Many of you will find improvements to my method, and that’s great. This is not about perfection. It’s about speed and making the masks as reliable as I can (thus, the vacuum bags and the spandex straps.) I know you brilliant people will improvise, too.
I’ve found www.findthemasks.com to be a good source of information about where to donate. You may have other ideas for that, too. Feel free to post reliable info on donation sites — and other tutorials! — in the comments. Share the video with people if you think the method is worth sharing.
No matter what: STAY HOME. Stay home and make masks or stay home and start a quilt. No matter what you do, please stay home.
I’m here tonight to share the final stage of the nervous breakdown I experienced early this year. The month-long illness was diagnosed by two medical doctors as a textbook “major depressive episode” and this major depressive episode was the worst thing that has ever happened to me, not the least because it adversely affected other people, too. But, as I can (and should) only speak for myself, I can only share my side of the story. That’s what this is.
This entry is so awfully long but I had to go the distance. We have to reach the bluer skies. I’m ready for those, aren’t you? Yeah.
So tonight, let’s close down the how and the why of the breakdown as best we can on a blog on a Sunday night. It’s as good a place and time as any: Who can totally explain why a black hole opens up in the psyche? How can we say for sure when these mental wounds begin and how long they’ll suppurate before they burst and run and require serious medical attention? It’ll take me a long time to understand all of this, but these installments of the PaperGirl Sunday Evening Post are an attempt. The 300+ pages of diary entries I’ve written in the past four months are attempt. Talking to my shrink is an attempt. Talking to my friends is an attempt.
That’s where I want to start tonight — I want to start with my friends.
In the depression, the days were short and dark. Nights were endless. Hope and vitality trickled out of me by the minute and it was so frightening to feel this and to see it, I was finally scared into asking for help. That’s how hard it is for me to ask for help: I have to be disintegrating before I’ll ask. (Yes, I have learned this is not okay and has to change.) Once I realized I was in fact disintegrating, I texted friends or called friends to come over. I wasn’t going to hurt myself, but I was afraid to be alone. In the deepest valleys of the depression, being alone was the most terrifying thing imaginable because to be alone was to disintegrate for sure; having another human in the room meant I might not go away completely, or as fast. When I asked my friends to come over, even though I was crying over the phone, I tried to make light of things, offering to get pizza and wine or suggesting we go see a movie. Here are a few of the things my friends said to me:
“I’ll be there in an hour.” “Absolutely.” “Laura and I are comin’ over, Mar!”
“I love you.”
“Want to join me and Julia at the Field Museum?”
“I’ll head over right after work! I love you! Luke is coming over right now!!”
There was pizza and wine a couple times, but the moment any of these angels arrived in my living room, it was obvious these would not be social calls. The situation was not normal. My friends could see right away this wasn’t hanging out with Mary; this was sitting shiva.
Because no one had ever seen me like this. I had never seen me like this. My friends are otherworldly creatures made of dopeness and love, so when they observed me, they were kind and brilliant in their approach to care for me. These women and men did everything right. They brought me flowers, sewed with me, sent me jokes, talked to me on the phone, watched my favorite movie (Tootsie, duh), brought over — for example — a bag of white cheddar Pirate’s Booty and a six-pack, read to me, stroked my hair as I lay my head on their respective laps. They were brilliant, full of compassion and love for me; they were creative in their tending to me and relentless in their desire to help. But it was very hard to know what to do. Would I know what to do if a close friend literally could not stop crying for weeks? Two of my friends spent the night, sleepover style, during the final, awful week. They were with me when the worst of the panic attacks (I lost count how many), sank its needle teeth into my head and began to eat and pin-pricked every nerve in my body until I shorted out. That afternoon … that afternoon was terrifying for all three of us.
I felt guilty for those panic attacks, for shorting out. I felt guilty I could not entertain my friends, or be there for them. Their lives didn’t stop because mine was falling apart. But at that time there was nothing I could give them. I could only cling to them and beg them to stay just a little longer, which they always did, and without reservation. This neediness added to my sorrow, too, because depression is a sonofabitch. Nothing is safe. It eats everything it can, including good intentions and one’s ability to communicate love.
Remember how I told you there were five things that took me down? I was so busy getting on with the bitter end, I forgot to finish that list. Let’s do that now.
The other two blows to my life were money related.
My business is PaperGirl, LLC. In order to keep my expenses and tax stuff at least a little organized, I have a credit card for PaperGirl, LLC. I have a high credit limit on this card. I pay it off faithfully every month. (I think I’ve missed one payment in four years.) It’s got kind of a high balance right now — but not more than four digits — and it’s this is because I’m waiting on several reimbursement checks. I hate having a big balance on the thing, so I pay it off in big chunks if I can.
This credit card is my only credit card. It has my name on it and my business name on it. Outside of that, I have two debit cards. I have one store credit card. That’s it. Pretty tight, right? Pretty buttoned up?
Fun fact: If you have a credit card for your business, it does not count toward your personal credit score. Did you know that?
I didn’t know that. But I learned it when I applied for a mortgage to get a loan to buy a condo that would let me have my dog. The credit people were like, “Uh … so, you don’t have credit.” And I was like, “Uh … yeah, I do.” When I looked at my credit score, though, my credit card was not factored in. Because it’s a business card, it doesn’t count toward my credit. Even though my name is on the card. Even though my business is me and I am my business.
Without a personal credit card, one that just says “Mary K Fons” on it, not “Mary K Fons PaperGirl LLC, guess who got denied for a mortgage? Upon getting this news, I knew I was trapped for probably an entire year. A whole year more before I could have a puppy, a whole year more in the same space, in the building that broke my heart. It would be a year because I’d have to get a dumb (and “high-risk”??) credit card and “build up good credit for a year” like I’m a freakin’ 20-year-old undergraduate. I felt sick. I felt like a fool. I felt like total and complete idiot. And I wasn’t goin’ nowhere.
Dog. Breakup. Doctor. Money. Mom.
Details about that last thing, that fifth thing, that Mom thing, are absolutely nothing I’ll be going into. All I can tell you is that Mom and I had a fight. We never fight. Ever. We have never, ever had a fight. And then we did. And that was the last thing that happened that sent me down.
For two weeks — whether or not my friends were with me — I could not stop crying. I’m telling you: I was physically unable to stop crying. The tears would recede for a little while but then I’d shake my head and put my hand to my forehead and cry, and cry, and cry. Sometimes I could talk. A lot of times I couldn’t. There were periods during the breakdown when I just stared into space with tears rolling down my cheeks. One of the scariest things is that after a while, none of the circumstances that had brought me so low were front of mind. After awhile, I wasn’t crying about Philip Larkin, or the doctor, or the money. I was crying because … oh, my god. Oh, god, it was all just so sad. All of it.
The bottomless sadness of being alive. The death that waits for each of us. The despair in despair itself wasted me. Joy was something that existed on a distant planet. Sadness made me sad. Being sad about the sadness made me sad. And so I went down, and down, and down, and then, when I did not think I could go down more, I would remember that I was trapped, because of the money thing, and I would go further down. Or I would think of the fight and I would go further down. And I would think, “If Philip was here and I could pet him, I would be okay.”
The sadness monster was eating me alive. I have never felt anything more painful than that.
Next week: How I’m doing now — so good!! — and what medication I’m taking.
Tonight is a list night, not a narrative night. The list is the list of reasons why this is the case. And so, rather than disappear; rather than put something substandard into the multiverse; rather than not write a list I feel ought to be written, the list.
