The couches weren’t exactly like this. Photo: Serife Gerenschier.
As I sped toward Capitol Hill in a taxi yesterday, I thought, “Do I really live here? Is this my life?” Such thoughts have come to me before, even when I have been in the same place for a long time, but changes have happened so quickly lately and the reversals have been so swift, I had whiplash in a smooth cab ride.
Speaking of upheaval, today I saw something I had never seen before: a fresh eviction. I was on U Street, headed for groceries, and I suspect if I had been just ten minutes earlier, I might’ve seen actual furniture being thrown out the actual window or pushed through an actual door.
Furniture was all over the sidewalk as I walked up. There was commotion. Couches, tables, a TV set, splintered wood, a few sagging boxes of cords and things, all pushed up to the curb and only saved from falling into the street by the parked cars there. Two young men of about twenty-five in hoodies and baggy pants were nervously laughing too loud, punching each other and whooping, clearly trying to make what was a big, fat, hairy mess, look like a hilarious moment in an otherwise unremarkable day. Their strategy was not working. This was a big, fat, hairy mess for these guys and the whole neighborhood/world could see it, right there on U and 14th.
As they passed, people either stepped around the situation or stopped to more closely examine it. I was one of the former, choosing to cross the street when I heard another woman near me exclaim, in a chastising, it-takes-a-village kind of tone, “I guess y’all been evicted.” Until she said that, I was unsure of what I was looking at. The woman gave the boys a wide berth, too. But other people were more brave than the two of us. A man and a woman who walked out of the Chinese restaurant nearby examined a table, inspecting it for possible rescue, I guess. Several indigent-looking folks had descended and were picking this and that, giving looks of “What are you gonna do about it?” as the boys cavorted nearby, presumably in shock.
My ex-husband’s family owned rental properties in Chicago and I learned a thing or two (really, like one thing or two things) about the landlord-tenant relationship. Though my sources were biased, it did appear that the tenant has a slight edge over the landlord in the relationship’s balance of power. Once a lease is signed — at least in Chicago — a tenant is entitled to some rights that favor his or her situation (needing a place to live) over the landlord’s situation (owning an apartment.) Over the six or so years I was with my ex-husband, I heard of a few instances where an eviction needed to take place but couldn’t because of this or that red tape; I understood that the cost of evicting someone was often higher than just giving them a free month’s rent and threatening them with police force if they didn’t get out by a certain date. This usually did the trick and involved far less paperwork for everyone.
So the boys today, they must’ve screwed up pretty bad. There’s a big homelessness problem in DC. I see bums everywhere, especially around Union Station, the nearest train stop for me. I stepped around a plastic garbage can on the curb and thought that this might be just how it starts, an eviction at the end of December; for many, it’s just a domino somewhere in the middle of the chain.
I went on a walk through Capitol Hill this morning and at the base of the front steps of the Capitol Building, I wept.
It’s fair to say that the widespread use of irony has flattened huge tracts of human experience in our culture. What I mean by that is that we say stuff all the time in an ironic way (e.g., “C’mon, I love fruitcake,” or “A rainstorm is exactly what I hoped would happen on game day,” or “Nothing like a pleasant stroll through Times Square on New Year’s Eve!”) and for the most part, we all recognize that irony (at least our American version of it) is happening. Art does this, too: Jeff Koons, though I really like his stuff, is totally ironic (e.g., a sculpture depicts the Pink Panther hugging a busty blonde; there’s a series of photographs where Koons is engaged in explicit sex with his wife, but it’s all styled in romance novel memes.) But one of the results of this style of communication is that it’s risky to have a genuinely sincere moment of vulnerability or sensitivity.
For example, when I say I wept at the steps of the Capitol, it would be easy to be like, “Yikes, that is really cheesy, Fons”; it would be easy to cringe a little because being touched by architectural beauty and the grand symbols of our democracy has so been done before.
Yo, irony: suck an egg. I was a grateful, wobbly, sincerely weeping American this morning and it felt fantastic. Not indulgent. Not grody. Just honest.
And as I stood there and gazed up at the dome and cast my eyes all around at the fountains and the sculpture, at the wide open space of Washington, D.C., I knew that later today, there would be crowds of protesters, exercising their right to protest. I loved that the grand space was so open; there are no gates to the Capitol, just sidewalks that lead right up to the door. I felt good to be a taxpayer and that definitely does not happen often. (“I love paying quarterly taxes, don’t you??)
Leaving New York was hard. The breakup was harder. But one has to trust oneself. I’m so much happier here it’s almost shocking. There are wide-open spaces, there is clean air, there are trains where you can find a (clean) seat.
WWII propaganda poster by Fougasse; ironic appropriation by me.
“Why’s it called ‘PaperGirl,’ grandma?”
“Sit on my knee, child, and I’ll tell you.”
“Can I have a another cooky first? You tell long stories.”
“Here. Anything else?”
“No.”
“Good. Okay, then, PaperGirl. Well, once upon a time, long ago, I wrote a poem.”
“What was it called?”
“I’m getting to it. It was called ‘The Paper Poem,’ and it was an extended metaphor about the nature of existence being fragile like paper, but beautiful, too, like paper is beautiful.”
“What’s paper?”
“Before your time.”
“Oh. Your poem sounds cool, grandma.”
“I liked it. Other people liked it, too, and I performed it in many places all over the country.”
“Like in Bismark?”
“No, never actually in Bismark, I don’t think. Maybe. It was a long time ago. Anyway, there’s a verse where I say ‘I will be your paper girl,’ and that’s where ‘PaperGirl’ comes from.”
“What’s the verse?”
“You want to hear the whole verse?”
“Is it long?”
“No, it’s not long. It’s the second-to-last verse of the poem and it goes like this:
But if you are a paper doll, too, then I shall know you on sight,
And if you are with me, come with me tonight; I will match up our bodies
by the tears in our arms —
We will form paper barricades against matchstick harm;
I will make paper love to you for as long as I can in this shreddable world;
I will be your paper girl.
“That’s nice, grandma.”
“Thanks.”
“And you named your blog that because of that poem?”
“Yes. And PaperGirl is the name of my LLC, too. And that small island I bought. And the Beaux Arts building you like so much in Paris. And my foundation in Dubai and all the vineyards in Spain. Everything in my empire, it’s all under the PaperGirl umbrella.”
“I wanna go to the zoo and see a rhinoceros.”
“Get your coat.”
[NOTE: I’ve been asked lately why the blog is called what it is, so it seemed fair to offer this again, an entry originally posted on this date.]
The only thing harder than defining “existential crisis” is doing it in Pictionary.
Define “reality.” Define “said.” Define “jump.” So hard, right?
Defining object nouns is easier. “Mozzarella” isn’t too bad; “Denmark” is doable. But the verbs and the gerunds and past participles are crazy-making. By the way, one of the five definitions of “jump” is “to push oneself off a surface and into the air by using the muscles in one’s legs and feet.” The definition of “said” as an adjective is “used in legal language or humorously to refer to someone or something already mentioned or named.”
Definitions are so hard to do (for me, anyway) that looking them up for even common words is one of my favorite activities. And now, I present to you definitions that are shaping my life these days, each edited for length. All definitions from the New Oxford American Dictionary, except where noted.
peripatetic (adj.): traveling from place to place, esp. working or based in various places for relatively short periods
breakup (n): an end to a relationship, typically a marriage
moving (adj.): relating to the process of changing one’s residence
existential (adj): of or relating to existence
crisis (n): a time when a difficult or important decision must be made
work (n): activity involving mental or physical effort done in order to achieve a purpose or result; mental or physical activity as a means of earning income; employment
yo (exclam.): a slang way of saying hello, usually friendly and casual [Urban Dictionary]
hustler (n.): an aggressively enterprising person; a go-getter
Also, the taxi vouchers should look like this. WWII British Army Forces Voucher. Photo: Wikipedia
Six days to D.C. I am counting hours.
Speeding along in a taxi to the airport this morning, I watched the meter. I wasn’t expecting a surprise; the glowing, upticking numbers just caught my eye. A taxi from the Lower East Side to La Guardia is about $34 + tip, sometimes more with tolls unless you take the Williamsburg Bridge, which is my preference. I take taxis to airports a lot and this morning, I had an idea:
I think airlines should offer taxi vouchers to frequent fliers.
I am well aware this is a service-oriented idea in a service-oriented culture and this idea is small ball. Peter Thiel’s new book, Zero To One, encourages us all to chart new territory in the world and not repeat what’s been done before.** Taxi vouchers from airlines hasn’t been done before but there are a lot of vouchers in the world. I have not created a hoverboard. I have not invented a safe and effective method of giving humans tails, which I think would be fantastic.
