Beware Of Almonds, GI Sisters and Brothers (Part I)

posted in: Sicky 29
Welcome to hell. Image: Wikipedia.

 

Something just happened and it is bad.

I accidentally ate a food that has almonds in it and now I wait for suffering. That’s not me being dramatic. In about two hours, it’s curtains for me.

First will come the twinges of pressure, followed soon by the first cramp. Then the gurgle. Then the clutch. The clench. And then it’ll begin: I’ll be in and out of the bathroom many times. How many times? Many. It’s likely I’ll cry at some point because when you’re in and out of the bathroom as many times as I’m about to go, there are breakdowns. First come the soft tissue breakdowns, if you catch my drift? Then, because of that, emotional breakdowns are likely. I’m in for pain tonight.

Rather than suffer in silence, I decided this was a terrific opportunity (woo!) to tell you about my problem with almonds so that you can benefit from it or relay it to anyone you know who suffers from GI distress of any kind; most specifically, someone like me, who possesses a J-Pouch. Warn them that for a dear friend of yours (that’s me) almonds are a hellscape of torture and agony and, if they are like me, these nuts should be avoided at all costs.

[If you aren’t sure if someone you know has a J-Pouch, you may not know them well enough to ask; if you’re kind and the two of you grow closer, however, they will eventually tell you about it. If you have a J-Pouch, you definitely know. And for all those who don’t have their very own J-Pouch and don’t know anyone with one, please keep reading, as this post is for you, too. Life is long and you may very well use this information later.]

Now, then.

I’ve heard that folks with Diverticulitis can’t eat popcorn or things with seeds, e.g., strawberries, “everything” bagels, etc. The trouble is that super-small stuff can get caught along the way and I understand that when this happens it can be blindingly painful, often requiring a hospital visit.

But for me, popcorn is great. I have it (with a nice pinot noir) for dinner more often than I’d care to admit. Some of my other other brothers and sisters in the intestinal failure business can’t eat gluten — ever. I’m halfway in this camp and when I pass up gluten at a restaurant, I like to laugh and say, “Yeah, but I was gluten-free before it was cool.” In my case, too much gluten causes inflammation and for a girl whose large intestine immolated itself, keeping inflammation to a minimum is the way to go. But unlike people with an intense gluten allergy, I can have spaghetti sometimes and no one dies.

Ah, but almonds.

Let me take you back to 2013. You’d think the worst chapter of my health odyssey was Ground Zero, ten years ago, at Mayo Clinic, when they removed most of my guts and screwed up the surgery. You’re half-right but half-wrong, too, because five years later, every IR drain, every PICC line, every setback and ostomy separation at Ground Zero went head-to-head with the chronic fissure that showed up and utterly ruined me for at least a year. The fissure ruined me 24 hours a day, 7 days a week, endlessly, always, constantly, during that time. The fissure became the axis around which my entire life revolved. The fissure became a piece of my consciousness. The fissure was my slave-driver, and I use that term with an understanding of its revolting definition.

And in all the hospitalizations (I lost count); the sick days; the awful ways I tried to cope with the problem (you’ll have to wait for my tell-all memoir for that) — in all that time, no doctor, nurse, or well-meaning pal ever, ever asked me: “What are you eating?”

If they had asked me, I would’ve said, weakly, traumatized: “I don’t know .. Not much of anything because I’m so scared to pass it … In the evening, I’m probably drinking too much Chardonnay because, ha, ha, it isn’t solid … Um, for breakfast … Oh, I eat almonds and Nutella in the morning, usually.”

That’s right. My breakfast for many months — because it made me happy, it was easy to prepare, went great with my Earl Gray tea, and was gluten-free, which was supposed to be a good choice for me — was a handful of almonds in a pretty teacup with a dollop of Nutella on the top. Who wouldn’t want to eat that, right? And I wasn’t supposed to eat toast, after all. Gluten bad. So Nutella and almonds are what I ate. Day after day.

And day after day — ah.

Sorry. It’s time to go. I’ll pick this back up tomorrow, and I won’t make you wait. But I can’t wait. Because it’s starting.

xo
Mary

 

“Ahm Frum a Town Cahled ‘Ninety-Six.'”

Not yet available on iTunes. Image: Wikipedia
Not yet available on iTunes, sadly. Image: Wikipedia

Being in Atlanta reminds me how much I love the southern part of this country. Women from all over this region came to the show; I met Tennessee ladies, girls from Alabama, and a South Carolina lady who stole my heart. You know how you just zap with a person, sometimes? It’s the face, the smile, or the laugh — it could be the accent — and you recognize it, somehow, and maybe you can’t say why, but you’re just happy to be there. I had that feeling with this lady. We’ll call her Sue. Here’s how the conversation went:

“Mary. Ah was so excited to get the chance to meet you. Ah just luve your show. Ah watch it ev’ry week. You and your momma are just so sweet together.”

“Sue, you’re too kind — thank you. Thank you for watching the show. I like working with my mom, so it’s not too bad of a job. Where are you from?”

“Ah’m from Ninety Six, South Carolina.” She gave me a warm smile as I cocked my head, which is what every person who does not live in Ninety Six, South Carolina has ever done to Sue when she tells them where she’s from. “That’s raahht,” she said. “The town ah’m from is called Ninety Six. Now, isn’t that funny?”

Utterly charmed and curious as everyone else, I asked her why her town was named after a number. Sue told me that as legend has it, a young Native American woman had a boyfriend in the British Army. I interrupted and said that did not sound like a good idea.