Why The Latest Installment of The Story of the Breakdown
Cannot Be Posted At This Time
I’m in Seattle and it’s 10:43 p.m. This means it’s after midnight in Chicago, aka PaperGirl basecamp. The PaperGirl Sunday Evening Post has a deadline of midnight on Sunday, Central Standard Time (CST). Being in Seattle at half-past 10:00, Pacific Standard Time (PST) means my deadline is all mucked up, now. I blame Earth and its orbit around the sun. The point is that time is not on anyone’s side right now, unless you live in Seattle. (See rest of list.)
I ate fish and chips for dinner and my stomach is killing me.
The next installment — the installment this post is replacing — was scrapped. The reason for abandoning my work was that this particular chapter involves the people in my life who are the most close and dear to me and no matter how I massaged or clipped or edited the content in order to protect their privacy and respect their lives, it felt wrong to invoke their names in this story without permission. Even though what I was writing was laudatory and even worshipful of these people — my friends — there was a voice inside me that told me to ask first. I didn’t anticipate this happening because again: Everything I was writing was praise. But if you don’t want to have your life “out there” on the interwebs, it doesn’t matter if you’re being lambasted or praise; it’s all transgression. So I have to make some calls, first.
A few months back, Alex Anderson and Ricky Tims invited me to be on The Quilt Show. I taped my segments on Thursday. The moment my second segment finished, I zipped to the airport to come directly here. When I go home Tuesday, I’ll have a few days in Chicago before heading to New Orleans to be part of a conference at Tulane. With all this location hopping, it’s almost like I’m living in 2018, and that scares me a little. Exhaustion played a big part in the breaking down. In the months since, I have been wary of “pushing it”. I’m pushing it. In other words, I should go to bed.
There’s a special person in Seattle and he’s right over there. With ice cream. And two spoons.
In telling the story of my nervous breakdown at age 39, I’ve so far detailed in two separate posts the death of my dog and the breakup of my relationship. There are three more disasters to share with you because there were three more blows coming for me before the major depression reached its most gruesome stage.
Tonight, the third disaster, but a heads-up for next week: I’ll combine the other two into one last post about the wind-up. I want to get to the climax and the denouement and then I want to go back to writing about dryer lint. Those were the good old days.
All right, let’s do this. Let’s talk about my guts.
Some people get colonoscopies. People with colon disease get them a lot, maybe every couple of years. Every two years, I have to get a pouchoscopy because I don’t have a colon. Instead of a colon, I have a medically fashioned thing called a j-pouch, and if you’re interested in reading the story of my chronic illness, click the “Sicky” category and you can enjoy all that wacky content.
My insurance was canceled in 2017 (a post about that is to be found in the “Sicky” category, in fact) and the cancellation meant I could no longer see my doctors and surgeons. Because of grad school and work, it took me a long time to getting around to finding new doctors. Dragging my feet on this was bad … since I was due for a pouchoscopy. The pouchoscopy is done frequently with gimps like me because we’re at a higher risk for various bowel cancers than other folks. It’s also seriously important to check for inflammation inside my funky new body parts because inflammation could be a sign of pouchitis, which is basically Ulcerative Colitis (UC) of the j-pouch. Which would suck.
And then there’s this other thing that a pouchoscopy can reveal. A pouchoscopy can tell the doctor if you — in this case, me — might be exhibiting signs of Crohn’s Disease.
Let’s see how quick I can do this: If you have UC, it means your large intestine is eating itself alive but your small intestine is fine. With UC, you can have your entire colon removed, get an ostomy, and get a j-pouch and everything blows and it’s awful forever, but whatever. You’ve still got your small intestine and that’s something, at least.
If you have Crohn’s Disease, your large and small intestine are eating themselves alive. Crohn’s peeps undergo (often over and over and over) surgeries called “resectionings”. A resection is where a surgeon takes out a too-inflamed, too-ulcerated-to-save piece of your guts. There’s no total colectomy with Crohn’s like there is with UC, because Crohn’s folks need all the entrails they can get. Any piece could fail at any time, you know?
If a person like me, a person with zero large intestine (aka, colon) is diagnosed with Crohn’s Disease, this is bad. This is the worst thing. This is the hell thing. This is the thing that wakes me up at night, the thing that makes me bite my cuticles till they bleed. If I am diagnosed with Crohn’s — whether it manifested after all my other surgeries or if I was misdiagnosed 10 years ago, doesn’t matter — then I will eventually have to undergo resectionings.
If you take away enough small intestine because you have no large intestine to take from you will eventually run out of intestine. If you run out of intestine, you can still live. But you can’t eat. You’re fed intravenously. Forever. And because you no longer sh*t, they sew up your butt. It sounds sort of funny except that it isn’t funny.
When I walk into a hospital or a GI doctor’s office, I experience PTSD from all the needles and bags and accidents and procedures and trauma and despair that I’ve known in the last decade — and that’s just when I walk in. If I’m in the doctor’s office and my doctor looks concerned about lab results or looks concerned about what I’m telling her about how I’ve been feeling, I tremble and shake. I also begin to stutter? When I’m in the GI doc’s office and things get out of hand, it’s true: I can’t get my mouth to say words. It’s weird. It’s frightening. When I have to get a pouchoscopy scheduled, I just … I don’t want to exist in my head. That’s how bad it feels. Basically, going to see my GI doctor is one of the most awful things that can happen to me, even when I get a clean (for me) bill of health.
Guess when I had an appointment to see my GI doctor? Sometime in early January, maybe? Yeah, after my dog and my boyfriend disappeared, and right before I got denied for a home loan and right before a huge fight with my family. It was sorta right in the middle of all that. And remember: This appointment to see my GI doctor was an appointment to see a new GI doctor, because I lost my insurance. New smells. New hospitals. New travel times.
The new doctor needed me to go through my medical history there in her office. From the first words, I could feel the stutter was gonna happen. My eyes started pouring hot water. Trying to “get it together” made it worse. The doctor was patient, but she needed the info in order to help me. By the time I got to the end of the story, which concluded with weird symptoms I told her I’d been having for several months, I was … not good.
“I’m concerned, with what you’re telling me about your symptoms,” she said, after clackity-clacking on her keyboard some more. She looked grave. “We need to do the pouchoscopy you should’ve had six months ago. I’m concerned about Crohn’s Disease, from what you’ve been telling — ”
And I don’t remember what came after that. Wait, I do remember: The doctor told me to go upstairs to get my blood drawn at the lab and she’d follow up with me about scheduling the pouchoscopy “as soon as possible.” I nodded and shook her hand. With a kind of fuzzy, hysterical static sound in my brain and behind my eyes, I took the paper. I went up to the lab. I got to the door. My legs didn’t work. I turned around. I left the hospital. I nearly threw up in the Uber.
All I could think of as I slumped against the car door was feeding tubes.
When I got to my house, I went up to my apartment. I didn’t know that I wouldn’t leave for a while.
Welcome to The PaperGirl Sunday Evening Post. This is the third installment of a series examining the causes and effects of the major depressive episode I experienced in mid-January.
If you haven’t read the first and second posts in the series already, you should, since in this story, the chain of events is the point. After all, a breakdown is a breaking down of something — and things don’t tend to break down all at once. It’s a domino thing, a Rube Goldberg thing, but with sobbing and extended panic attacks.
After I got the news about Philip, the relationship I had been in for about a year ended, this time for good.
There had been a couple times over the course of the year when N. and I had decided to let it go. There were communication problems. Mistakes were made. But we were genuinely fond of each other. There was sweetness there, no question, and you may have heard that breakups are the literal worst. So, both times we called it quits we didn’t stay quit for long. After a month or so, we’d end up back at my place, ordering takeout and (re)watching episodes of Rick and Morty. It was not a perfect relationship, but it was tender enough. Pathetic, perhaps, that “tender enough” was enough at all, but we do what we do in the world.