But I am putting a number of Southwest Airlines’ children through college at this point and though it’s a nice gesture, drink tickets aren’t my idea of a real perk. The only way to make Jack Daniels worse is when you’re drinking Jack Daniels mixed with Diet Coke at 35,000 feet. I like being in the VIP line a lot, but every time I go to or from the airport, I’m in a taxicab. Wouldn’t a voucher be great for some or part of the trip? Totally.
With apps and Uber and the service-oriented economy, surely this is possible. We put a man on the moon and Lady Gaga is going to sing in space in 2015! There are cats on the Internet who sing in chorus. I have every faith in humanity that this idea can be a reality.
I will wait with anticipation to get a taxi voucher from an airline and I will relish separating the check from the attendant thank-you letter. You know what I mean? When you tear a check or a voucher along that perforation line? God, I love that.
**I highly recommend reading Thiel’s book. Thiel was the founder of PayPal and one of the first investors in Facebook. It’s a game-changer and I’ll be giving everyone a copy for Christmas along with candy of some kind or other.
You can see Robert James Waller’s face in the side of this covered bridge if the light’s just right.
“When in the course of human events it becomes necessary for people who care about each other to terminate the living situation which has connected them with another and to assume among the powers of real estate, the separate and hopefully equal apartments to which the Leases and Landlords and/or Management Companies grant them, a decent respect to the considerations of mankind suggests that they should declare the options before them as to where exactly in Sam Hill they plan to go.”
Of course, I can only speak for myself. Here are facts:
1. Yuri and I have agreed that living together is not what we should do right now.
2. My condo in Chicago is unavailable, as I have tenants in the unit through mid-June.
3. I do not wish to stay in New York.
Fact One on its own is manageable enough: find separate apartments. Unfortunately, Fact Three renders this possibility D.O.A. I don’t want to find another apartment in New York, especially one that I would be able to afford on my own. Sharing a one-bedroom is great in this city (or any other) because two can afford something together that one couldn’t possibly swing. I did the research. The furnished apartments I found that were within my budget made me extremely depressed. Did I look in every nook and cranny of the city? Did I look in Queens? No, I didn’t, because I don’t want to live in Queens. No offense to Queens, I just don’t want to live there.
All right, then just go back to Chicago. A fine idea, but for Fact Two. Sure, I could tempt my adorable med students with a free month’s rent and some cash to vacate early — everyone has their price and second-year med students are probably happy to let you know what that number might be — but I don’t like this plan. It’s disruptive to them and it would be painful for me. My relationship has failed and my move to New York has failed. Returning to Chicago before the one-year-gone anniversary would be too painful. I picture myself with a little hobo stick, riding into town on a broken-down palomino.
I could get a little apartment in Chicago and wait out my tenants till June, but that would maybe be more depressing. “I can see my house from here!” I’d cry, holding my hobo stick.
So no New York, no Chicago till June. Six months. Six months to go. Over these painful weeks, I have been weighing options and crunching numbers and going over and back over what my best course of action is, here. And now:
Option No. 1: Mom’s House — Winterset, Iowa
Winterset is my hometown. I was born there. My sisters were born there. I know all the bank tellers and the bank tellers’ kids. Lots of people move back home. A large number of people never leave in the first place.
There are many upsides to Option No. 1., including but not limited to; cost of living (essentially nil), being able to hang out with Mom and Mark a lot, a big kitchen, access to cars, Des Moines is a short 35 minutes away and Des Moines is alright, I would get to be with Scrabble (Mom’s dog who I love), I could say hi to the bank tellers, their kids, etc.
Downsides? Numerous. There is no public transportation system to use, so I have to drive everywhere and I don’t particularly like driving in Iowa on account of all the deer. Add to that that I love my mom and stepdad so much but six months is a heckuva long time. I’m more worried they’d get annoyed with me than the other way around. Besides, all those bank tellers remember watching my car die in the Homecoming parade. Turns out you can go home again, but do you want to?
The main problem with Winterset is that I need to save it. See, if I’m going to be at Mom’s house for six whole months, I want to be suffering from a bonafide nervous breakdown. I want to save the “I’m Going Home For Awhile” card for full-on crazy. I want people to ask my mom, “Did I see Mary at the grocery store the other day?” so Mom can go, “Oh, yes. Mary’s… Mary’s home for a little while.” Then the person will say, “Oh, is she okay?” and Mom will say something like, “I think Mary just needs a little…rest.” And I’ll be at home on the couch watching 19 Kids and Counting in the fetal position, combing my hair with a fork. It sounds amazing. I don’t want to blow that opportunity now, when I feel sad but otherwise totally functional.
So Iowa is out. Tomorrow, the next sensible option explored.
Josephine Bonaparte Mixed Media Sculpture by George S. Stuart. Photo: Peter D’Aprix for the Historical Figure Foundation.
At dinner last night with a number of F+W Mediennes etMediassieurs, I spied one of my favorite people in the group and began to flap my hands and wave my arms at her. I looked like I was having some kind of episode, but I wanted to get Aly’s attention so that she would come sit by me. I was not having lunch at a junior high cafeteria, I realize, but I never get to see this girl for more than five minutes at a time and I wanted to visit with her. This was my chance.
Aly works with the Original Sewing and Quilt Expo (an arm of F+W) and I’m certain her title has the word “coordinator” or “manager” in it, but I think of Aly as a producer. Because producers make things go. Producers solve small problems before they become big problems. Producers are the people you never want to get sideways with because they will save your hienie. (Aly’s saved mine a few times.) Whether they are producing a film, a stage show, or a quilt extravaganza, no good production ever happened without someone like Aly involved. It’s also worth noting that she is a kind of protege of Marlene.
So I asked Aly, “How’s life?” and she had lots of interesting and intelligent things to share, of course. Aly is twenty-five. If you remember anything about being twenty-five, you will recall that it is not an easy age to be. Whether you’re settling down or just gearing up to not, the world is big and choices seem to have either Godzilla-level impact or be so inconsequential to the rest of humanity that you feel like a bat in an echo chamber full of bats. Drunk bats. Drunk bats in an echo chamber with Facebook. Drunk bats in an echo chamber with Facebook and the latest iPhone. It’s hard, is what I’m saying.
“Mary,” Aly said over cheesecake, “If you could give your twenty-five-year-old self advice, what would you tell her?”
This is why Aly is going to be just fine. That’s a great question. I thought it about it for a moment because I took the question very seriously, but I knew the answer right away.
“I would trust myself more,” I said. “I made a lot of decisions at twenty-five that were based on a fundamental belief that pretty much everyone but me knew what was good for me. I thought I had to listen to them. I thought I had to fix myself. But I’m not broken. I’m not a failed human who has to use life as one, long fixer-upper. My instincts are good. I’m smart. There’s no one on the planet just like me, so hang the blueprints. Be original.”
Aly nodded, and I think she was satisfied with that. But I forgot to tell her something really important, a sidenote to the sentiment above:
“The marvelous thing about accepting your own originality is that you get to avoid the pain of living other people’s perceptions of how you should be. This is beautiful. But you still have a lot of work cut out for you, because you have to defend yourself your entire life. You’ll have to defend your path, your way, your schtick, your ‘thing’ the whole time. People like blueprints. A lot. You don’t use one, you get freedom — but it ain’t free.”
Aly, the picture up top is a figurine of Josephine Bonaparte, Napoleon’s first wife. I put “quarter life” (as in “quarter-life crisis”) into WikiCommons and I got all these pictures of historical figurines by one George S. Stuart. You see, the artist makes “quarter life-size” sculptures. Get it? I thought this one was a good one for you. Josephine was a badass.
Mine was like this. I still get hives thinking about it.
In a dress shop in Anacortes, WA last week, I overheard the salesgirl say, “Oh! It’s about to start!” It was Homecoming Week and the parade was due to begin near the shop and make its way through town.
We all spilled out onto the sidewalk to watch the classic, small(ish) town America homecoming parade, all banners and bass drums, streamers and tossed candy. I felt terrible for the pretty girls in the homecoming court, freezing to death in their formal gowns. Much better to be a band geek in the Northwest in September, if only for the opportunity to wear pants this time of year.
Seeing the hometown parade reminded me of a story. You will laugh. But it will be at my expense. That’s okay. I can take it.
I was a junior in high school. I had my first car: a VW Bug from the late 60s, I believe. Somewhere in my life, I had seen one of these cars and had decided it was the only car for me. This was before Volkswagen came out with the new Beetles, mind you. This was 1996 and there was only one kind of Beetle available at the time: an old one.