“Oh, you’ve got thaht raaht,” Sue said. “Mary, it’s just a legund, but ah lahk to think it’s true. Anyway, she rode nahnty-six miles to tell her little boyfriend the British were coming. And that’s how Nahnty-Six got its name.” Sue was quite proud of her town and its peculiar name. I’d be proud, too — especially because my town’s high school football team would wipe the floor with the team from Ninety Five.

We chatted. Sue told me she was a breast cancer survivor. I gave her a high-five and asked if she was staying on top of check-ups and things. Sue patted my arm and said quietly, “Well, ah’m afraid it’s back, honey. It’s in mah lung this tahm.”

My eyes burned. Dammit. She was just so awesome. Dealing with cancer at all, let alone again — the pointless, “Why?” lodged itself into my brain and nearly eclipsed the moment we were having. Sue said she came to the show to enjoy classes and exhibits, to spend time with friends and to meet me, too. “It’s been a wonderful tahm,” she said. “Ah told mah husband, ‘Ah’m going to that quilt show and if mah doctor says I can’t, you tell him ah’m goin’ anyway!”

Sue, it was a pleasure. Now you go wipe the floor with Ninety Five.

On Being Sick & Observed

posted in: Day In The Life, Sicky 2
She's asking for her laptop and headphones. Illus: A woman in bed in a sick-room, attended by a physician, receiving the blessing of the Madonna del Parto, 1872.
She’s asking for her laptop and headphones. Image: A woman in bed in a sick-room, attended by a physician, receiving the blessing of the Madonna del Parto, 1872.

A couple days ago I fell sick. I’ve been feeling well for a good stretch, so this was a drag on a number of levels. Living alone, such spells — when not hospital-bad — come and go and I do what I do to get well and that’s basically that. But my German friend is visiting and I am therefore not just sick but being observed being sick and I’ve been considering how this alters the sick one’s experience. I want to work in that quantum-physics phenomenon about how the behavior of something will change when being observed, but all I could find were five different names for it and something about a cat, so I’d better leave it alone.

There are three problems with having someone around when you’re ill. The first problem is that you need help but you also feel like going into a dark corner and snarling when anyone gets close, wounded animal-style. This is a conflict. The second problem is the mirror problem. When a little kid turfs out on her tricycle, it’s not the skinned knee that makes her wail; it’s the look on her parents’ faces. They panic or look really concerned and bam: the fall is now a Huge Deal, cue sobs. Being sick and observed is a little like that. Yes, my guts are mutinying; yes, I’m walking around like a ninety-year-old. But if I were alone, I’d probably just feel crappy, frustrated, and seventy-years-old. The look on my friend’s face when I shudder and sink into my easy chair makes my state way worse.

The third problem is the fixer-upper problem. Like any caring person, my friend wants very much to fix me, to fix the situation; I’ve dealt with this kind of beautiful, valued concern for years and you mustn’t think I resent it. But idea after idea (e.g., “What if you ate more yogurt?”), suggestion after suggestion (e.g., “You need to sleep eight hours; no less”), and indeed remonstration after remonstration, (e.g., “You put so much pressure on yourself, Mary” and “You travel too much,” etc.) serves to make a person feel guilty and that her behavior is the problem. If only I could find the perfect food formula, if only I would change one thing about my lifestyle, if only I would be someone else, then I would be okay — and be okay forever. Talk about pressure.

Should I live alone forever? Am I less ill if I am alone? Is any person with chronic illness or even a bad cold less ill when in solitude? This is a worthy question to consider and I’m sure I’m not the first to consider it.

It’s also true that I do not notice the gallons of tea I drink every day until someone points it out.

 

A Poopy Crime In Utah!

posted in: Day In The Life, Sicky, Tips, Travel 3
The sketch I made of the whole incident. It's even on my letterhead!
The sketch I made of the whole incident. Hey, that’s my letterhead!

I haven’t told anyone this story from the road trip yet because there is shame involved. It’s a tad longer, but stay with me because it’s got a great payoff.

One night in Utah, I had to go to the bathroom in the middle of the night. This was not unusual, so before lights out, I had done my preparations. That night was a sleep-in-the-car night, which meant that once the seats in the SUV were released and the make-shift bed was made, I put my flip-flops, Handi-Wipes, and fluffy roll of TP into the cubby in the passenger-side door. On the hook above the window, I hung my hoodie and the car keys.

When you are inside a locked car and then try to leave it, unless you first unlock it, the car alarm will sound when you open the door. You must then stab your fob’s “Alarm Off” function, sixty times to get it to stop. When we camped in the car, of course my friend and I locked up once we were inside. This meant that in the middle of the night, when I would get up and go to the bathroom (read: bush), I would have to locate the keys in the dark, make sure I unlocked the car, then exit. Exiting, by the way, was a Ringling Bros. & Barnum & Bailey Circus clown car routine: I squeezed out the door and essentially did a sommersault onto the grass.

We were in a public park that night, so the spot I found was near the public bathroom facilities. I say “near” because the facilities were locked up at sundown, something I found out when I tried to open the door. Okay, no problem. The lights inside the brick structure appeared to be motion-sensored, so I jumped up and down and got the lights to go on, which threw light onto the grass behind the building. It wasn’t a lot of light, but it was enough to “go” by, heh, heh. So I went. Because it was 3am and there was only a dim light by which to see, I covered up my…visit with leaves and sticks and earth matter with every intention — this is important — with every intention to clean everything up in the morning. I respect my National Parks! Bleary eyed, sleepy, with grass in my hair but much relieved, I tumbled back into the car and went to sleep.