It is unethical to divulge on this blog personal details about anyone else’s life but my own. This has always been my policy, so when I sat down today to write about the breakup, I approached it with characteristic caution. My first try was awful. I labored over several too-long, intentionally vague paragraphs that made no sense because I was avoiding saying what actually happened. I deleted all that, then spent another hour writing out exactly what happened in a “Just the facts, ma’am” kind of way. Not only was it sharing personal details about N.’s life, it was exceedingly boring. He said she said? Hell no.
Then it hit me: I don’t need to tell you anything about how it happened. You already know how it happened because we all know how breakups happen. There was terrible pain. People were hurt and then made the other person hurt. There was confusion. Anger. Irritation. Fear. Harsh words. Tears. Do the details really matter?
I don’t think so. Not here, maybe, and not now.
What matters now is that one bitterly cold, windy Tuesday in early December, I was trudging past the post office in the Loop, wincing as the ice hit my cheeks, but warmed by the fact that I had a cute boyfriend and a dream dog on the way. I couldn’t know that within a matter of days, I’d have no boyfriend and my dog was already dead.
Yeah, well, Chicago winter didn’t care about any of that. Heck, the polar vortex was still a month away. Shocked and aching that two major figures in my world had been excised most cruelly, I still had to keep trudging. I still had to go to the post office, the grocery store, and home to my empty apartment, even as the tears I cried into my scarf froze on my face. That actually happened.
It was bad. But at least I had my health. I did have my health, right? Tell me I still had my health.
But first: It was staggering to see the amount of love shown to me and the identification so many readers had with the first installment of the story. Many PaperGirl readers have experienced a major depressive episode, themselves. Many more have loved ones or friends who have. Nearly everyone is acquainted with depression somehow. How, exactly, can there still be a stigma around getting therapy or getting on (the right) meds to treat mental illness? Help me understand.
There were five events that combined to cause my nervous breakdown. The only way to illustrate the full misery is to illustrate the full misery piece by piece. When you’re having a nervous breakdown, time makes no sense — but let’s go chronologically, anyway.
It started with Philip.
If you don’t know about a little dog named Philip Larkin, click the “Philip Larkin” category tab over on the right hand side and you’ll see all the posts I’ve written about him. The story of Philip is long and it is about to get longer.
About nine months ago, a PaperGirl reader put me in contact with a Maltipoo breeder in Arkansas. This breeder was kind, certified, transparent, and above all, ethical. Filling out my Puppy Application took at least an hour to complete. I detailed the dog of my dreams, signed an agreement to be a good dog owner, and sent all that off with a not-insignificant deposit check. I was approved and put on the waiting list. The breeder said that two of her mama dogs whelp particularly small dogs, so this meant Philip’s mom would be either Ginger or Elsa.
“I think Ginger will probably have puppies toward the end of summer,” the breeder said. “You’ll be the first to know!”
But neither dog gave birth; the summer was too hot, the breeder said. No problem, I told her: I can wait. I had waited this long, hadn’t I? Besides, so much had been put in motion. Finding the breeder, getting on the waitlist, sending the deposit … Philip Larkin was getting more real every day. Soon, I wouldn’t feel so alone all the time. Soon, he would wriggle and roll and pounce on me and lick my nose with his tiny pink tongue … I’m comin’, Philip, I thought. We got this.
In November, the breeder emailed me that Ginger had given birth. There were five puppies in the litter: four girls … and one boy. This was it. That was Philip. I got the email while on a Quiltfolk trip and when I read about Ginger and the puppies to the girls in the car, we all screamed and freaked out and I flapped my hands and cried. Everyone hugged. Philip wasn’t just my dog at that point; we all wanted him.
When the breeder asked me if I’d like to see pictures of Philip as he grew, I told her that I would like that very much. It would be around eight weeks before he could come home, and this was the perfect amount of time to get things in order. I immediately began all the legwork for my petition. It hadn’t made sense to do all the stuff it before that, since a) I didn’t know if there would be a dog with this breeder; b) what if the dog wasn’t the right one, etc.; and c) I had looked at Illinois law and knew all the pieces I needed to proceed to get my companion pet in a no-dog building. I was ready for this paperwork.
The breeder sent pictures of Philip at about six weeks. He was exquisite. Downy and sweet. His dark eyes had that new puppy, sleepy, bleary look; he still had so much growing to do! His belly was pink and I liked to think I saw a lil’ milk gut.
Toward the end of November, I handed my building manager my 26-page petition, asking for permission to obtain Philip. This petition did not have to be 26 pages but like I was going to screw this up? Hell no. That slipcovered binder had a table of contents, a cover letter, letters from my doctors, a packet of resources (e.g., vets in the area, boarding outfits, etc.), information about the breed, information from the breeder, and all the blog posts I had written about my future pet, printed off. I wanted to make sure that my condo board understood this was not an impulse thing, that getting my small, hypo-allergenic dog was something I had been longing for and planning for for at least two years. I was following the rules. I was doing the work. I was going above and beyond.
On Black Friday, I bought a dog bed. On Cyber Monday, I bought a treat jar. At night, I actually fell asleep thinking of my dog. I had been feeling so poorly over the past couple months with bathroom stuff and it was a happy place I went to in my head.
On December 6th, I got a certified, one-page letter from my building’s attorneys retained by my building that under no circumstances would I be allowed to obtain a dog for the purposes of emotional support. Unless I had a service animal license, the answer was no. Adding to the shock, the lawyer wrote that the blog posts I included in my packet showed that I had tried to get my blog readers to give me tips on how to game the system. I am still not sure what blog posts she was reading, but I guess lawyers are real busy and stuff. She just got mixed up.
My heart got shot.
That’s how it felt. Someone pulled out heavy gun, placed the barrel flush to my breast, and shot me through my heart. For a few moments, I sat there at my table. I guess it was like in the movies when a gangster is playing cards or something, and he gets shot, right there at the table, and he’s still for a moment before he topples over. I looked down at the letter in my hands. I read it again. Then I put the letter on the table. And I began to cry.
That’s how the breakdown began. It began when my dog died.
This year of 2019 is pretty young, yet, but she’s old for her age.
Of the 11 or so weeks the year’s been alive, there were three or four in which I was fully out of commission. I’ve hinted around in the past few posts that something bad happened. I wrote about “the worst day of my life” a couple weeks back. Several times in several places I’ve mentioned pain in passing only to say “I’ll tell you later”, skipping stones on the surface of a deep, dark lake.
You could tell. You could tell because you know me, because you’re smart, and because I am a terrible liar. So it’s time to stop dodging; I’m not fooling you and besides, there’s only one thing I want to tell you. What I want to tell you is that I had a nervous breakdown. I’m way, way better now. But I caught a case, boy.
These days, we’re to call it a “major depressive episode” and there’s no doubt it was that. But when I put a name to the ungodly thing, I prefer to use the old-fashioned term “nervous breakdown”. When a gal is twisted up in agony of the emotional kind, lost to an extended panic, unreachable even to her most faithful friends, there’s something distantly (very distantly) comforting in claiming what’s happening is a nervous breakdown. It could even be glamorous, she tries to tell herself, all smelling salts and fainting couches, powders and slaps across the face. All this thinking really does, though, is suggest that because those thoughts exist, you must not be the only person in history who has gone through it. You have sisters in the emotional failure business, in other words. Congratulations.
Part of my hesitation in telling you until now is that it’s such a long, long story. Be patient with me as I roll it out. I may not go in order, and that bothers me but there’s nothing to be done, as one of the effects of a nervous breakdown — whether encroaching, actively having its way with you, or leaving its slime trail — is a lack of focus. I have found it extraordinary difficult to focus these months and getting things straight has taken herculean efforts. Losing focus is just one of the symptoms I’ve had; no two nervous breakdowns are the same. We’re all built differently, so when our buildings collapse, they can fall any which way: One person can get off the couch but her focus is dynamited while another stays mentally present but her body might as well be dissolving in lye.