We found a red Bug advertised in a nearby town. We negotiated to a good price, and with some help from Mom, I got my dream car. It’s still a point of pride that I learned how to drive a stick shift in a vintage VW bug with transmission issues. After that, I can drive anything. The car was procured just before school started, so I was busy that summer cleaning it, getting things fixed, etc. I even got a homecoming date out of the deal. The family that sold us the car, there was a cute son about my age. I forget his name, but he was blonde and seemed cool and he was from another town, which was like, super-duper cool. I asked him if he’d be my date to homecoming and he said yes! I felt on top of the world.
In small town Iowa, the windows of the shops in the town square get painted with murals of rival death and home team victory and you can get prize money for painting the best window. It’s a really a big deal. We also paint our cars for the homecoming parade. Basically, there’s a lot of painting stuff; also, toilet paper is on everything. That year, it was obvious to my friends and me that we had to paint my awesome VW Bug and win first place. My bestie, Leia, is an incredible artist and she painted this slobbering, ferocious-looking husky (go Huskies!!) on the front hood that put all the other painted Ford Escorts and Geo Metros to shame.
Indeed, we won 1st place. Which meant we got $50 bucks — and more importantly, we were to be featured in the big parade.
Parade Day came. The sun was hot. The crowds were thick. Leia, our other bestie Annie, and my crush — not my homecoming date but the guy I really, really liked from jazz choir — and I were in the car. We lined up for the parade. The parade began. And my car began to break.
It kept stalling. It wasn’t me. I was driving that car as well as I knew how and okay, maybe there was a trick to it, or a “sweet spot” I hadn’t yet found, but the car refused to cooperate. The engine would engage, we’d go a half a block, and then “cha-CHUNG-CHUNG-CHACK.” Dead. Stop. Stall. Over and over. Smoke began to come from somewhere underneath the car. Everyone was sweating, but I was truly losing my nerves, silently, horribly. It was funny at first. Then it was hell. We were a clown car. We were a rolling, stalling, smoking clown car with a dog painted on the hood. I’m amazed my friends did not open the doors and run away before anyone recognized them. Their loyalty is touching.
It goes without saying that any chance I had that day of landing a smooch with my crush was as likely as my Bug suddenly growing a V6 engine and a GPS. It was so over. I looked like such a loser. I somehow maneuvered my car off the parade route and into a parking spot. I do think my friends (and certainly my crush) took off at that point. The car had died in a major way that day and the repairs it proved to need far exceeded my budget. We sold it not long after and I got a Honda CR-X that actually moved people from Point A to Point B without making me want to crawl into a large hole in the ground and never, ever come out.
The homecoming date with the guy who sold me the lemon was — wait for it — a little sour, too, but it could’ve been so sweet! He turned out to be very shy and I didn’t want to be too bold, so I didn’t tell him he could’ve kissed me. He sorta tried when he dropped me off at the end of the night, but then he sorta balked and I balked, and it just didn’t happen. He didn’t even know about the parade!
Sometimes, when people ask me for my autograph or stop me at a big quilt show and want a picture, I am amazed. I have, and always will be, a huge nerd with smoke coming out of my car. Always.
It sound a bit cute, but it’s true: I’ve got Restless Life Syndrome.
As a youth, I was not particularly wiggly. I seem to remember sitting quietly and being good. I was definitely not bad. My mom says I was a happy baby, an easy one. I don’t know when it happened, but at some point I stopped being satisfied. I have been on the move ever since. Dammit!
From time to time, I read articles in magazines about some sad, harried woman’s magical transformation into a content, happy woman who stops working 24/7 and starts appreciating the beauty of the hummingbirds in her garden — the garden she now tends lovingly instead of stabbing at spreadsheets all day. One wonders if her perfect azaleas are stand-ins for her then-perfect quarterly reports, but to hear her talk she’s truly mellowed, is truly at peace because she stopped worrying about absolutely everything she used to worry about. She just “woke up.”
These articles do not inspire me. They make me nervous. Because I am not looking at hummingbirds. I am on a plane. I am trying to do something, here.
I don’t know what it feels like to check out. I can’t do it. I’ve tried. The people who do the hummingbird thing are mysterious to me. I do try hard to notice the world, but there can be no doubt I’m missing tracts of it right and left because I’m getting into another taxi in another city or making wheat-free bread that will supposedly save my health and so far is absolutely not doing that. My days are spent working; many nights too, because I feel workiness is next to worthiness (also because I’m lame in social situations involving more than two people.) To be fair, “working” to me means “making money to live on” but also “quilting” and “writing,” so no need to feel sorry for me. Besides, I make money doing (mostly) what I love to do. I’m grateful every day for that and will work hard to keep it that way.
Which brings me to the hummingbirds. I don’t think I’m “set.” I don’t take all this for granted. You want something big, you gotta do big things. You gotta hustle. There may not be as many diaphanous gowns in your life — or as many gardens — but there is beauty in the airplane. Beauty in the leather jacket you’ve got on.
Harvesting grapes, from a book created in the 14th century. These people have never heard of a pumpkin spice latte.
Q: What do autumn and a New York City fashion model have in common?
A: They real chilly.
Today feels like fall has arrived and also like my first day in one place in about a month; this is probably because fall has arrived and it is my first day in one place in about a month. My September saw Georgia, Iowa, South Carolina, and Florida; if you count the layovers, throw in Michigan and Tennessee, too.
My friend Bari said something the other day that made me laugh out loud. She said, “Your life seems kind of glamorous, Mar, jetting off here and there.” But glamour has something to do with someone carrying your luggage, I think, and cooking (or at least fetching) your food. As it happens, I am very much in charge of my own suitcase(es) and am the only person making myself almond meal cookies and broiled fish. But perception is everything and I love the idea that while I’m hauling my quilt-laden suitcase around the country, someone out there thinks I’m special enough to have “people” to do it for me.
Of course, the month contained disaster, too. “The Atlanta Incident,” as we might call it, didn’t just bring me low physically; it shook my confidence down, too. I don’t much like looking into the future and seeing it obscured by shadowy shapes of emergency rooms in faraway towns; I don’t like seeing blood in places it ought not to be (and I’ll let you figure that one out on your own.) Should I have cancelled September and come home? Should I have cancelled even my New York Adventure and gone home home, to Chicago, in the name of equilibrium? As my condo is presently rented, that would be difficult. No, stopping everything would be far more disruptive than just continuing; besides, my Midwestern work ethic is as stubborn as the cows so it’s no use to tell me to call in sick unless I’m half dead. Which is always possible.
I’m off to the Seattle area next week to lecture with Mom, then it’s back to Florida again. Yuri is peeved that I’m leaving again so soon, but I keep telling him that these trips are planned at least a year in advance, in most cases, and that there’s very little I can do. When I come back, I will commence the tests that my Chicago doctor recommended I have and Yuri will hold my hand through those. The only thing good about hospital tests is that I have to actually be in town for them.
Today it rained and the ground was soaked; In autumn, chill and sky are yoked And fall complaints of average kind: Ailing body, troubled mind.
In NYC a few weeks back, I set about getting myself a Known Traveler Number.
A Known Traveler Number (KTN) is a number assigned to you if you have filled out a bunch of forms and passed identification tests set up by the National Security Administration. You have to be a felon-free citizen. You give your fingerprints. Your passport gets triple-checked and you pay eighty-five dollars and if you do all this and look okay to the gov’ment, you get your special number, which tells the NSA you’ve been pre-screened and can now keep your shoes on in airport security lines (a benefit worth far more than eighty-five dollars, in my view.) There’s a special “TSA PreCheck” lane reserved for people with KTNs and this is also desirable. For months and months I found myself in crummy, regular security lines, looking at the people whizzing through the TSA PreCheck lane, twisted up with envy and self-chastisement. Why, why had I not gotten on the TSA PreCheck train? When would I just march myself to one of the places where they do it and just do it??
I procrastinated because I feared a DOT-like experience — and I was in New York City! Images of day-long waits and bus station-like environs kept pushing the errand to the bottom of my list. As It turned out, the process was painless and quick and as of today, I have a Known Traveler Number! I feel that life can truly begin. Kids, get your shoes on! We’re goin’ to the Sizzler!
In celebration of this momentous occasion, a flashback post. Some PaperGirl readers will remember the story of Gracie, Hell on Flight #3282; I hope you can bear reliving her, Grandpa, and the rest of the family. For those of you newer to the blog, I think you’ll like this one. I suffered for your pleasure.
Click here to read about a special flight and the darling, enchanting…Gracie.
Sleeping with mom’s dog, Scrabble. She’s good in a pinch.
1.