In the morning, I looked for the keys to unlock the door before Claus and I got out and made tea. No keys. Not under the sleeping bags. Not on the floor by the seats. Not in the front. Not in the back. We were trapped in the car. If we opened the door, the alarm would scream and, not having keys, there would be no way to turn it off. It was getting really hot inside that car. We finally determined that we could open the car doors because the dashboard screen said, “No fob detected,” which, considering the situation, is the best example of a “mixed blessing” ever.

We took a deep breath and opened the doors. No alarm sounded. The keys were nowhere. They were really, really nowhere. I combed the park, convinced I had sleepwalked the perimeter in my pajamas and dropped the keys. Claus looked under the car twelve times. We looked for an hour and then I began to cry. Those keys, impossibly, were Gone. Do you know how much it costs to get a replacement key for a rental car? Both cell phones were dying. This was a bad, bad situation. Oh, and one other thing: I looked many times around the makeshift bathroom area I had created at 3am. Not only were the keys not there, but my bathroom, such as it was, was not there. I didn’t have to clean anything because there was nothing there. No paper, no leaf cover. Someone had cleaned.

I called the Park District. Had someone been by? Had they found keys at XYZ Public Park near Zion?? I was going to clean up! Please! Don’t judge me! And okay, judge me, but did someone find keys for heaven’s sake?? Nothing here, they said, but you could talk to the police. I was patched to the station and I blubbed the story to the officer there, that I have a condition that makes me have to poop all the time [sorry] and I have to go in the night, and was it at all possible that a Park District person came through, saw that there was an…incident, and cleaned up and maybe found car keys nearby?? Somehow??

There was a silence. Then:

“Well, I’ve got your keys,” the officer said.

I almost fell off the memorial stone slab I was sitting on. “You do??? You DO???” I flapped my hands at Claus. “You have them?? But…but how? Oh, god… Someone found my… Oh, no, oh no…” And I began blubbing again that I’m not a bad person, that I’m a law-abiding citizen (mostly) and, “I’m so, so sorry that –”

“First of all, you can’t be campin’ in the park,” he said. “And yeah, the guy who does the bathrooms over there found the mess. He waddn’t too happy ’bout it, either. Stepped right into it. He found the keys in the grass there and brought ’em over to us. I can get ’em over to you in about an hour when I’ve taken care of this other thing.”

I wept. I told the officer that I would pay any fine he’d slap me with and would enjoy paying it. He said that wasn’t necessary. When he brought the keys I again begged him to let me give him money. He declined and said it was all no big deal and to get along, now. I think he took pity on a girl who had slept in a car and had to poop in the middle of the night.

Later, Claus said that in the early morning, he had heard what he thought were two men arguing. We figure it was the cleaning guy, shouting and hollering when he discovered the situation. I’ll have you know from then on, I did not wait until the morning to clean up any bathroom area I created. Turns out there are these things called flashlights.

3 Procedures + 1 DJ

posted in: Sicky 3
"Twilight near Hetlingen in Germany." Photo: Huhu Huet, 2009.
“Twilight near Hetlingen in Germany.” Photo: Huhu Huet, 2009.

The title of this post is a play on the title of a song I love by the Beastie Boys: Three MCs and One DJ. The Beastie Boys were and are the best band in the world, so that settles that.

I had an upper endoscopy, a pouchoscopy, and a CT scan different from the CT scan I had yesterday because the one today involved contrast. When you have a CT scan with contrast, it means that when you’re in the big donut, you hear a voice come over the PA system that says, “Okay, Miss Fons, we’re going to start the contrast,” and then you feel the strangest, wildest warm liquid spread through your body starting at the point where you have your IV placed. Contrast fluid is getting pumped into your veins and you feel it! and it makes your belly warm, and it makes your arms and legs warm and, let’s be honest, it makes all your parts, hm, very warm and it’s not unpleasant, but this is not going to be offered as a spa treatment anytime soon.

So those were the three procedures I made reference to in the title; the DJ was just the muzak over the speakers as they wheeled me on the gurney to and fro and to all over these Northwestern hallways.

Did I mention yesterday they did a freaking spinal tap? And that I got three freaking sacs of human being blood? I have no recollection of writing yesterday’s post but I can’t bear to go back and look to see if a) I really did and b) if it needs revising/overhauling — I’m sure it does. No use. Typing through pain medicine is like typing Morse code through Jell-o, through pain medicine. It’s very anxiety-causing. Each PaperGirl post is a mini-newspaper, you know, except that every post is a first draft. The audacity.

The doctors don’t know what’s going on. Tomorrow, a pelvic ultrasound. They have to figure out where the Sam Hill all this hemoglobin is going. Fibroids? Something more sinister, still? My sister Rebecca and I have decided to call my blood cells my “hemogoblins” and we have to corral them all back to where they need to be.

Dull as my brain might be at the moment, the moments themselves, they live in the Land of The Neverdull.

Also, you must remember this. 

Winged Victory: I Am Better.

posted in: Sicky 5
Winged Victory of Samothrace. Photo: Wikipedia
Winged Victory of Samothrace. Photo: Wikipedia

Sometimes, the universe cuts you a break and life’s cheese grater is swapped for a feather pillow. This morning, I flew into NYC to have a procedure that would determine the health of my intestines.

Diagnosis: awesome.

There is no detectable inflammation. My pouch is scarred, it’s too small, and related aspects of all this will cause me discomfort from here on out, but how could I possibly care when the doctor tells me I’m not bleeding internally? My long-lost colon literally ate itself to death, but it appears my j-pouch don’t even want a snack.

When you think you’re on a bullet train to very bad news, it colors everything you do. Having a bad day? It’s worse than it would be, because in the back of your mind, you think, “This day is lousy and also I’m dying.” When you think the clock is ticking toward bad test results, a good day is tinged, too, just a little, because you find yourself fleetingly thinking, “This day is fantastic; I don’t even care that there may be something terribly wrong with me.” O, pernicious subconscious; how ye thwart joy and gladness.