Where was I?
The first phase of the breakdown hit in early December, but as I’ve looked at everything, it’s clear(ish) to me that I was headed straight for it, or it was headed for me, all year. Or maybe it’s been five years coming, or ten. Maybe it’s in my blood. (My father could tell you that it is.) In the next post, I’ll tell you how it all went down. It’s too much for me at the moment and I’m thinking of you, too.
Tonight, I’ll close with this:
We all get sad. Some of us get very sad and stay that way. You may be low because you’re dealing with brutal life stuff. Perhaps you are generally blue. Perhaps you are sad because it’s winter and the sky is flinty and the wind has teeth. You may be someone who lives with mild depression; you may take medication for it. However or whatever depressed state you may be in, it sucks. It really, really sucks to live in a long, grey cloud. You might wonder, on bad days, “Maybe I’m having a nervous breakdown”. I’ve wondered this in the past, on bad days.
It turns out, the difference between the grey cloud and a nervous breakdown is the difference between a sneeze and metastasized lung cancer. You do not need to ever wonder if you’re having a nervous breakdown. If you are having one, you will know. You will feel as though you are being eaten alive by a sadness monster, and the color will drain out of the world — except the grey, though it crusts over into something darker. The upside, however, to being eaten alive by a sadness monster is that at least it’s a monster. Depression is an all-over ache; a nervous breakdown is getting punched in the face.
Did any of that make sense?
Some might think writing publicly about a mental disorder shows I have neither shame nor sense. You’re right, but for the wrong reason. Sharing this is not scary for me. I don’t feel nervous, or worried — or brave, for that matter. This is my life and you are my peeps. Of course I’m going to tell you about the time I had a nervous breakdown.
But on Sunday, I had to go to the hospital. You guys, I’m so sorry. I left in the early evening, right when I had planned to sit down with you for a nice fireside chat. I was so looking forward to it. All day, I was. Proof is in this very moment: I’ve just walked in the door to my home after so many days and what am I doing? Even before taking out the garbage, even before putting in a load of laundry. Even — prepare for astonishment — before making tea … I’m here. Right here.
I’m still here.
The Sunday Evening Post was late, but it was always coming.
Not the whole thing. It’s the righthand side. The righthand side of my tongue hurts a lot.
The reason it hurts is because there is a sharp, thin wire in my mouth that has broken away from where it ought to be and every time my soft, wet tongue moves in my mouth, it scrapes against this sharp, tiny wire. Over and over and over, when I say words, or eat, or just swallow, this wire stabs or scrapes my tongue. This started on Friday afternoon and now it is Sunday night.
Well, I got half-braces. I got brackets/braces on my bottom front teeth because a) it was what I could afford and b) … Well, I’ll tell you later because it’s a good story. Anyway, I got six brackets and a wire on the inside of my bottom row of teeth and this situation is called “sublingual” braces.
I’m trying to be a trooper, but so far, my sublingual braces have not been fun.
This is the fourth time I have had a crisis (relatively speaking) with my sublingual braces. Twice, a bracket has popped off my tooth and I’ve had to go in and get it repaired. And twice now, the resin they melt onto the end wire (so that the wire can’t poke my tongue) has broken off, which is bad. I’m really, really hoping this is just the way it is with sublingual braces and that I don’t have a terrible orthodontist. I also hope I’m not the reason this is happening, but I don’t think so. I’ve been eating soft foods and being careful to take care of my sublingual situation. My caramel popcorn and hard pretzel days are over, if you will, and have been over since I got the dang things installed.
This pain in my mouth … It’s tyrannical. I can hardly think. The whole world is my mouth. My tongue specifically.
And there are people — Buddhists?? — who would say, “Mary, the pain in your mouth is an opportunity. This torture you feel, the way the whole world has shrunk and you can think of nothing but the pain in your mouth, this is a chance to really experience the moment; you can really be present because your focus is so focused on this sensation.”
What are you, nuts?!
You can have your enlightenment. I wouldn’t wish this “sensation” on anyone. My tongue is swollen. It’s been stabbed for two days, traumatized and raw. What’s more, I’m in Portland till tomorrow night, so I can’t see my ortho till Tuesday at noon. I’ve tried to stick wax on it (which has worked in the past) but the wire that broke and is poking is too close to the gum line and the wax won’t stick. I actually cried earlier tonight when, after the fifth time trying to coat the wire so that it wouldn’t poke my tongue, it slid immediately off. Again. I put my tongue down and the wire burrowed into my tongue once more. It’s starting to drive me a little bananas
We’ve all had bigger problems. But mouth pain is tough — and I am no Buddhist. Here’s hoping your tongue goes un-persecuted this night!
My post from a few days ago was a real cliffhanger — and then I kept you cliff-hanging. I’m sorry about that. There are a lot of spinning plates right now and sometimes I have to set a plate on the shelf for a second and rest my … what, fingertips? My plate-spinning stick? How does plate-spinning really work? Any actual plate-spinners out there, leave your remarks in the comments.
Also, this post has been incredibly hard to write for reasons that will soon be obvious. I’ve been dragging my feet.
Where was I, before time was up? Oh, right: Raw almonds for breakfast. If you haven’t read Part I, do that and then brace yourself for some extremely unpleasant (and personal) anatomic details.
The colon, also known as the large intestine, is a kind of shop vac: It sucks up the fluid from what you eat and drink so that the body can make solid waste. Then it holds onto … all that for a period of time and then, you know, you get rid of it. My shop vac was removed 10 years ago because it was, in the words of the surgeon who really messed up my surgery, “completely gone on the left side.”
What this means is that I don’t produce solid waste and never will again. I can eat things that are better for my condition and things that are way worse for it, but to go through a list of good vs. bad foods is a pointless exercise in many respects; what works only sometimes works and what doesn’t work for awhile suddenly isn’t so bad. But almonds are bad, full-stop. Which brings us to the second dignity-sucking feature of this tale and honestly, part of the reason I delayed in getting back to it. Let’s talk about fissures.
A fissure is a tiny, usually thread-thin crack between one thing and another. A fissure is relatively (very) narrow and not jagged; it’s not a rip or a tear, exactly. You can see fissures in rocks. Hairline fractures in bones would be a good visual. Fissures can happen in body tissue, too, and when they happen, it is bad. I had a fissure at the tail (!) end of my digestive tract and that is as much as I’ll tell you in terms of anatomy because we all know what I’m talking about.
My fissure arrived in late 2013 and was diagnosed as “acute” and “chronic”. Because I no longer have my shop vac, remember, I go to the bathroom a lot during the day and through night. Way more than most people, even with my J-pouch surgeries. If you have a fissure where I had one, the last, last, last thing on the planet you want to do is go to the bathroom. And at that time, because I didn’t know I was allergic (or had a reaction to) almonds, I was typically going 8-9 times a day and as many times through the night.
The pain of my condition bent my mind. It eviscerated my will, my fortitude, my spiritual condition. I squalled like a newborn. I babbled incoherently to no one as I pep-talked myself into going back to the guillotine, aka bathroom, over and over. The cramps were terrible. I had to go. And when I went, only an acidic trickle would come and I clawed my thighs until they were scraped and raw, too. It was a dark, dark time. And I told very few people about it. I didn’t tell you much about it, did I? Why?
It was so embarrassing. And the doctors said the fissure would likely settle down, though it will probably always be there, I understand?) A surgery that can be done as a last resort, but it’s not always successful; besides, the thought of more surgery in my GI tract — anywhere, anywhere in my GI tract — sent me into further paroxysms of despair, so I did not allow myself to see surgery as an option. Also, I am tough, Midwestern, stoic. Also, I tend to isolate. I’m a writer, by nature an introvert. And you bet I was depressed, for obvious reasons. And when you’re depressed, you just … You know. Nothing.