I miss Yuri.
Our New York City days have been so good. When he comes in the door in the evening, I leap up and run to him. I always like to look pretty when he arrives. Dinner will be almost ready or I’ll have been baking cinnamon rolls, his new favorite treat. He calls them “cinni-minis.” I jotted down the recipe and taped it to the cabinet above the stove and it says, “Yuri’s Cinni-Mini’s” and there are hearts and frosting smears all over the paper.
We have a mouse in the apartment. Naturally, we named him Mickey. Neither of us are really okay with Mickey being there but neither one of us wants to buy a trap. Maybe if Mickey started paying rent we could get comfortable with him running past on the parquet floor every once in awhile, at night, when I’m reading and Yuri is finishing up work for the day.
2.
All this rigmarole. The fears. Atlanta. Taping the TV show. New medicine that has freaking nitroglycerine in it. I made an appointment with my surgeon in Chicago because she has operated on me a lot. New York is full of smart doctors but I think it’s wise at this juncture to speak to the lady who has had her hands in my abdomen on three separate occasions.
The worst case scenario is that I was misdiagnosed in 2008 and I actually have Crohn’s disease. (That would mean an already colon-less me would begin small-intestine re-sectionings.) The best case scenario is that I am how I am now, which appears problematic.
3.
Last night, I let my mom’s dog Scrabble sleep with me in the bed. I’m mostly against animals in my bed (unless you take me to dinner first — hey-o!) but Scrabble is squeaky clean and very soft, with short, white curly fur. She looks and feels like a lamb. Scrabble is a miniature Golden Doodle and she can shake, roll over, and fetch three different toys by name, but she still jumps up on people when she sees them because she is so excited to have friends.
When she was a puppy, I would lay her on her back and give her a puppy massage. She was very hyperactive, being a happy puppy, but I would flip her on her back and use my fingers to do a puppy version of a deep tissue massage and she would just totally conk out. She loved it. It got so I would say, “Scrabble? You wan’na puppy massage?” and she would get this look like, “Is this seriously going to happen right now?” And I’d massage her little chicken wings and that’s how I fell in love with her, down on the floor of the living room, smiling at her happy puppy face, burying my face in her fur.
A still from television’s Little House on the Prairie. Kids these days!
Happy Labor Day.
The U.S. Department of Labor tells us that in 1887, there were five forward-thinking states that voted to observe a newfangled thing called “Labor Day.” Among those five states: New York. Perhaps that’s why everyone has been so crazy in the city this weekend; I’m sure everyone living here knows New York was an early adopter of Labor Day and the knowledge has made them drunk on power. And alcohol.
Before I get to the story about nearly stepping on two kids making out in my apartment building last night, a terrific quote from one Mr. Peter J. McGuire, general secretary of the Brotherhood of Carpenters and Joiners back in the early 1880s. McGuire was a cofounder of the American Federation of Labor and he is credited by many as being the first to suggest there oughtta be a day to honor those “who from rude nature have delved and carved all the grandeur we behold.”
I think that’s pretty well-said, don’t you? “Who from rude nature” and “delved and carved” are downright snazzy, son. And he’s right, too: We do behold grandeur, all over the place, all the time. If you don’t see it, you should clean your glasses.
Now, about stepping on these kids.
Several of Yuri’s friends were in New York to attend the U.S. Open and we went out with them last night. It was very, very difficult for me to wrench myself away from my sewing machine (I’m working on entering a quilt in QuiltCon this year) but I delved and carved myself into a Roberto Cavalli dress that made me feel like a real kitten and I got into the mood. I checked my diet rulebook and, to my delight, found that tequila is allowed. I had two modest servings of Don Julio on the rocks last night and nothing horrifying occurred. Good news for my guts and my brain, which was starting to feel a little “all work, no play.”
We taxied to a place. We danced. We clinked glasses with friends. We moved to another place. There was revelry. But not surprisingly, I was ready to go home before Yuri was ready. There was no drama in this. We’re reasonable people and we have different thresholds and clocks and such.
“Honey, I think I’m gonna dip!” I shouted over the boots-cats-boots-cats music throbbing through the speakers somewhere deep in the Lower East Side.
“What?” Yuri turned his ear toward me. An extremely enthusiastic Puerto Rican girl who wasn’t an inch over five feet tall careened past us and slammed into a man I hoped was her boyfriend. Splash.
“I’m gonna take off! I’ve had fun! I’m good! You stay out!” Behind me, a hand rested lightly on my waist. I realized it was not Yuri and gave the man behind me a filthy look; he retreated.
Yuri gave me a look of “I don’t want you to leave” but, being a reasonable person who knows me by now, said, “Are you sure?” and when I nodded vigorously, hugged me tight and said, “Okay, baby. Let’s get you a cab.”
When I got home, I had a dickens of a time getting the front gate open. I was at it for 10 minutes and when I finally got in the door, I was elated. It was nearly two in the morning and I was in very high heels. I was so happy, I didn’t mind that I nearly stepped on two youngsters in flagrante on the floor. Right there, on the floor of the building, at the foot of the stairs, laying on top of each other and vigorously making out, was the son of my landlord and a cute little blond gal.
“Oh! Uh, sorry,” I said, and waited for them to sort of roll out of my way. I needed to go up the stairs.
“No, we’re sorry,” said the young man, and kind of smooshed his way over to the side. I can’t verify it, but I’m guessing they had been drinking. An iPhone fell out of the girl’s pocket and I barely missed stepping on that. I’m telling you, they were lying on the floor! The landlord’s kid! And some girl who looked like she just had her sweet sixteen! A Labor Day scandal!
“Watch your phone, there,” I said, and I couldn’t help but smile as I made my way up the stairs. I thought about those kids — they were maybe college freshman-age? younger? — and how different their lives are from mine. I mean, this apartment building is really pretty amazing and the young guy, his dad owns it. In New York City. It’s huge. It’s pre-war. It’s a stunning place, with art all over the walls and vaulted ceilings. No wonder the landlord’s kid can nab the cute blondes, you know? He’s got game. My make-out sessions in high school (which totaled about four, by the way) took place in cars or cornfields. Same planet — but you know what they say about the worlds.
Enjoy your four-day work week, you crazy New Yorkers. And me, and you. Let’s all enjoy the grandeur of the week however many bodies we have to step over as we labor.
That photograph is of First Lady Grace Coolidge with Rebecca, her pet raccoon. My younger sister’s name is Rebecca. Though there are zero Rebeccas in Fons or Graham family history, I am confident my little sister was not named after a White House raccoon. There was no Internet when she was born, for one thing. Did my parents even know about the Coolidge raccoon? Without the Internet, how did they know anything? How did they even know the name Rebecca? The mind reels.*
I don’t know if it shows, but I spend an inordinate amount of my day
1) panicking about the certain-if-not-imminent collapse of America (it’ll be because of the banks)
2) thinking about PaperGirl and its continuity, quality, etc.
3) in search of lost time
That second thing is the most surmountable here, so let’s mount. The goal for me with the ol’ PG is to never let it be about one thing. Life is not about one thing, after all. There’s a lure of making a blog about one thing. A “Mommy” blog can be marketed as such, same as “Foodie” blogs. You can’t blame a person for wanting to have a niche and stick to it. A blog that is about one thing has an easy elevator speech. Let’s listen in on a conversation between a food blogger (“FOOD BLOGGER”) and an advertising executive (“AD EXEC”) in an elevator at a busy blogging convention:
FOOD BLOGGER: (Noticing AD EXEC’s badge.) Oh, hi. You’re an ad exec.
AD EXEC: Yes, I am.
FOOD BLOGGER: (Extends hand.) I’m a blogger. I have over 15,000 page views a month and a bounce rate of 7%. Most people stay on my page for eight minutes at a time.
AD EXEC: Those are great numbers. What’s your blog about?
FOOD BLOGGER: Food.
AD EXEC: Here’s my card.
Let’s listen in on another conversation. We’re at that same blogging convention and two ladies meet each other in a line for coffee:
LADY 1: Boy, am I ready for a latte!
LADY 2: Tell me about it. (Glances at LADY 1’s badge; it says “Blogger.”) What’s your blog called?
LADY 1: (With dreamy look) TheKidsAreAlright-dot-Mom-dot-Blogspot-dot-Com.
LADY 2: I’m a mommy blogger, too! (The women embrace.)
And what’s my blog about? Everything. Nothing at all. I’ve auditioned several replies to the question, but none seem to be winners. (This does not inspire confidence in the concept of the thing.) Attempts to answer “What’s your blog about?” have included:
“It’s a blog about… My… Life?”
Eyes glaze.