That this burden is lifted from me for the foreseeable future… It’s hard to express my relief. To be absolutely honest, the tiny August Strindberg in me does wonder how long the good news can last, but the Chiquita Banana in me is beating him down with a banana.

I’m okay. I’m okay. I’m okay.

 

A Laundry List (or Two.)

posted in: Day In The Life, Luv, Sicky, Tips 10
Free label, letters by me. Oh, to have a full-time graphic designer on staff. Oh, to have a staff.
Free label, letters by me. Oh, to have a full-time graphic designer on staff. Or a staff!

I saw a woman wearing denim overalls today.

Though I would like to write about how every few years the public must endure Fashion’s attempts to make denim overalls cool (oh, how they try and fail!) and how this is just silly and I can’t believe we haven’t learned to ignore Fashion on this, I think that ought to wait till tomorrow. To go straight from talk of ambulances and surgeries to ill-fitting overalls is not nice. It’s like going from a popsicle to a steak. Jarring. Rude, in some cultures.

And so as I went about my day today, I tried to think of a good bridge. “I could write about what I’ve learned since getting sick,” I thought, and mentally wandered down that road. But on the way I came upon all the things that I feel more confused about, and things that I observed that didn’t necessarily teach me anything so much as simply surprised me.

So tonight, a few lists; tomorrow, overalls.

My Oprah Winfrey, “What I Know For Sure” List
– The saying, “What doesn’t kill you makes you stronger” is bizarre and largely untrue. More often, what doesn’t kill you leaves you weakened, compromised.
–  You can get used to anything.
– There is no time. You must do it now.
– Being in a hospital blows. Stay out if you can, but if you must go in, pack a bag. Take your phone charger, your sock monkey, your journal. Take your glasses (if you wear them), your laptop (if you use one) and anything else you would want if you have to be there for long. As bad as you feel, try, try, try to pack a bag from home to take with you. It will bring you great comfort when you wake up.
– Visiting people when they’re in the hospital is one of the kindest, nicest, most lovely things you can do for a person. I remember every last person who came to see me. Thank you. It meant everything, every time, bless your hearts forever and ever. (Rebecca, if you’re reading this, I’m looking at you right now especially. You too, Bilal.)

Curiosities
– I’ve seen myself from the inside out: I have handled my own intestines. I am kind of a badass.
– Very few people in the Eastern hemisphere get UC or Crohn’s. These are maladies of the industrialized West. One day we will know why and keep people from getting sick like this.
– Losing my hair really sucked. It came out in clumps in the shower. That was one of the worst times in terms of feeling attractive (or not.) The stoma was rough; in some ways, losing my hair was harder. A female thing?

Disappointments
– In a hospital in Tucson, AZ, in ’09 or ’10 (ER trip while visiting then-husband) I looked at my frail, perforated body and all the medicine bags hanging around my head and thought, “I will never, ever hate my body again or tell myself I should lose five pounds when I don’t need to.” But I still do that.
– You can’t go back. You can never be ten years old again, happy, healthy, running through the yard in bare feet.

Funny Things
– I have my very own semi-colon.

Timeline, Part 2.

posted in: Sicky 28
Sweet n' lowdown.
Sweet n’ lowdown.

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!!]

“What’s Up, Doc?”

posted in: Day In The Life, Sicky 22
You're fine.
You’re fine.

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.

“The Picture of Health”

posted in: Sicky 7
"The picture of health."
“The picture of health.”

It’s not often one does a google image search and comes up totally empty-handed, but if you’re searching for something truly obscure, it’s possible that there will be a “No results found for [blank]” message. To give you an example of how rare an occurance this is, I tried to think of something that for sure could not turn up any image results whatsoever. I typed in “Beckett peanut butter sandwich.”

Tons of results. Thousands.

It came as a great surprise, therefore, when I entered in (in quotes) the common phrase, “the picture of health” to find an image for this blog post and got the “No results found for ‘the picture of health'” message. Really? That surprised me. Though there were images for the picture of health without quotes, they were not what I expected, really. I suppose I thought I’d get beaming cherubic children, or expensive stock photographs of doctor/patient interactions, etc.

The best of the lot was the above picture from the Department of Health Sciences and Technology in Zurich. It’s unclear what’s going on, here, but there’s at least one object visible there in the office that one is not allowed to touch; judging from the intricacy of the robot-lobster the older fellow is strapped into, I suspect there are a few more.

I wanted to find a picture of the picture of health to be ironic. I’m not exactly the picture of health but I’m better than I was on Monday. This whole week was a bit of a wash, I’m afraid. When I was actively feeling very poorly, I was flat on my back. That was a couple days. Then there was a Doctor Day, when I got some disturbing news that I’ll share tomorrow (too tired, psychically and physically, at the moment, to go there), and then there were a couple days of Getting Back on My Feet. Today, I was hale and hearty enough to finish a quilt top and eat some chorizo scrambled eggs, so I’d say ground has been gained.

Thank you to all the well-wishers — you shall be justly rewarded. I’m not sure how or when or if I’ll have a lick to do with it, but surely something positive must come when we send funny texts and things to those who need a laff.

William Morris, Nervous Breakdowns.

You still need to pack the Sharpie.
You still need to pack the Sharpie, though. And the tape. See what I mean?

Because I’m renting my condo furnished this summer, I falsely assumed the task of moving would be less arduous and there would be no need to hire professional movers. I was wrong, and thus have spent the last two days in hell.

