“This is all brand new,” I replied. “My oncology care will be reverting from Philadelphia to UVA soon. I knew it would take weeks to get the files and imaging transferred, and I want to have all my care finally handled in one facility, so I got the ball rolling as soon as I could.”

She snarled at me, “I should’ve been kept in the loop on this.”

I replied as coldly as I could, “We seem to have communication issues.”

She escorted me out of the examination room, ordered her assistant to make the arrangements with UVA, and stormed away without saying a word to me. She cost me years of contrast damage to my kidneys, years of claustrophobia, years of uncertainty. She might even have cost me years of preventive treatment, if there is such a thing as a preventive treatment for MS that doesn’t involve immunosuppression. (I don’t know yet. I’ll have to hear from a competent neurologist first.) And she didn’t even have the decency to say goodbye, let alone “I’m sorry.”

From this point forward, it’s going to be bloody difficult not to treat my medical care team as if I had my husband’s t-shirt on: “To save time, let’s assume I’m never wrong.” I want everyone around me to shut up, quit wasting my time, and let me get my job done as quickly and accurately as possible, so that poor patient can get the needles out of her and go back to her life. That poor patient is me.

 

The Five Recollections

I’ve read a fair bit about Buddhism, but this is the first time I’ve stumbled across these teachings summed up in quite this way. The Five Recollections are kinda youchie. But saying it out loud three times provides a surprise in the heart:

I am of the nature to grow old; there is no way to escape growing old.

I am of the nature to have ill health; there is no way to escape having ill health.

I am of the nature to die; there is no way to escape death.

All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.

My deeds are my closest companions. I am the beneficiary of my deeds. My deeds are the ground on which I stand.