“It’s… Well, it’s about all kinds of things.”
Folks suddenly need to check for text messages.
“You know, it’s just sort of a clearinghouse for thoughts. But it’s not just me rambling on about this or that, no way. I try to keep things tight. I have a point of view and I try to…keep things…tight.”
No, no, no. I’ve totally lost them.
Putting a picture up there of Grace with her raccoon, that was me being my own trainer, trying lead my brain away from the trap of consistency. If I write about my diet too much, I’m a “health and wellness” blogger or — far more undesirable to me — a blogger who writes mainly about her chronic health problems. (I recognize the value of such blogs and have no criticism for people who write them, I just don’t want to write a blog like that.) If I write about living in NYC too much, I might alienate all the non-NYC (or non-NYC-loving) readers out there and be labeled an “urban” blogger, which sounds trendy and gross.
I must stay on my toes. While updating readers on the progress of my radical, intestine-rescue diet is appropriate from time to time in the name of consistency, I mustn’t offer daily reports of how it feels to eat hamburger patties for breakfast. (It’s weird but I’m getting used to it.) Though I had doctor’s appointments yesterday and today that I do want to share about at some point, I must vary my dispatches so that PaperGirl is not a long slog through the life and times of a gimpy gal with flagging chutzpah in the face of significant health issues. I have to do the slog; why should you?
So the raccoon. Does that make sense? And if someone wants to take a stab at the question, “What is PaperGirl about?” by all means do so. I need a good answer.
*An Internet search tells me Rebecca of Sunnybrook Farm and the Bible were both around before the Internet, so maybe my folks got the name from one of those places. I should ask my mom.
I have a mission in life: I am going to save my j-pouch.
If you don’t know what a j-pouch is, that’s good, because it means you’ve never been personally introduced. If you do know what a j-pouch (or “ileal-anal” pouch) is, you and I could sit down and talk about a lot, I’ll bet.
Either way, if you’re new around here you might want to read Part I and Part II of my health history timeline because you’ll want some background for tonight’s post. Warning: It’s not a fun tale and I wouldn’t recommend eating while reading, so put down the snacks.
If you don’t have time to go through all that, here’s what you should know:
1) I was/am a gimp** because of Ulcerative Colitis (UC); 2) I was treated for UC but made more gimpy in some ways because of not-so-successful surgeries, each with new and exciting complications; 3) Today I am less gimpy than I was but still a gimp and now have a decision to make: Do I opt for a permanent ostomy bag or continue living with my dubiously successful j-pouch and its attendant woe?
While an ostomy bag isn’t the end of the world — I know firsthand, having had one for a total of three years — it does blow. More than what I’m dealing with now? Hard to say. But I’m not giving up my internal ileal pouch without a fight. I’m going to do whatever it takes to make my ruined gutscape look and feel like a damn prom queen. Think sunshine on a field of daisies. Think kittens frolicking in strawberry patches. Think pretty — the opposite of what I got.
* * *
Back in the 1960’s, a woman named Elaine Gottschall had a young daughter with Ulcerative Colitis.
Elaine and her husband lived in New York City. They went to specialist after specialist and their poor kid went on massive steroids and other drugs only to face surgery, anyway. Then the Gottschalls had a stroke of luck. They met a doctor who stared down the hopeless mother and asked:
“What have you been feeding this child?” None of the 15 docs they tried had asked that one.
“Um, food?” was the answer he got.
The doctor put little Judy on a very strict diet: zero starch, zero sugar, and lots of homemade yogurt. Within ten days, surgery was not a pressing concern. Within a year, Judy was growing like a weed, no longer bleeding, no longer living in the bathroom. The kid was better. No, no: She was a lot better.
Elaine was hoppin’ mad that her little girl had been through so much, how she had narrowly escaped being super sick and having an ostomy for the rest of her life, or, you know, dying. She decided to check out how it was that food could cure digestive maladies — and why she hadn’t known that till it was almost too late.
Elaine went to the library. She read many books. Elaine came of age during the Depression, so she never had the opportunity to go to college. She decided to go. At 47, she went to college to find out more about why the diet helped her kid and how it could help other people, too. She got degrees in biology, nutritional biochemistry, and cellular biology. Then she wrote a book. Then she wrote another book. Twenty years and a zillion testimonials later, Gotschall’s work is still in print and many lives have been saved, many more vastly improved, all through the science of nutrition as it applies to sorry souls who are smote with intestinal disorders.
Look, Elaine Gottschall was just a person. But she helped a lot of people.
Along with some other treatments — and under the care of my physicians — I’ve begun Gottschall’s Specific Carbohydrate Diet (SCD), which is designed to starve out harmful (to me) bacteria in the gut and repopulate it with healthy bacteria. It’s a rebalancing act, a total, very much “natural” intestinal renovation. “Gut remodel” would be an appropriate, if too cute, way to put it.
Above all, it’s a major change. “Lifestyle modification” begins to describe it. I can’t use the wooden spoons I use for Yuri’s food because of cross-contamination. “Puree” is a word I have to get comfortable with for awhile. I have to eat an insanely limited number of foods the first phase of the thing, though after the first period I can start to branch out. If I thought about how I can never have chocolate again, ever, I would give up this second.
Maybe not, though.
Because it’s funny how any food becomes far less delicious-looking when it makes you cry a couple hours after you eat it.
Ninety days. Then we’ll see.
**Yeah, I can say “gimp.” We can call ourselves that, but if you’re not a gimp, you can’t call us that.
Belli. Our version is rounder and in my mind, far cuter. (It’s different when they’re yours.) Little Cat Puppet by Folkmanis.
I am a (very) grown woman. I own several puppets — and zero shame.
You can attribute my puppet-owning to the four years I spent studying theatre in college or the nine I spent making it in Chicago. When I was a straight-up stage actress there was a dearth of puppets in my life and I didn’t even realize what a bummer that was. When I made the exhilarating break to be a performer rather than an actor — the difference between “firefly” and “fire” — the number of puppets in my life grew exponentially and I was a happier artist. It wasn’t that I was using puppets right away, it’s that I saw them more in the art I was exposing myself to; intricate, enormous, wild, complex, frightening, and fascinating puppetry seemed to be everywhere in Chicago. When I became a Neo-Futurist, the aesthetic wormed it’s way into my work — or maybe I just came home to the first version of me I remember, maybe I found my inner Sesame Street. I put googly eyes on mittens and stuck them on sticks and did a little play called “Mitten Time.” I put a bird on a wire. I made talking boxes that flew up into the grid on a string. I strung my retired brassieres on dowel rods and sang them to their death in a little play called “Bras I Have Known.” Searching my laptop tonight, I found the lyrics to “Bras I Have Known.” Why not put them down? It’s a simple cut-and-paste and then I’ll (quickly) tell you about Belli.
This was sung (in chorus) to the tune of “Baa-Baa Black Sheep” as the actual brassieres from my life were strung up on sticks and bobbed around onstage. Shocking? Nope. Great fun.
Bra bra old bra
Opposite of young
Lace torn, cups stretched
Underwire sprung
Purple ones, gold ones
Yellow, white, and pink
Cotton, lycra, spandex,
Time to say goodbye, I think
A fine job you’ve done here
To lift and separate
Rest dear, rest dear,
The garbage is your fate
Each bra before you
Tells a story of its own
That one was there the night
Sin came free on loan
This one was present
When Jeremiah died
That one I never wore
But trust me, I tried
The gold one was funny
Never looked quite right
But I wore it frequently
Cause I thought one day it might
I couldn’t toss these out without
Offering them some art
Sure, they’re just old bras but
They literally crossed my heart.
Thus ends the lesson
And your straps on my body
Time to go pick up a new
Thirty-four D.
Good times.
A month or so ago, I popped into the toy shop on 9th Street, about a block from where we turn in our laundry. The shop is called Dinosaur Hill, and if I wanted to have a baby before I walked past the windows of Dinosaur Hill Toystore, boy, do I want one now. Little painted wooden figurines, toy trains, princess costumes. They’ve got everything. They carry many hand puppets, too: I learned this when I went inside, a (very) grown woman with no child who was determined to buy a toy anyway.
I spied a kitten puppet. She was so cute. A little small for my hand, maybe, but soft and so realistic, with wide eyes and soft paws. I surprised Yuri with it when he came home that night. We sat on the couch and I whispered, “I have a surprise for you.”
“Oh?” he said, smiling. “What is your surprise?”
Ping!
The little cat had been on my hand the whole time and I pinged it up and waved a paw by moving my pinky finger inside the puppet. Yuri laughed, delighted.
“Hello! Oh, my! And what’s your name, little kitten?”