Fundamental truth: I am ruthless when it comes to disposing of excess stuff. I claim no bric-a-brac. I keep no old shoe. Being a purger (??) is made easier because I live and die by the words of Arts and Crafts giant William Morris, who proclaimed in 1880

“Have nothing in your houses that you do not know to be useful, or believe to be beautiful.”

Yes, Willy, Yes!

I am the anti-hoarder. I keep nothing, buy nothing that is not useful/beautiful. If I need a can opener, for example, but can only find lame ones made of plastic, I will wait until I can find a basic metal one and go without canned things. A plastic can opener might be useful but it is not beautiful, so it’s out. A classic, metal can opener is timeless! an objet d’art! I’m 100% serious and I’d like to think my home is harmonious as a result.**

But for heaven’s sake, I’m a person with a home that doubles as an office and a sewing studio. I have so many objects. Harmonious or discordant, this move is gargantuan. Do it all myself? Or even just with Yuri? What planet was I living on? (No! Don’t answer that!)

The Russian and I got boxes, a storage unit, a cargo van. Horrible, all of it. Soul-crushing. I’ve been doing my Midwest-work-ethic best, packing, eliminating, Goodwill-ing, all while still answering emails and attending to work-related tasks! I also remembered to brush my teeth! What race am I running, here?? (No! Shush!!)

As one might imagine, my productivity and emotional fitness ebbed and flowed throughout yesterday and today. This morning, I was actually in a fetal position for a spell, curled up near my desk in a sea of paper, wailing at Yuri, who was in the other room:

“Help me! HELP! ME! I’m doing the work of ten men! TEN MEN, DO YOU HEAR ME! I hate you! I can’t do this! I HATE YOU AND I NEED HELP!”

One of the reasons I love Yuri is because in situations like these he does two things:

1) he lightens the mood by coming into the room with a grin, saying something like, “Aw, who’s on the struggle bus? Who’s lookin’ so fine, ridin’ that struggle bus?” and of course this makes me bust out laughing, still on the floor
2) he helps

But the hard part about moving is never the logistics.

The logistics suck all right. But the core of it, the real trouble in River City is that you’re kicking up deadly serious dust. The longer you live in a place, the deeper and more emotional that dust becomes; if you have a strong emotional connection to a place (like I have to this place) it’s a double whammy. In the past 48 hours, I’ve hit upon a lot of life — more than I really cared to hit right now, honestly. Books, pictures, fabric, dresses, quilts — what we own owns us. And when we move we’re at the mercy of it all, we’re possessed by those possessions, even when we think we don’t hang onto much.

We do.

I do.

I hang onto absolutely everything. I just store it differently.

I store it here.

 

**All this editing may be due in part to my peripatetic lifestyle. If I’m not harmonious, I’m sunk. I heard once that “every item or object in your home is a thought in your head,” which is to say that belongings take up valuable real estate in one’s brain. A cleaner home equals a clearer head; I need every advantage I can get. 

I Spent The Night in the Bellevue Emergency Room.

Before neon.
Pre-neon.

Saturday night, my body refused to be told what to do any longer; I was forced to visit to the emergency room. I ended up at historic Bellevue Hospital’s ER from about 1am till daybreak. This is my tale.

Earlier in the day, I had found it difficult to walk. My guts were churning toxic waste and my tummy hurt a lot. My bathroom trips were numbering in the ridonkulous. I rallied enough to make dinner for Yuri and myself, but I ate very little. When every morsel you put into your body winds up a punishment, you’re don’t get too hungry. I was weak and sad. We went to bed. I woke an hour or so later and, like a wounded/dying animal, I left the bed to try and curl up with my pain alone on the couch. I found no relief there, so I scraped myself up and went to deliver the bad news:

“Yuri,” I said. “I need to go to the hospital.”

Yuri bolted upright and mobilized quickly. I made sure he packed his laptop and brought anything else he’d like to have for the next 6-8 hours. I’ve done middle-of-the-night hospital trips plenty of times; he hasn’t.

I knew from riding the subway that Beth Israel Medical Center was on 1st Ave. and 16th. (There’s a tiled sign in the subway that says, “Beth Israel, 1st Ave. & 16th”.) We’re staying just down the street, so it was okay that when we went outside we couldn’t get a cab. I shuffled along the sidewalk as Yuri tried to hail one, but I knew he’d fail. Saturday night in the East Village means taxis, taxis, everywhere, and not a ride to catch. The cabs are full of nightlife already; nothing is available. And since the East Village in way down on the island and 1st Ave. is a one-way going uptown, you’re pretty much out of luck unless you catch someone coming out of a taxi and you slip in before it leaves again. We reached Beth Israel-Mount Sinai in about 15 minutes on foot.

When we found it, though, it appeared to be closed. Like, closed-closed. We went to two different doors. I know it sounds crazy, and a New Yorker might scoff at me that I didn’t “just go around” or something, but I’m telling you, that hospital was not open. Doors locked. No people. At this point, I was kind of hunching over, too, so if there was an arrow someplace, I missed it. A taxi driver was passing slowly and we caught him.

“Is this hospital open?” I asked at the window.

“Uh…” The driver wasn’t sure what I was asking. Or maybe I just looked that scary.

“Do you know if it’s open?” I asked again, and then, seeing there was no one in the backseat, I opened the door and asked a way better question: “Can you take me to the nearest hospital, please?” Yuri jumped in and we were off, headed to the other nearest hospital, which was at 1st and 27th St.

Bellevue.