Look, the whole reason I’m telling this story is because I don’t recall anyone ever asking me what I was eating. And I think that would’ve been good. Raw almonds can cause diarrhea. And when you’re going to the bathroom as much as I was, the fibrous skins are really, really hard on a bottom. Why didn’t anyone help me put this together?
Before anyone gets arch please remember what I have written many times over the 12+ years of this blog: My doctors, surgeons, and nurses saved my life on several occasions and, if I can find new ones, medical professionals will help me live a long time. I’m not hating on doctors. I’m just bewildered, as usual, by the chaos of it all.
Good grief, let’s wrap this up, shall we? I rarely give advice, but here’s some I feel good about:
If you know someone with a J-pouch; IBD; Crohn’s; Ulcerative Colitis; diverticulitis, or any serious affliction related to the intestines, ask us about their diet. But — and this is so important — don’t tell us what to eat or suggest we do this or that. It’s so hard to be told, even by well-meaning people, that you’re doing eating wrong. (For example: The German and the Russian both pushed yogurt on me constantly and made me feel like a failure because I didn’t consume quarts of it daily.)
Telling a person, “You should eat this” or “[X] is a magic food for the gut” is different from just asking what’s in our diet. Asking us what we eat from day to day gives us an opportunity to think about it. Maybe there is something we could do differently. I mean, it’s crazy: If I have even a touch of almond milk or eat something like I did the other day that has raw almonds in it, it’s awful. But I didn’t know for a long time.
There you have it, my suffering GI Janes and Joes. Here’s the question:
“Shh … Shh. It’s gonna be okay. Deep breath. Why don’t you tell me what you’re eating, honey. Let’s start there.”
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, youdefinitelyknow. 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.]
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.
A couple months ago, I got a letter from Humana, the company with whom I’ve had an insurance policy since 2004. The letter stated that my individual medical plan would be cancelled as of December 31st, 2017.
No explanation. No apology. Just cancelled. See ya.
This post is not about healthcare policy. I’m not interested in debating about healthcare offered by the government, companies like Humana, or anyone/anything right now. Even if I did, I wouldn’t do it here. And I know — I am 100 percent certain — my beautiful readers are way too classy to spiral into goofy and/or cruel arguments about healthcare policy down in the comments section. I believe such conversations are best had on Facebook.
This post is about healthcare, though. As in, the care a gal gets with her health and how sometimes it’s frustrating in certain small ways.
Because of my cancelled policy — which, by the way, kept me and my family from going bankrupt over the years of so many hospitalizations and surgeries — I have to find all new doctors. None of the doctors who saved my life are in my new network. There’s really no way around it. Either I find an entirely new team who accept my insurance or I keep my doctors and pay completely out of pocket. Paying out of pocket is not something I can do unless I suddenly become a millionaire. I’ll let you know.
Doctors I am currently shopping for include: Anesthesiologist; Gastroenterologist; Family Medicine/General Practitioner; Gynecologist; Psychiatrist. And a phlebotomist, though they’re slightly easier to find.
It’s daunting. I’m haunted by the fact that the new docs don’t know me the way my other doctors at Northwestern have known me for so long. All my records are at Northwestern. For everything. All my docs, until now, were all on the same campus, using phones with the same first six digits. Until now, all my docs knew each other — or at least knew of each other or could get to know each other in the cafeteria or whatever. I feel like I had a medical home and I got evicted. And I didn’t even do anything. I was paying my rent every month. I was doing what I’m supposed to do. I was being responsible.
But this is how it goes, I guess. Whining won’t help. So I’m making appointments, doing my research. I don’t have time for this huge job, but what’s more important than to have a team in place in case/when my body revolts? When you have my health history, getting this stuff in place is important.
It stinks when you meet with someone who definitely won’t work out. It happened recently. It’s happened before, too, this particular thing, but it was harder this time because of my feelings of being in hospital/doctor limbo.
The gal who was entering the stuff into the computer was a nurse practitioner, I think. I’m not totally sure, but she wasn’t the first person who took me into the room to do the pulse-ox and blood pressure stuff. But she wasn’t the M.D. I was about to see, either, so I’m thinking she was a nurse practitioner, which is fine; I’ve worked with and been helped by many.
Unfortunately, after I went through the short version of the long story, this person did the thing that makes me feel bad, small, unseen, and empty. She did the thing that made me feel some hideous blend of despair and anger. After telling her about my j-pouch, my ostomy, my takedown, my second ostomy, my second takedown, my anemia, my fissure, and my fistula, she asked:
“So when was your last colonoscopy?”
My breath caught. I squeezed my eyes shut. I made sure my voice was steady before I used it.
“I … don’t have a colon.”
“Okay,” she said. “So …”
“I don’t have a colon,” I said, “so I don’t have colonoscopies. Anymore.”
“Okay, when was your last one, though?”
I’m no medical professional, but this question is irrelevant. As in, it has zero relevance to me, my situation, and my needs. But — if the lady insists — the last colonoscopy I had was the one in 2008, at Mayo Clinic, when I was admitted within five minutes of my arrival; the one they couldn’t complete due to the state of my large intestine being “totally gone on the left side,” suppurating and bleeding, bleeding and in tatters, hours away from bursting open and ending mademoiselle in a rather agonizing and undignified way, thank you very much.
Yes, I’m upset.
Because when you’ve got a doozy of a story like I do, going through it again (and again, and again) is hard. Bad memories come back. I do not use words like “trauma” or “flashback” lightly. When I say I have trauma from the lowest points of my illness story, when I say I have flashbacks when I go through the timeline, I mean it. But it’s 10 times harder when you’re going through it with someone new — because you’ve just lost all of your doctors — and you get through it only find you were not heard or understood. Because that feels like the person who was supposed to be listening doesn’t care. She might! She might care! But it doesn’t feel like it. And when you’re me, alone in a doctor’s office, talking about your belly, feelings are everything. Feelings are in charge.
Asking a girl nine years out from a total colectomy when her last colonoscopy was is like asking an amputee if she’s had any ingrown toenails lately. It’s like asking a blind person to look up at the chart and read the smallest line she can make out.
I don’t have a colon. It was removed. In its place, a bag. With the bag, the end of innocence. Please listen when I tell you these things, doc. Please don’t ask me about the organ they took out of my pelvis and threw into the hazmat bin before I woke up. I don’t have that piece of myself. I don’t know her anymore.
What I do know is that people are just doing their jobs. I know that. I owe my very life to the doctors and nurses who have cared for me. I’ve praised them often here on the ol’ PG. My new team may have the opportunity to save it again, we don’t know. I hope not?
So I forgive the gal with the computer and the long day, I really do. Who knows what was on her mind? And I’ve asked plenty of questions in my own life that showed I wasn’t listening or that I didn’t understand. No one does it right all the time. Not her, not me. Not the people who run insurance companies or governments, either, but I think those people should all try way, way harder.
Thank you, thank you, to the ladies I spent time with in Michigan yesterday. What a great day it was! The leaves on the drive up and drive back were stunning — but they had nothin’ on you, girls.
In other news, I did a lot of food prep in the kitchen this evening because tomorrow, difficult as it’s going to be, I will begin a round of my dreaded-but-amazing “reset” diet. I’ll tell you what I mean in a second.
My guts have been having a hell of a time this year because I’ve been eating with no regard to my intestinal health. Being so gimpy in the gut department, I’m supposed to avoid certain things and generally eat foods that have been stamped “anti-inflammatory.” Yeah, well, guess what my favorite lunch is when I’m zipping from one thing to the next? Pizza, of course — and we’re talking a cheesy, saucy slice from Pauly’s around the corner, not some kind of gluten-free, “mock” pizza made on a cracker and a prayer. (You think that’s gonna get this woman through two classes, an advising session, a trip to Michigan, and three writing assignment deadlines? Ha!)