I hadn’t decided. Yuri said her name should be “Belly” but when he said it, he didn’t think how “belly” is a tough word for me to process as cute, what with my own belly being such a battleground. Funny thing is that I didn’t for a moment think he meant “belly” with a “y.” I figured he was being brilliant and going for something Italian, so in my mind, I instantly saw “Belli” as the kitten’s name. And so it was that the little cat puppet was named Belli and she has brought us great joy since that day.
I made chicken with creamy pan sauce. I made a pumpkin pie. I made a batch of cookys for Yuri, (this time with white chocolate chips, regular chocolate chips, and pecans.) Right now, there are sweet potato fries in the oven seasoned with curry, cumin, and salt n’ pepper (plus some finely diced red onion) and this morning, there was a cheesy omelette for the man.
All the while, I thought of East of Eden, by John Steinbeck. I’m reading it. And if you have ever read it — or ever read any genius work of fiction, I mean really the cream of the genius crop — you know what I mean when I say I’m only half in my world. The other half of me in the Salinas Valley around the turn of the last century.
Have you read this book? Have you ever? You must. Do not delay. Put aside any non-crucial tasks for the next week and take up East of Eden. I can’t see how this novel could not enrich a person’s life.
Look at this:
“Tom, the third son, was most like his father. He was born in fury and he lived in lightning. Tom came headling into life. He was a giant in joy and enthusiasms. He didn’t discover the world and it’s people, he created them. When he read his father’s books, he was the first. He lived in a world shining and fresh and as uninspected as Eden on the sixth day. His mind plunged like a colt in a happy pasture, and when later the world put up fences he plunged against the wire, and when the final stockade surrounded him, he plunged right through it and out. And as he was capable of giant joy, so did he harbor huge sorrow, so that when his dog died the world ended.”
When I read that particular paragraph, my mouth popped open. I had to go read it to Yuri. “His mind plunged like a colt in a happy pasture,” I read, and the words landed in him as they had in me. “Woah,” said Yuri.
“Yeah,” I said.
The character of Cathy Ames is so terrifying, so cruel, that I am afraid of her. Afraid of a fictional character in a book! And the Trask brothers’ complex, violent, loving relationship make them more real than some people you’ve met in real life. I’ve hardly begun to learn about the Hamilton family, but it’s the Trasks and the Hamiltons who are at the core of this epic.
It’s all a juicy Bible allegory; Steinbeck said so. He also said all the books and stories he wrote before East of Eden were warm ups for East of Eden. He called it “the first book,” and he dedicated it to his sons. Steinbeck was married three times and he lived the final thirteen years of his life in New York City with his third wife, whom he loved very much. “I am in New York,” he wrote to his editor, “surrounded by love.”
Woman on subway, NYC 1973. Photo: Erik Calonius, US National Archives.
My Big Apple bedazzlement continues.
In 2013, the Census Bureau reported 8,405,837 million people living in New York City. If nothing about that number has changed except that me and Yuri moved here, it’s now 8,405,839. If you count my sock monkey in the number, which you should, we can get to a nicer, roundish number of 8,405,840. I’m confident Yuri, Pendennis, and moi are not the only changes to the New York City population since last year, but this is why its funny.
All of these people. There’s one of everything.
I play a little game when I’m out and about. When I see someone totally one-of-a-kind, or outlandish, or remarkable in any way (and everyone is remarkable in some way) I note their characteristics and then try to imagine imagining them. Like:
“Could there be on this earth, at this moment, a person who is a nun, around fifty years old with pink socks, a guitar, and a suitcase with a Grateful Dead sticker on it? Could that person possibly exist in this wide, wide world?”
Then I answer myself that yes, there could plausibly be such a person because in that moment when I’m asking myself, that means I am looking at a person who matches that exact description. The nun was standing in front of Penn Station the other day, waiting for a bus, I assume. Then I play some more.
“Does a person exist who has a spiderweb tattooed on his face and wears corrective shoes?”
Yes, this person lives on my block. Yuri and I call him “Spiderman” and he is frightening to behold. He is acutely homeless.
“Could there be a 4’5 Asian-American girl with a panda backpack and a tattoo of a Pac Man ghost that covers her entire leg, who is screaming at her boyfriend that she wanted peanut butter froyo, not caramel froyo, dammit Reggie????”
Yes, that argument happened about an hour ago out on St. Mark’s Place.
“Is there a male model whose girlfriend is also a model, and are they both wearing large hats and are they both wearing all denim, and are they both Serbian?”
Yep, and yep. Just another piece of the crowd on any given day.
And consider what you’re wearing. Right now, look at your outfit. Someone in New York has that exact thing on, I’m telling you. I can’t say I’ve seen them in it because of course, I can’t see you in it. But someone has it on. They might even share your name.
There’s only one you, but New York gives that concept a run for its money.
As the well-wishes and words of kindness came in last night/today regarding yesterday’s post, I felt subdued and grateful. I also became concerned that the sharing of my UC story thus far was potentially taking up too much air time in people’s heads, thoughts, prayers, etc. I shared the first half of the timeline with a desire to inform, possibly assist, and maybe even entertain (seriously, you can’t write this stuff.) But when the compassion came at me from all sides I suddenly felt guilty that I had directed all of this energy at myself when really, we’ve all got botched j-pouch surgeries. We’ve all got a health crisis.
We are all temporarily abled. That’s not just a politically correct catchphrase: it is one of the truest things I know. Our bodies are systems; systems fail. We are organic matter; organic matter gets infected, infested, and eventually rots away. There’s nothing to be done about it and to preface it all by saying, “Sorry to be morbid, but the funny thing about bodies is…” is to keep the yardstick in place that distances us from the reality of our rather absurd situation. It is my fondest wish that every person reading this is full of vim and vigor from their first day to their last, but it’s more likely that most of us will deal with significant health issues somewhere along the trek. Sooner, later, or now.
So hang my tale: we all need compassion. By virtue of being human, we all need loving kindness. It’s hard down here. And that’s when we’re healthy and well! Beyond that, many of us have diseases and afflictions that do not call for surgery and never will. There are those among us who are quite sick indeed but look perfectly fine. Those people need emails of encouragement, too. They need blog comments. And so it was that I felt I had gotten too much of the universe’s healing energy yesterday and today. I will send some along to the next fellow with your regards; maybe it will come back to you, as you also need it. Sooner, later, now.
With that, let’s dive down into the second half of what happened so far in my life, vis a vis being sick. When I returned to Chicago in ’09, things took a turn from awful to downright horrid.
Summer ’09 – My then-husband leaves for a year to train for the Army Reserves. A decision we made together proves disastrous. He was away, my entire world/existence was changing daily. A gulf formed that would never again be brooked.
August ’09 – I am declared well enough for the “takedown” surgery at Northwestern. The ileostomy (stoma) I had is poked back inside my belly and reconnected to the internal j-pouch. In theory, I should be able to continue my life now, albeit with a “new normal.”
September ’09 – My health rapidly deteriorates following the takedown. Turns out the leak has not healed. Waste is leaking into my abdomen from the pouch. I am hospitalized — can’t remember how many times — over the next few months. (Silver lining: I begin to make quilts for sanity preservation.)
October ’09 – “Bio-glue” is squirted into my j-pouch in attempts to “plug up” the leak. Bio-glue is what they use to glue heart muscles back together after surgery, apparently? While the glue does its thing, I am told “No food allowed.” A PICC line (my third; a mega-IV that is inserted via ultrasound into your arm and travels through a major artery to dump medicine/food directly into your vena cava) is placed and I am put on total parenteral nutrition (a.k.a., TPN, a.k.a., “feeding tube”.) Twice a day, I hook up a gallon bag of white fluid into a port in my arm and sit still while it is pumped in. I have several IR drains, as well. I am a ghost among men.
November ’09 – TPN and bio glue deemed a failure. Pouch needs more time to heal after all. I will be re-diverted. (Translation: I will get another stoma.) Surgery at Northwestern. This time, I get an epidural. A psychiatrist visits me in the hospital post-surgery and recommends I go on an antidepressant. I take her up on that.
December ’09-’11 – Life continues apace. My marriage falls apart. I continue to work as a freelancer, building Quilty and doing work in the theater in Chicago to take my mind off my health issues and my broken relationship. Bag leaks in bed, painful rashes, etc., are par for the course with the second stoma as with the first but it’s a known quantity, at least. I begin to practice yoga with obsessive drive: I make deals with the universe that if I get healthy enough before the second takedown a year from now, I will make it.
June ’11 – Second takedown. Northwestern. Epidural. Things go well.