Bellevue is the oldest public hospital in the country. Since 1736, the sick, maimed, crazy, indigent, burned, frozen, dying, pregnant, drunk, beaten, wounded, frightened, blitzed, and otherwise in-jeopardy humans of New York have made their way to Bellevue for help. The first-ever maternity ward? Bellevue. The first-ever ambulance service? Bellevue. But despite all that, despite the millions (counted and uncounted) who have received care at Bellevue over the centuries, despite being a landmark of American innovation and civilization, Bellevue’s reputation is not so great. This is probably because of the psych ward.

In New York City, everything is extreme. The poor are really poor, the rich are really rich. The food is really, really good; the garbage smells really, really bad. And the crazy people — sorry, the mentally ill people — are really, really nuts. Bellevue is where they go. And throughout the hospital’s history, tales of terror from the halls of Bellevue have kept Americans in thrall; suicidal starlets, frothing lunatics, axe-murderers, giggling perverts — they all end up in Bellevue. Add to that the occasional (and sorrowful) stories of mistreatment and abuse inside the ward and you get a place frequently referred to zero-to-little irony as “the hellhole” or “bedlam.” I was vaguely aware of this history as I entered the ER. I wasn’t going into the psych ward, but the buildings aren’t too far apart.

I was admitted quickly. It seemed quiet in there. I was hunched over in my chair while the triage nurse put the bracelet around my wrist and felt a surge of excitement push past my pain. I was going to get the inside scoop on a New York City emergency room on a Saturday night! This was gonna be great.

It might’ve been great, relatively speaking, except that I was injected with morphine and I am allergic to morphine. It wasn’t Bellevue’s fault; it’s been so long since I’ve even heard that drug suggested to me that I neglected to mention that I have a terrible, terrible reaction to it. When they asked me if I had allergies, I said no; I’m used to being treated frequently in hospitals that know me, and I was feeling so sick I didn’t think to mention, “Oh, yeah. A long time ago, morphine nearly killed me.” So when I was writhing in pain on my sickbed, the very capable and kind internist said, “I’m going to give you an injection; we’ll get an IV going soon,” I spluttered, “Yes, thank you,” and zip! There you go, morphine in my arm.

It’s a sad thing indeed to be injected with something you’re allergic to.

I wouldn’t feel that allergy/reaction immediately. All I felt was drowsy and in less pain, and that was okay for the moment. Yuri got a chair and sat near me. We heard people talking on the other side of the curtain to my left and tried to listen in on what they were saying. Our eyes grew wide as we realized…the guy got stabbed! We had a stab wound victim in the bed next to us! Holy crap! There was blood on the curtain, too! Wow! Then there were cops! Five cops! All grilling the guy about the stab wound! So far, New York City emergency room report = excellent!

From there, though, the Bellevue ER took off and I went down. It was nuts. I passed out and woke up, hella nauseated, to two Jersey girls screeching next to me; one had twisted her ankle and the other was furiously yelling into her cell phone. They were both roaring drunk. On my way to the bathroom, I passed four indigent men passed out on beds in the hallway; each of their pants were 90% off. When I got to the bathroom, I couldn’t use it. It was filthy. Fecal matter was sprayed around the back of the toilet. There was blood, dried and fresh, kinda everywhere. I turned on my morphine-woozy heels and Yuri helped me back to bed. I stepped around other gurneys and sick people and caught the nurse.

“The bathroom… It’s… I can’t use it,” I said, reeling.

“Oh, yeah. That’s why I hold my urine for twelve hours,” he said. “There’s another bathroom, though,” and he told us where to go. I don’t remember if I used it or not. By that point, I was quickly succumbing to my morphine problem. I don’t remember being released. I don’t remember getting home. I slept the entire day on Sunday and today was mostly lost.

Bellevue, you didn’t do me wrong. But I still ain’t right.

Nellie Bly + PaperGirl: Impossible Conversations (Part I)

posted in: Word Nerd 0
Bly.
Yo, Nellie Bly. ‘Sup girl.

Beginning around 2006 or 2007, when PaperGirl was hosted by another server, when the layout was way different, when life was baffling and great but in totally different ways, I presented from time to time dialogues between myself and Nellie Bly. Long-long-time readers may recall these; I may dig one up one day for our fun. They’re all in the archives.

Nellie Bly is known to grammar school students across America as “the first woman reporter” and I doubt that that is true, history textbooks being what they are (watered-down and probably SEO-driven at this point.) Bly was certainly among the first women journalists to be recognized for their work in the profession, and that makes Nellie Bly cool. She’s cool enough to be the subject of innumerable 5th grade book reports, cool enough to have an amusement park in Brooklyn named after her**, and cool enough to be the only person I’ve ever wanted to be a foil to my brain in this blog.

When I was at my sickest in 2008-2009, Nellie Bly and I would have what I called “Health Chats,” where she would ask me questions about the state of my scary body and I would answer. I always told her the truth. On the days when I couldn’t possibly figure out how to otherwise narrate what was happening to me — either because I was too high on Dilaudid or because the news was too bad and too overwhelming to comprehend — writing a two-person conversation felt like my only option. But it was an option I loved. I just talked to Nellie; I just answered her questions. We talked about other topics from time to time, but for the most part, and definitely during my illness, it was “Health Chat” with Bly every week or two because it helped me get better. I believe it.

I only realized a few hours ago that it’s International Women’s Day. Re-introducing Nellie, vis a vis PaperGirl, is perfect for the occasion.

Stay tuned for the conversation.

**Recently renamed “Adventurer’s Family Entertainment Center” because no one cares about anything and everything is terrible.

Me, Dad, and Cheesecake for Breakfast.

posted in: Family, Food, Word Nerd 11
Wayne Thiebaud. Pies, Pies, Pies. 1961. Oil on canvas, 20 x 30 in.