Beyond that, I’ve been enjoying a falafel here, a coffee and almond croissant breakfast there, and so on. Not a lot of veggies. Lots of pasta. And oh, the sugar … Sophie gave me a whole bag of candy corn punkins’ last weekend and they’re gone, now.
The good news, I guess, is that at least I don’t see that my wack-a-doo grad school diet has gone to my hips; this is probably on account of all the walking and/or literal running I do every day to get to all the places to do all the things. The bad news is that intestinally-speaking, I’ve hit the wall. My tum hurts all the time and I’m so sick of constantly excusing myself to go to the bathroom. I take medicine for this stuff but my belly situation doesn’t have to be this tough. I can manage a few things, diet-wise, and make it better. So it’s time.
The last time I did the Specific Carbohydrate Diet (SCD) was a couple years back, when Yuri and I were in New York City. I was having a very, very hard time with my health situation at that point, so I did the reset and yes, it helped. Read this and you’ll understand what I’m beginning tomorrow.
I’m telling you about this because I need to stay accountable — and I also need support. Embarking on this “medicine” is not easy. When I wake up tomorrow, I’ll be waking up to a long week of nothing but hamburger, homemade jello, and homemade yogurt. And chicken broth. That’s pretty much it, and it’s not so fun.
When you bear incessant knocks and rumbles in your belly like I do; when you are exhausted/demoralized from the daily effort of endless bathroom trips; when you want to remember what it was like before you had a bowel disease that took you down hard, a tough diet doesn’t feel so tough.
I’m going to show you a homework assignment. For my Literature of the Senses class this week, we’re to write short pieces on the sense of taste. These are just one- to two-page writing exercises and I’ve put this together. I blogged about ramen noodles some years ago, and I did look back at this entry for reference, but it’s entirely retooled, as you’ll see.
It’s hard to write stuff and it’s hard to write about hard stuff. It’s hard to think about hard stuff that happened. Maybe I should go bake cupcakes or something. Mmm … Cupcakes.
Anyway, here you are.
As a young woman, many times had I fervently wished I could zap my appetite into nothingness so that I could slim down for the summer or whatever. It seemed so simple: Just don’t eat. I was never able to not eat, though, and usually not able to eat even slightly less. My appetite was stronger, in the end, than my desire to own smaller jeans.
But when I was dying in 2008 from failed abdominal surgeries related to advanced Ulcerative Colitis, my appetite really did vanish and it stayed gone for a dangerously long time, entirely without me trying. It turns out that having no appetite is a woeful, morbid thing.
My body knew my intestines were failing, so the appetite mechanism was doing me a favor by closing up shop. If nothing came in, nothing could leak out, internally. But my doctors and my family desperately needed me to eat, even a little, so that I could heal. If I couldn’t manage to start getting some nutrition, a feeding tube was in my future.
It was frightening to want nothing to eat, to snap my head away with a grimace when food came close to my mouth. It was alienating in the extreme that spaghetti with marinara sauce, my favorite food, did nothing to stir my appetite. I desired nothing. I craved nothing. There would be days at a time that I consumed only air and the dry skin on my lips as I chewed them whenever the doctors would call with test results, which were usually bad.
“Mary, honey,” my mother would ask, coming into the living room. “What would you like to try today?”
Every day, it was the same. The proposition of selecting and then trying to get food down was as exhausting as flushing my four IR drains, which had to happen twice a day.
“I guess ice cream,” I’d say, my voice barely above a whisper.
But when the Haagen Dazs hit my tongue, even if it were praline pecan or butter brickle, which in former days I would’ve devoured, I never managed more than two bird-sized bites before I had to set down my spoon and sink back into the couch, weary, baffled, and still unfed, the cream turning sour in my mouth. I was down to 118 pounds, 117, 116 …
We tried bacon. We tried mac n’ cheese. We tried bacon mac n’ cheese. We tried pudding, crackers, chips. Lasagna, Cap’n Crunch, sushi, tacos. Everything was revolting, everything was too much. I missed my appetite, which is to say I missed being part of the human race.
Then one day, when my mother asked me what I might like to try to eat, for some reason I blurted out, “How about ramen noodles?”
I meant Top Ramen, of course. The brick of noodles you get six-for-a-dollar with the flavor packet inside each plastic pack. Mom ran to the store and got a bagful. When she brought me a bowl of the piping hot noodles, for the first time in months, I felt hungry.
The cheap ramen was salty and easy to swallow. It was fun to eat, too, those long, curly noodles and the bullion broth free of bits, chunks, or vegetal matter of any kind. It is a benign food substance, Top Ramen. There is nothing to avoid, nothing to pick out. One can surrender to simplicity, to plainness. It is the anti-foodie food. The nutritional value may normally be in question, but for an invalid like me, the 400 calories of starch and salt were 400 more than what I was getting before and for some reason, my body accepted Top Ramen. I wanted to eat it and eating it did not make me sicker.
Every day, I ate the Chicken or Beef flavored ramen for breakfast (never Shrimp, gross.) The life-force noodle soup was my sole meal of the day. I even looked forward to the moment when my mother would bring it to me after I had had another interminable night on the couch, vomiting into my bowl, leaking sh-t from my ostomy bag onto the covers. Not every night was that bad; some were worse.
It makes me cry to think of my mother, there in her red bathrobe, coming in with a chipper smile and the wooden tray with the big bowl of Top Ramen for me, a cloth napkin, a fork, and a wide spoon. She’d place the tray on the big trunk we used for a coffee table and say, “Bon appetite, sweetie.”
“Thanks, Mama,” I’d say, and I’d start to eat, slowly, bringing a forkful of noodles all the way up, high above my head. I’d tip back and open my mouth, lowering the ramen slowly down onto my tongue and the day would begin that way, looking up at the ceiling, tasting the rich, savory broth clinging to the noodles. I would let it all slip down my gullet, hardly needing to chew.
You remember, don’t you, how I narrowly-avoided an ER trip — it has been known to happen — but got my iron infusions and avoided that at the eleventh hour? That was great. Less great is that my dentist, Dr. Tahbaz, confirmed that my ice-eating was probably the main culprit for my busted filling.
Pop Quiz No. 2:
Q: My dentist visit cost $250. Guess how much my iron infusions cost?
A: $3,600. After insurance.
I’m not sure what my face did when I opened that bill from Northwestern. Did it twist? Or was it flat? Did it buzz and fizz or was it numb? I don’t know because I kinda blanked out. I regained consciousness somewhere in the next few minutes, though, because I remember that I started laughing. Not because I was happy, or because anything was funny. No, I started laughing because I somehow kept opening mail and it somehow kept being bills for astronomical amounts: hospital treatments, tuition for grad school, condo payments. And I pay my own taxes, so I have to put money aside for that every quarter, which means that the money in my accounts isn’t really mine. I kept laughing to keep from crying or hitting things.
Life, man. A girl could just gnash her teeth all day over it all.
Except that she can’t. Because guess what else the dentist told her?
“You need to get a mouth guard. You’re grinding your teeth at night. A lot. Get a mouth guard. Today.”
It’s not earth-shattering news that I grind my teeth. I vaguely remember other dentists mentioning this to me. But either they were never really that concerned about it or I wasn’t listening, because no one ever did anything about my bruxism. Did you know that teeth-grinding has a name? It’s a real affliction/condition and it’s called bruxism.
Pop Quiz No. 3:
Q: If you’re a teeth-grinder (tooth-grinder?) and an annoying person at a cocktail party asks you about your theological, ideological, or political beliefs, how do you answer like a boss?