Fall ’12 – After a shaky but decent year, things begin to crack. I have a fissure. I also have a fistula. (I leave those things to you to look up. Do not image search.) Various methods are deployed to deal with these issues. I work harder than I should, afraid at any moment of hospitalization. There are several, usually related to the fistula or flora issues in my ruined guts. I make a series of self-destructive choices. I am wildly productive.
Fall ’13 – The fissure has come home to roost. I am crippled with pain. An ambulance comes to my condo to get me on the worst of the nights; they break my front door. I get into a pattern where I know when the fissure is about to do its worst; I frequently take the bus up Michigan Ave. to the ER. Hospitalizations. Pain medicine. Lying to everyone about how bad it is. Describing the pain to someone, I say it’s “like having a gunshot wound that you sh-t battery acid out of approximately twenty times a day.” (I stand by this description.)
Then, up to now – Good days, bad days. I got a pain doctor who recommended an internal pain pump. This is a morphine drip, essentially, placed into my abdomen, which I then pump when I feel the agony coming on. I decline, not yet ready for another apparatus. Probiotics. Lost days. Days packed so full, no one will notice the ones when I’m useless.
Remember, this is the timeline of the health crisis. One only needs to look back at PaperGirl, or the issues of Quilty magazine or the shows, or the other shows, to see that life has been much more than just this list of woe and setbacks. Joy and wonder, and gifts abound in my life. Success and learning and all kinds of wonderful life has been lived since 2008. And there have been all sorts of failures and good, old-fashioned crappy (hey!) days that had nothing to do with any of the body stuff, too — that’s the real kicker. Good, bad, or otherwise, though, this timeline is a specter. My experience and condition don’t define me, except that both kind of do.
I am going to make cookies for Yuri now. Good grief! [Correction: Cookys! I meant cookys!!]
This slice of birthday cake is the image for this post IN DEFIANCE OF PAIN! (Ironic note: I can’t actually eat birthday cake. Frosting, maybe.)
For folks who might be new to PaperGirl and/or my intestinal odyssey, I thought it would be appropriate to offer a brief timeline of events. I write it down less out of a desire to, you know, write it down, than to inform those who without it might draw incorrect conclusions about the trajectory of my illness or fail to see the pretty extreme case it represents. Most people do not experience the trouble I had with all this. If you thought what has happened to/with/at me is what happens to anyone with UC, you would be (blessedly) wrong, even though there’s no good way to have this intestine-chewing chronic condition.
It’s remarkable to me how many people, upon learning that I have experience (!) with ulcerative colitis, will say, “Oh, dear. My [family member, kid, self] has had Crohn’s since 2006; I know just what you’re going through.” Too many people say this. [EDITOR’S NOTE: Oof, that came off wrong, I think. I meant that “too many people have these diseases,” not that too many people offer their empathy! Heavens!]
Warning: I’m not going to mince words, surgeries, or diagnoses. Again, in the interest of providing information for those who are perhaps facing a diagnosis, or for those who care to know more about a worst-case scenario, I’ll give you the straight dope on what’s happened to me up to the present day. It’s like I’m donating my body to science without having to die! Yet!
August 2008 – Over the course of several months, the weird symptoms I had experienced on and off for years grow grim: I am passing quantities of blood and what seem to be chunks of tissue. The month or so before I go to Mayo Clinic, I am using the toilet 30 times a day.
September 27th, 2008 – My wedding day. No symptoms. Blissfully happy.
October 20th – Mayo Clinic. Drive through the night. Doc takes one look at me and sends me to ER. I am put on heavy steroids and NPO (“nothing by mouth,” not even water, for fear one sip will burst my colon) for seven straight days; this does exactly nothing to my colon, which is “in shreds,” as one doctor put it. I am diagnosed with advanced ulcerative colitis.
October 15th-ish – Surgeons tell me I have two options but really only one option, since the steroids are not working: J-pouch surgery. This is where they remove your entire large intestine and fashion a new plumbing system for you out of your small intestine, called a “j-pouch.” While this new plumbing heals inside your body cavity, you pass waste through a temporary ileostomy, or stoma. A piece of my small intestine will come out of my tummy and I’ll wear a bag, in other words. I “choose” the surgery. I ask when it will be. “Tomorrow,” says the surgeon, and I sign on the dotted line. It snows in Minnesota that night.
October 20th – Surgery. I wake up screaming. Insufficient anesthesia.
October 20th-November 20-something – Everything that can go wrong has gone wrong. I have abscesses, infections. There is a leak in the new plumbing. This is not typical. An NG tube is placed. A PICC line is placed. Many IR drains are placed. My insides are “bathed in pus,” as a later doctor would say. TPN (feeding tube.) Thirty-pound weight loss. Horror show, fun-house-sized syringes extract fluid and pus from my abdomen. Stoma separation occurs, which means my tummy pulls away from my stoma and there’s an infected moat around the thing. My then-husband and mother are living at the hospital, basically. I am on a Dilaudid pain pump and live in a world of stoned dread interspersed by visits from residents with bad news. Mom asks lead surgeon if I’ll die. “I don’t think so,” surgeon replies.
November ’08 – Home to Iowa. Full-time care needed. Mom flushes drains daily. Husband gives Heparin shots. Everyone is depressed.
November ’08 – February? March ’09? – Skeletal. Sick. Why am I not getting better? Trips to Rochester, MN through ice and snow. I remember very little, then or now, of this time.
Spring ’09 – Return to Chicago. Ditch Mayo for Northwestern. Infectious Disease team finally cures the bacteria swimming in my gut. I begin to eat again. Stoma healed.
…and I actually have to pause here because this is when the really bad stuff happens and I’m a little exhausted from recounting this much, frankly.
Second half of timeline tomorrow, if you dare. Get some cake, maybe!
Moving to a new city means finding a new salon, a new grocery store, a new bank branch. For me, it also means finding new doctors. On my shopping list: GI, OB-GYN, primary care, anesthesiologist, and possibly a colorectal surgeon, but I was crossing my fingers that last one could wait. Looks like not.
It’s not that I want to have all these doctors. I’d like to have zero doctors (no offense to any physicians out there) but that’s not realistic for me. My case file is the size of an oak tree stump: I need people with stethoscopes in my life. And so I did some hunting and found a primary care doc I like and he has so far made good referrals to me.
On Wednesday, I saw my new GI. It was my second visit. He was wearing a bow-tie this time. If he had been wearing a bow-tie on my first visit as well, I might not like him as much as I do. But he is a man who clearly varies his bold neck-tie choices; this causes me to put more confidence into him as a physician. Sure, it’s solid reasoning.
Dr. L. is concerned about me. I’ve got some issues that aren’t going away since my last surgery in 2011. Sometimes they hang out off in the distance, sometimes they creep into the frame and cause real trouble, sometimes they come in and kill everything.
“Have you ever considered…” Dr. L. paused, and set down his pen. What he was about to say required full eye-contact.
“Have you ever considered going back to the ostomy?” he asked. He paused. “Choosing a permanent ostomy, I mean?”
I didn’t say anything. “Choosing” is not a word that has come into play much in the years since I was diagnosed with ulcerative colitis. Not in doctor’s offices.
“The troubles you have, they would go away with a permanent ostomy,” Dr. L. said. “It’s a big decision, I realize that. But…” I was staring at my feet. My feet were dirty because I live in New York City now and New York City is filthy and I was wearing sandals. My feet looked cute and filthy. I thought about how my sister and her fiance Jack went to Tokyo for New Year’s and Rebecca told me all about how in Tokyo, there are no garbage cans. Everyone packs their trash in little bags and throws everything away at home. Toyko compared to New York!
“I’m not sure I’m ready for…” I trailed off. “I don’t know.” My voice was a croak. The ostomy. Permanent. I thought I was done.
My throat felt tight and hot. Though my body is often weak and I live an inconvenient, painful, and senseless physical existence (as it relates to my guts) 80% of the time, the one thing I have going for me is that there is not, presently, a bag affixed to my abdomen that catches excrement that oozes out of a pulled-out piece of my intestine. I did have one of those bags and one of those pulled-out pieces of intestine for about three years, in total. Not great.
But what I deal with now is also not so great.
“Do you think,” asked Dr. L., “That your partner would be okay with something like that? Do you think he would be…understanding?”
My heart clenched. An inward moan. Yuri.
“I don’t know. I’m not quite ready for that, Doc,” I said. No crying, no crying. “He’d be wonderful, sure, but… I’m just not. He’s younger, you know, and I just, ah…” Tears were forming and I needed to stop the conversation immediately. “I’ll think about it.”