Incidentally, that Thiebaud painting lives in Sacramento’s Crocker Art Museum. I saw it with my own two eyes, which, incidentally, are usually bigger than my stomach but never as large as my mouth.

My trip to California over the weekend wasn’t for business. I went and spent time with Leesa, my favorite aunt. She was my favorite aunt before the weekend; now I feel like we should fill out some kind of embossed certificate to announce it. Thanks, Auntie.

It had been a number years since Leesa and I had spent time together. The last time I saw her was when her father died in 2009. That was a suboptimal visit, as you can imagine. Everyone was sad about grandpa being dead and busy with funeral and burial stuff. “Sad and busy” is a dreadful state, and it inevitably comes upon you when someone you love dies. Me and my aunt wanted to reconnect without trying to work around a wedding or a funeral, so I flew out to California to see her, her adorable dog, Otto Lieberman, and the beautiful rosemary bushes that line the patio of her well-appointed California home.

We talked a lot. We drank a lot of coffee. We went to the Crocker Museum to have lunch and see art. We attended a black-tie dinner party. We talked more. We made another pot of coffee. It rained all weekend, so the main component of the visit was conversation. Lucky for me and my aunt, we’re good at conversation and share many (all?) of the same values and interests. And since 75% of my family members are also her family members, there was plenty to discuss in that area. The Fons side of the family was broken up into chunks early on in my life and it’s been a Humpty Dumpty ride ever since. This is true for me; I suspect it feels the same for other Fonses I know aside from my aunt, but I won’t speak for them.

Over the course of our visit, I got some information about my father. I haven’t seen him since Grandpa’s funeral either, but Leesa (his youngest sister) stays in contact. I am wary when I’m about to get information about him and hardly eager to ask for it; the presence of my father in any sort of reportage rarely bodes well. His issues are many. Despite my numerous attempts to make even a surfacey relationship work over the years, we have long been estranged.

I looked up “estranged” in the dictionary. I thought it meant “not in contact.” It’s a bit sadder than that:

estranged |iˈstrānjd|
adjective
(of a person) no longer close or affectionate to someone; alienated: John felt more estranged from his daughter than ever | her estranged father.

My aunt told me something by accident that made me at once very sad and very happy, which is an emotional combination more common than being sad and busy, but not any more comfortable. We were talking about pies, Leesa and I, our favorites and methods for making them. We were at the kitchen table.

“You know, we Fonses have a real sweet tooth,” she said, coffee mug in hand. It rained so hard that day, leaves and mud fell out of the gutters onto the sidewalks.

“Really? Like, all of us?” I asked, instantly brightening.

My love of sugar causes me much anxiety. I’m usually worried I eat way, way too much of it, but when I try to eliminate it from my diet (or even cut down on it) I see no point in being alive. That I was somehow not responsible for it, that my sweet tooth was a genetic sentence, that my love of pecan pie and pistachio ice cream actually served to count me among my tribe, well, this made me feel fantastic and warm inside. I instantly thought about eating another one of Leesa’s gourmet marshmallows from the pantry.

“We’re definitely sweets people,” Leesa said. “Your dad, he’ll eat dessert for breakfast. Always would, always loved to. Pie, cheesecake. That’s not for me, but that’s what he would eat for breakfast every day if he had the option. Isn’t that funny?”

I swallowed too much hot coffee. It burned the back of my throat but couldn’t melt the insty-lump that had formed there when Leesa said the words, “Your dad” and “dessert for breakfast.”

I love eating dessert for breakfast. It’s my favorite thing in the world. If there’s cheesecake in the house, I will eat a slice for breakfast and genuinely take no interest in it the rest of the day. In my world, apple pie and coffee are perfect 7:00am foods. Just today, a hazelnut Ritter Sport chocolate bar and a pot of Earl Grey tea constituted my breakfast and you betcher bippy I was at my olympic best all day.

I didn’t know I shared this trait with my father. I didn’t pick up my love for coconut creme pie with my morning coffee by seeing him eat coconut creme pie with his morning coffee. I couldn’t have; I’ve been seated at a breakfast table with the man no more than a handful of times since the divorce. To be thirty-something and discover things about your father, (e.g., he likes cheesecake for breakfast just like you) this information would be bittersweet if he were dead. But as my father is alive, these sorts of discoveries are bittersweet as well as bizarre. We could technically have cheesecake for breakfast together in the near future, my dad and I.

Technically, we could. But emotionally, we can’t. Philosophically, we can’t. Historically, we simply can’t.

I made a pie tonight for Yuri. Buttermilk-brown sugar. Seeing as how it’s delicious and wrapped in foil on the little table where we eat, breakfast is served.

 

Mary Fons, Chips

Google Analytics reveals much. But lo, like the Oracle at Delphi, the Great Google Analyst In The Sky conjures more questions than answers. Oh, Great Google Analyst In The Sky, what secrets do you hide? (Cue synthesizer music, fog machine.)

According to Google Analytics, the top-rated searches that lead to this site are:

Wow, okay.
Let’s discuss.

What can we learn?

Well, people like to get the dirt. Am I divorced? how long ago? pregnant? how recently? diseased? in general or in a specific place? But we know already that people are like that. Heck, I’m like that. Scuttlebuttery is to the Internet as puddin’ is to a long-john donut: inevitable. And bad for you — and delicious.

That “mary fons divorce” comes up before the actual URL to my website is a little weird, but all right. And I look at the words “divorce” and “cancer” attached to the googling of my name and feel a little defensive. But who knows? Maybe those searches are born of concern. I have been very sick in the past and I am divorced. There you go: your search has ended.