A: “I’m a Bruxist. Oh, look at the time.”
What I’m trying to get at is that I had to buy a mouthguard. The good news is that it was $25, not $250 or $3,600; the bad news is that I have a mouthguard I’m supposed to wear at night so I don’t grind my teeth against themselves but against a piece of inert plastic, instead. The news is bad because a) it’s sad I need protection against myself via the nocturnal manifestation of anxiety and existential angst, and because 2) mouthguards do not inspire a feeling of attractiveness, exactly. Mouthguards are practical, but they are not sexy.
But I like my teeth. Healthy teeth are sexy. So fine: I’ll wear my charming! clear! dainty! mouthguard when I’m sleeping alone. But should I have company, well, that thing is getting stuffed into the medicine cabinet before you can say “iron supplement.”
It’s been some time since there was a dispatch from The Pendennis Observer, the mini-magazine inside this blog dedicated to capturing Pendennis, my personal mascot/spirit animal.
As longtime readers know (Margaret Maloney, I’m looking at you), photographs catching Pendennis in the act of being the perfect stuffed animal are never posed or staged. The beauty of Pendennis is in the random gesture, his naturally floppy postures, those stick arms and legs all splayed out every which way. He’s just the best and he can always make me happy.
I had my pouchoscopy today and they did an upper sigmoidoscopy, too. Biopsies were taken from both ends. My friend Kristina came with me; I try to spread out the friend-hospital burden. K. was incredible. She brought me a coloring book and petted my head when I started freaking out. I get in that gown and I just lose it, you know?
Between Kristina, texts with Mom, and Pendennis’s little face — oh, and ice cream when I got home — the day turned out to be not so bad, not so bad at all.
One of the hard parts about not feeling 100% is that it’s advisable to rest, to stay put. I am terrible at resting and staying put.
On a physical level, it’s just plain difficult for me to settle down in a chair for very long. I’m up, I’m down. I sit down to sew and oop! Gotta get up for some ice. I sit down to write and oop! I’m up because I really should go get the laundry out of the dryer before I get too into things. I sit down to have my breakfast and oop! I’m up because I need salt. That kind of thing.
But that’s just the micro-level stuff. It’s hard for me to stay put on the macro level, as well. After a string of days laying low, I feel so off. I want to be leaping and leapfrogging and feeling fabulous but I feel logie and grouchy and antsy. It’s important to mention, by the way, my desire to leap and frog about does not mean I have a yen to go outside and catch butterflies or hike the Appalachian Trail or swim laps all day and then link arms with my friends and dance till the sun goes down (or comes up? I don’t know, I’m exhausted just thinking about all that.) Leaping and leapfrogging and feeling fabulous to me can be as simple as getting up and feeling good, then being productive at my desk and then maybe going to lunch.
When I can’t do these things, when doing laundry is hard not just because I’m iron-deficient but because I’m mildly depressed over being iron-deficient, it’s hard to get up over the fence.
Today, I did things that helped. It always starts with little things. I made a list that was manageable. Here’s what was on the list:
fold laundry (*good job for doing it yesterday!!)
go to the library to return your book
go to post office
answer pressing emails
And guess what? I did all of those things (plus a few more) and I feel better as I write this.
If my blog is ever of use, it’s because I can tell you what’s happening to me and then, if it’s happening to you and you identify, you won’t feel like you’re sitting by yourself. Maybe you’re not anemic, but maybe you’ve been sitting still and feeling weird about that or feeling bad about it. My suggestion is that perhaps you might like to make a short list. It worked for me today.
It’s not like I’ve been flat on my back. Well, okay. Today I was flat on my back.
My day consisted of 2.5 naps and 2.3 bowls of miso soup with udon noodles. The naps happened because I am spooky tired and can’t seem to keep my eyes open. The udon happened because my weak hemogoblins are demanding quick carbohydrates. Normally I stay away from the demon noodle, but these are desperate times. As a result of all this drowsy noodle eating, I feel sort of worse than I did when I woke up. I’ve got that sick-in-bed noodle daze thing going on, you know?
Not every day in the past week has been like this, but there have been long hours on the couch or in bed. It’s very hard for me to allow myself to spend hours this way, but what can I do?
Well, I can read. So I’ve been reading. Most notably, I read Angela’s Ashes in about three days.
If you were even dimly aware of pop culture in 1996, you know the book I’m talking about. Angela’s Ashes was everywhere, a memoir of author Frank McCourt’s boyhood in Limerick, Ireland in the 1930s and ’40s. McCourt wrote it when he was 69 after a lifetime teaching high school English in New York City. The book won the Pulitzer Prize. It won the National Book Award. Angela’s Ashes won everything there was to win. It was on the New York Times bestseller list for three years. Six million copies have been sold to date. Hollywood made it into a movie. There are a zillion translations. It’s canonical.*
As for me, I was in high school in 1996 and too busy blasting PJ Harvey records in my Honda CR-X to care much about a tale of a hardscrabble Irish boyhood, so I skipped it. And I never did get around to reading it because, you know, life and a zillion other books to read. And if I’m honest, I do get a little resistant to anything that popular. I’m not a joiner and honestly, could it really be that great?
Angela’s Ashes is a masterpiece. It is perfect. A perfect book. Angela’s Ashes is a work of art that became a part of me, page by page. I moaned out loud as I read, anguished to the point of pain at the crushing poverty, the death, the cruelty of circumstances endured by this family. My eyes stung as catastrophe after catastrophe befell them; my eyes sting now to think back to the characters I grew to love.
And I laughed out loud, of course, because Angela’s Ashes is funny. It’s so funny you can’t believe it. I was shaking my head at what I read, wiping tears from my eyes from the laughter (or was it the sorrow?) marveling at this man, Frank McCourt. Not only did he survive his childhood, he found the humor and joy in it, too — and then he wrote it down so well we can survive with him and spew our tea all over our pajamas because he’s so entertaining while we’re with him. (Ask me how I know about that pajama/tea thing.)
My experience reading this book is universal to the point of being uninteresting, I suppose. It’s safe to say that everyone who reads Angela’s Ashes is deeply moved. Oh, I’m sure there’s someone somewhere who tried to start an Angela’s Ashes backlash, someone who “didn’t think it was as great as everyone said it was.” We’re all entitled to an opinion, but I would have a hard time understanding how anyone could encounter that rich pageant of humanity and beauty and misery and reject it in any way. Frank McCourt made the world a gift in the form of a book. And the copy I read I checked out at the library, which means it was free.
All of that, for free. ‘Tis a great world, indeed, Mr. McCourt. Thank you.
*Read the book if you haven’t; read it again if you have.
I’ve been gone a few days on order from friends and my hemogoblins who told me to “take it easy, Fons.” Not posting for several days makes my eye twitch and my foot tap something terrible, so I’ll be back tomorrow even if I’m hunting and pecking at my keyboard.
Thanks to all for the well wishes. You’re pretty and you’re nice.
A couple years ago, I wrote about how I don’t freak out if I leave out a pot of soup overnight, how I’ll just shrug and stick it in the fridge and make sure I heat it up extra hot next time. I made sure to mention that there are strict limits to this “eh, whatever” kitchen rule and to never be afraid to come over for dinner, but a lot of you still thought I was weird.
This post is way weirder. But I’m going to write it because walking home from the library, I laughed out loud to myself just thinking about it — which was also weird, of course, but fun for the guys who hang out in the park by the library who saw me laughing to myself.
The precipitous decline in my hemogoblins over the past few months has, as I’ve mentioned, led to a steep increase in my ice consumption. As a number of you have so astutely pointed out, this ice-eating is a symptom called “pica.” Pica is “a tendency or craving to eat substances other than normal food, such as clay, plaster, or ashes, occurring during childhood or pregnancy or as a symptom of disease.”