“Okay,” said Dr. L. with a kind smile. “I’d like you to see a colorectal surgeon about a treatment we can do for you in the meantime.” He then explained the treatment, and I was glad he did because it’s so awful, it got my mind off the ostomy. I could instead be horrified by what the surgeon will do to me (for me?) in a few week’s time. Much easier to focus on that and my filthy feet.
“Thanks, Doc,” I said, and got the surgeon’s name and number. “I like your bow-tie, by the way.”
“Thank you,” the doctor said, and went out the door. I hopped off the exam table, removed my paper gown, and got dressed to go back out into the city.
Screenshot, Quilty. Season Three, maybe? My head is 10lbs more pointy in this picture than it is in real life. Also, I have 10lbs better posture in real life.
Sometimes, I think I must be out of my mind to do what I do for work these days. I’m on camera a lot and I find it painful to be on camera. Why? Because:
– Whatever you’re wearing, however you style your hair, that version of you is out of date by the time the show airs and forever afterward. You’re like the new car that’s just been driven off the lot — and no one likes a depreciating car.
– I’m not sure the camera adds the proverbial 10lbs or not, but there is most certainly a widening that takes place; an unfortunate spread of oneself onscreen. Is it the worst thing to look a bit more zaftig than you are in person? No. Does it feel unfair when you’ve been working hard to keep fit precisely because you know you’ll be on camera in the near future? Yeah, it does. [Note to self: First time using ‘zaftig’ in blog, possibly first time using it anywhere. Mark in planner.]
– You think you sound one way, but you don’t. You sound that way.
– Editing can delete a multitude of sins, but you can’t edit down to nothing. Thus, the horsey laugh, the bad habit of interrupting, the weird thing you said weirdly — it’s all on tape. Forever.
If you find yourself having to be on camera anytime soon, don’t despair. I have come up with five ways to help you cope with the trauma. Here now:
Mary’s Top 5 Survival Tips For Watching Yourself On Camera
1. Enjoy several alcoholic beverages before you begin. Everyone looks better after a couple drinks, right? This applies to you watching you. If you can get to the point where you start hitting on yourself through the screen, you’re in a great place.
2. Have a friend watch with you. This needs to be a friend who loves you so much she/he can withstand two of you for the duration of the video. Put them in your will if they agree to this.
3. Worried about your hair or clothing choice? Those potential blunders fade quickly when you realize you were younger then than you are now. Instantly wistful and desirous of that outfit, now, aren’t you? Mm-hmmm.
4. Oh, come on. You must’ve said something humorous or intelligent. Find that instance and play it multiple times. Then let the video continue while you go to the bathroom or get more snacks/vodka.
5. Go watch a bunch of Beyonce videos. Isn’t Beyonce amazing? There you go, much better.
The first book in the American Girl Doll series for Civil War-era girl, Addy. That would be double-pink she’s rocking.
The webinar series I have begun is proving to be as educational and groovy as I thought it might be. The next installment is next week, Wednesday, July 24th. The time of the show changed from the afternoon slot we had last time to accommodate those who wanted an evening time slot this time. At 8pm EST tomorrow night, it’s showtime. (Is that prime time?? I think it is! Very exciting.) As always, you don’t have to watch the thing live; you can download it whenever you please and watch it whenever you please.
Next week in the Color Me Quilter webinar series, I will examine pink in American quilts and help you use pink in your own quilts. We’ll talk about cool toned pinks (“bubblegum” pinks popular in the early 20th century) vs. warmer toned ones (“double pink,” a.k.a. “cinnamon pink” all the rage during the Civil War) and we’ll look at the pink stars of the quilt shows — think Rose of Sharon quilts, charm quilts, and countless baby quilts, of course. Goo-goo, ga-ga.
As for me, well, I adore pink. Slavishly devoted. If stopped on the street and asked what my favorite color is, I would have to say red, “in small doses.” But doesn’t that mean pink is, by default, second in command? And if I prefer red, meted out, might I accept pink in waves? Why, yes. Yes, I would. Do. Give it to me.
The calmness of pink. Its wink. The quiet power of pink and its allies — for you don’t put garish bright yellow with pink, or a crazy Kelly green, not if you’re wise. Pink needs gentleness around it; all goofiness must go. So pink attracts like minds. And I like pink’s mind.
Join me for Color Me Quilter. Wednesday next week. Let’s spend time together and geek out about our quilts. Let’s get inspired by the color cool enough to not even want to be red.
Tulane cheerleaders, 2008. Image in the public domain.
The toughest thing about being in a new place is the lack of perspective.
I live in New York City and I have no perspective on this experience yet and won’t have it for some time, because that’s how perspective works.
I look back on my twelve-plus years in Chicago, I see eras. There were the First Years, the rough ones, with their questionable choices and misbehaviors (all with the best of intentions, of course.) Those years contained the Poetry Years, thank goodness, or I might not’ve survived at all. That era, with all its earnest youthful disregard gave way to a better time: the Affianced Years. That was pleasant. I had found someone I cared for deeply and was enough of an adult to pair up in a real way. My foolish choices were slashed down to (almost) nil. And I wasn’t a waitress anymore. Right before the Affianced Years began, I began to be able to make my living as a full-time writer-performer and I clung desperately to that fact. The proclamation was (and has remained) a cornerstone of my entire identity. It probably matters too much, but for me, I can’t do it any other way.
The Marriage Years immediately followed the Affianced ones (they’ll do that) and they overlapped entirely with the era known as When I Was Sick. (I was diagnosed less than a month after I walked down the aisle; surgery was a month later — to the day? — of my wedding.) But inside those years were the Best Theater Years I ever had, making art with the Neo-Futurists.
And then The Divorce. And then Downtown Me. And then I left.
Anyway, all this is to paint — mostly for myself, I have to admit — the picture of what happened back in Illinois. Broad strokes, yes, but it’s chronologically correct.
I’m in the First Years again.
And it’s great here, and I’m not the twenty-one-year-old girl (good grief!) that I was when I had my first round of First Years, but I know full well that I have a whole lot of perspective to make. I will get lost a dozen times. I will be mistaken about the character of this or that person. I will embarrass myself. I will not find my favorite shops for at least 6-12 months. There’s no way I can learn the shortcuts: I don’t even know the longcuts.
I’m not exactly bummed, but tonight, I know too much about not knowing anything at all.
A poet friend of mine in Chicago used to do a piece about his heritage. Rather than examine his family tree, he focused on behaviors he had picked up over the years and memes that had stuck. His “heritage” was more about the people he knew or had known, rather than dead people he had never met. A certain expression he used came from his dad, for example, and years back he had consciously adopted specific laugh from a kid in school he thought was really cool.
I always liked that piece because it hit on something so true: we are the people we know. We know the things we know and care about the things we care about because of what we pick up from others that we feel looks good on us or works well. It can be a laugh or a political view. A gait. A preference. An entire life path.
There is perhaps no faster meme generator than The New Relationship. Yuri and I are swapping behaviors and ideas and memes right and left. I see it, I feel it; he sees it, he feels it. It’s great fun. (Think of the inside jokes you have with a loved one. That’s meme-swapping.)
Here’s a great example of what I mean by all this:
Yuri has shown me that I never need to buy deodorant ever again.
Wait.
Yuri smells good. And so do I. Neither he nor I are advocating going au natural, here. What he has shown me is that baking soda — pure, straight up sodium bicarbonate — is the best deodorant money can buy. After your shower, you put a little in your paw, maybe with a little water so’s that it’ll stick, and you apply it in those cute armpits of yours and you will not smell. You will stay dry and fresh and you will not have purchased a cake of deodorant at the store that a) smells weird and b) costs a lot and c) has plastic all over it and maybe aluminum or weird stuff inside of it. I’m telling you: baking soda works. It works better than any deodorant I’ve ever tried. I’ve been using it for months, now, and it has not failed me.
The natural deodorants you buy at the store that use baking soda? Pffft! Skip ’em. Not only do those very expensive “all-natural” deodorants not work, they’re just puttin’ lipstick on a pig! (I don’t know if that’s exactly what they’re doing but I have been wanting to use that expression for several days.) Listen to me: you do not need to buy any of these products ever again.
Put. Baking soda. In. Your armpits. Put it in your armpits!!
I’m all worked up. But it’s just that wonderful. Think about the money a person could save over the course of a lifetime because of this tip! If you switch to baking soda, why, together we could save millions! At least a few thousand. That could go to a lot better things, that dough. I don’t know what.
And so it happened that I became a woman who has baking soda in her medicine cabinet. If anyone ever asks me about it, I will say, “Oh, yeah. It’s the best deodorant you can use. Just plain baking soda. I learned that from Yuri.”