The “is mary fons pregnant” search throws me into a mini-funk, though. It really is true that television makes a person look wider than they are in real life. I went through a phase when I enjoyed wearing geometric tunic tops with black tights and kitten heels. A good look walking down big city streets, for sure; on television, not so much. I look like I’m wearing a different mu-mu on every show that series. Why would I be wearing such strange, diaphanous clothing on TV?

Well, many people thought I was pregnant. A woman actually came up to me in Sacramento and whispered, “Mary, I hope you don’t mind if I ask, but… Were you pregnant?” I opened and closed my mouth like a fish for a few seconds and then the woman realized she did that thing that you’re never, ever, ever supposed to do. I said, reflexively, “You’re not supposed to ask people that.” She blushed nine ways from Sunday and that was the end of the conversation. But seriously: what if I had been pregnant? I don’t have a baby. If I was pregnant in the recent past but don’t presently have a baby, we could conclude one of a number of sorrowful outcomes had occurred in my life. Best not to ask a person that. Just google it when you get home.

Enough of that. We need to consider that other google result. You know, the other one up there. Third from the bottom we see:

Chips.

Chips!?

Just “chips.” Not even “Mary Fons, chips.” But it has to be. People have to be typing in something that connects my name with chips. I’m picturing potato chips, but is it paint chips?? Chocolate chips? Chip-off-the-old-block chips? Cow chips? How can we know? Separated by a comma like that in a search engine field, it sounds like a command to eat potato chips: “Chips, Mary Fons.” Typed the other way, it’s like I’m being introduced by a friend to chips:

“Mary Fons, chips.”

“How d’you do, chips?”

:: crunch, crunch, crunch ::

“The pleasure is all mine. That’s a lovely blouse.”

I can’t explain these search results. I do not understand “chips.” But I am happy with the wisdom and insight you have brought to me, Google Analytics. Please let me know if you would like me to make a burnt offering, or perhaps tithe to you a small goat served with chips and a pop.

Tops, Ramen.

Some things, they cannot be explained.
Some things, they cannot be explained.

When I had the flu the other day, I had zero appetite. The mere mention of eating was enough to make me holler in anguish from my sickbed. Except that one thing actually did sound good: chicken-flavored Maruchan Top Ramen.

Look, I don’t make the rules. I have no idea why a block of sodium starch is a curative for me, but when I am at death’s door, convenience store ramen noodles save the day. I can say with conviction because when I was gravely ill with ulcerative colitis and the first of the surgical complications years ago, Top Ramen kept me alive. Fine, okay, the horse pill antibiotics and the doctors did their part, but if it weren’t for the inexplicable deliciousness of cheap ramen, I would have had a feeding tube earlier than I did.

I would sit on my mother’s couch, an increasingly wispy wisp of a thing, dazed with morphine and woozy from the blood thinner delivered in my hindquarters twice a day via injection. I would watch something on television (I think?) and I would try and get up to walk because that was supposed to be important, but mostly I just waited till Mom or my husband at the time would come to flush my wound drains. I’ve described a fraction of it. It was horrid.

“Honey, what do you think you can eat?” my mother would ask, coming into the living room. She had new lines on her face.

We tried ice cream. We tried cheese. We tried pudding. We tried crackers. Chips. Soups. Cookies. I would take one bite and push it away and I missed my appetite. So many times as a twenty-something woman I had dieted for periods of time, fervently wishing I could have no appetite — it sounded so simple! — so that I could slim down my hips for the summer or whatever crucial event I felt couldn’t be fun or successful unless I was skinny. But when my appetite actually vanished, and for such a long time, I mourned it. Nourishment is not just about calories; it’s about vitality. I was not vital. There was no bloom in my cheek.

Then one day, I said, “Mom, I think I want some ramen noodles.”

I ate them. The whole block. They were salty and easy to swallow. They were fun to eat, those looooong curly noodles and the bullion broth was free of bits, chunks, vegetal matter of any kind. It is a benign substance, Top Ramen. There is nothing to avoid; there is surrender to simplicity. It is the anti-foodie food. The nutritional value is dubious at best, but dammit if there aren’t 400-something calories per block and at that point, that was 400 more calories than I was getting.

Every day, I ate ramen for breakfast, my sole “meal” of the day. I even looked forward to the moment when Mama would come in with my tray. It makes me cry to think of her now in her red robe, coming in with a chipper smile and the wooden tray with the big bowl. She always had a cloth napkin for me and a dinner fork. She’d place the tray on the big trunk we used for a coffee table and say, “Bon appetite, sweetie,” and I would say “Thanks, Mama,” and start to eat, slowly, bringing a forkful of noodles all the way up, high above my head. I’d tip my head back and open my mouth and the day would begin that way, looking up at the ceiling, at nothing but the moment and the noodle at hand. At that dark time, the moment was the wisest place to gaze.

My regards to Mr. Maruchan.

 

Dry Erase Bad News

posted in: Day In The Life, Sicky 1

This was my view around 8pm Tuesday night, except the date read, “Tuesday, August 13, 2013”:

It would be so much better in neon.
It would be so much better in neon.

My life is full of wonder and I often feel that I pay directly for it through physical suffering. Dazzled by the lights in the Chicago skyline every single time you look? For this awareness and understanding, you will pay…ah, yes. Keening in pain every so many days. Feel a surge of love for all humankind each time you board a plane and believe in the possibility of every individual, with compassion and without reservation? That’ll cost you…your colon.

Plenty of people have a beautiful life and don’t pay with their health, I realize. This is just my particular situation, my lot. And honestly, it’s okay. I’m okay with the trade. The good is just that good.

I’m home now, but haggard. More soon, and thanks to the well-wishers. The well fishers, well, it’s weird that you’ve been calling, but I’m glad you’ve been catching those fish.