There are many things to be grateful for: Not craving a glass of ashes or plaster is at the top of my list right now.
Ah, but frozen water counts as non-normal food and as my picamarades know, when you’ve got anemia and pica is upon you, nothing tastes as good as a big cup of really good ice. And you’d better believe that there’s good ice and less-good ice. There’s bad ice (e.g., cubes too large, over-frozen, etc.) There’s acceptable ice. There’s even ideal ice. As an almost compulsive ice-eater, I have become an ice connoisseur and I would like to now review some of the ice that I have sampled lately.
Though this is silly, I assure you: I devote a good deal of time these days to ice procurement, consumption, and evaluation. It’s unsettling to me how excited I am to write these ice reviews. But here we go.
Note: Ice evaluated on a scale of 1-5 on texture, flavor, melting rate, and ease of obtaining. All locations are in the Loop or South Loop of Chicago. In the case of chain stores, the management cannot guarantee quality/consistency.
My Condo: 4.5 My ice maker is broken (oh, the irony) but I have four ice trays that are awesome if I only fill them up halfway. If I only fill them halfway, when I pull a tray out, the ice gets melty in the trays and it’s really chewy. Picking ice cubes out of the tray like that feels sort of like eating a box of chocolates.
Hilton Hotel Cafe: 3.7
I sometimes take a shortcut through the Hilton if it’s cold or rainy and the cafe near the lobby has a self-serve soda machine: total score. I’ve taken a big plastic cup over there on several occasions for the semi-crushed, fresh-tasting ice, but I can’t get cocky. The lady behind the counter gave me the stink-eye the other day.
Pret-a-Manger, Michigan and Monroe: 4.7 This big-city chain cafe has the best ice ever. It’s thin. It’s crispy. It’s crunchy. The cups are big. I try to scam two full cups of ice from the folks behind the counter when I buy a can of Diet Coke but sometimes they say they have to charge me for a large beverage if I want one. If I’m feelin’ flush, I’ll do it. (Q: Has anyone ever planned a heist of an ice machine? Call me.)
Starbucks (Any location): 3.1
Starbucks ice is okay in a pinch, but it’s too hard. And you often get big bars of ice that haven’t separated into cubes. Do you know what I mean? I hate that. My hemogoblins hate it when that happens.
That One Falafel Place on Wabash: 4.1 An upset! This is almost as good as the crushed, almost snow cone ice that you get at a Sonic. (Now there’s some great ice — alas, no Sonics in the Loop.) Anyway, I like this place’s ice better than the shwarma.
7-Eleven on my block: 4.0 The guys who work there are very sweet and rarely charge me for a refill. They may be concerned.
It’s amazing to me when there are reasons for things. Most of the time, I am tempest tossed, continually bewildered to learn that effects have/had causes. My body is a mystery to me, even now, thirty-some years into having the one I was born with. I talked to my doctor today and all the strange things that have been happening to me for the past three months suddenly made sense.
First, the strange things:
My ice-eating has become almost compulsive. In the past two weeks especially. I crave ice all day. It’s so weird. I wake up in the morning excited about my first glass of ice. It’s never been like this. (I thought I was just being a weirdo.)
When I stand up, I have to hang onto something or stay very still for a moment and breathe, otherwise, I’ll stumble and maybe fall. (I thought maybe it was the medicine I’m on.)
I’m short of breath. (I thought I was just out of shape.)
Even thinking about doing a cardio workout makes me tired. (I thought I was just lazy.)
When I sleep, I am out in .2 seconds. When I wake, it’s like emerging from the grave — I have no sense of the night, no sense of having slept, no sense of feeling rested. (I thought I was just behind on sleep.)
My limbs are weak-ish. (Any ideas?)
Diet Coke is back in my diet because if I don’t drink a couple throughout the day (with ice, of course), I can’t make it. (I thought I was just more addicted to caffeine than usual.)
Without foundation and a good amount of blush, “washed out” didn’t quite describe my complexion. (I just thought I was a white girl who had just been through a Chicago winter.)
I’ve been blue. (Who isn’t?)
Now, a quick pop quiz, remembering that I call my “hemoglobin” my “hemogoblins”:
Q: What’s a normal hemogoblin level in an adult female?
Q: How low does an adult female’s hemogoblin level need to fall before she needs a blood transfusion?
Q: What’s Mary’s hemogoblin level right now?
This explains everything. I’m so tired. I haven’t been posting as much as I usually do because I’m just so tired. I try to make time for everything but it’s like working through mud, sometimes. There’s so much to do, and I was consciously and subconsciously doing the Have To’s and not all of the Very Much Want/Need To’s.
The reason I’m not getting a blood transfusion right now is that my insurance company won’t approve it unless I hit 7. The plan, therefore, is to get an iron transfusion approved and do that first. Me, I’d rather have the blood. Let’s cut to the chase, gentlemen. But it would probably be unwise to twiddle my pale, anemic thumbs until I dip lower and then do my best vampire impression, so I’ll take the iron infusion when they give the go-ahead. That should help. It’ll also cost $750 a pop, even with the insurance, and it usually takes two. Super.
Can I tell you something that is very honest?
I had a moment today after I got the Anemia Update and I wished I was at 5. Because if I was at 5, maybe I could be admitted for a night. Maybe even two. And I could just rest. No one would question it. Not even me.
That’s messed up, I guess. But sometimes, it’s like… It’s like you just need to get off the bus and have someone come in and take your vital signs and help you to the bathroom and bring you gingerale in a little cup with a foil lid.
A few weeks ago, I confessed that I had been putting off seeing my GI doctor out of fear of what she would tell me. Many of you sped to my digital side to give me a digital hug and say, basically, “Go see your doctor, kid. We like you. We want you to live.” It was the encouragement I needed to make the appointment and keep it. Thank you.
Well, I went to see Dr. Yun yesterday. But I wasn’t alone.
Regular readers of the ol’ PG know my friend Heather. I have mentioned her many times, perhaps most notably in a series of posts last summer when she had her first child, Julia, and I was present for the birth. (There were also frequent Heather sightings while I lived in NYC and D.C., as I stayed with her and her delightful husband when I was in town for business or holidays; there was also this post about the Dairy Queen blizzard.) Those who loved classic Quilty know Heather that way, too; she was assistant producer on the show four out of the five years we made it and appeared as a guest on the show many times, too.
There are many qualities that I admire in Heather. She is generous, as evidenced by the number of times she has given me keys to her home. She is dependable, the proof there being the years we worked together with nary a hiccup. Heather is funny. She’s a great designer. She’s clearly a wonderful mother (more on that lil’ rascal Julia in a minute) but there’s something I admire most in Heather and I’m blinking back a tear or two as I type this: Heather is steadfast.
Forgive me for making it about me for just a moment, but to properly describe Heather’s steadfastness, I need to first describe what it’s like to be my friend. It’s not very…even. I’m out of town a lot, for one thing. When I finally get home from being among a ton of people, I’m in desperate need of recharging. As an introvert, this means that I need to be alone for awhile, otherwise I’m no good to anyone, including myself. Sometimes, I fall in love with a boy and move to New York City, but then we break up and I move to Washington, D.C. and when I get home, I start graduate school. Crafting chains of events of these kinds is a specialty of mine, but I end up with few opportunities to go to matinees or maintain a weekly sew day, for example. And then there’s the writer thing. Writers are weird. Most of us have some measure of social anxiety — yes, anxiety with people we know and love very much. I’m raising my hand, here.
But Heather is true. She loves me because I’m Mar, I think. She sees my wild life and it’s okay with her. Even if we don’t see each other for awhile, when we get together, it’s great. We’re peas n’ carrots. I’ve told Heather things I haven’t told other people. I’ve relied on her. The fact that I know I can absolutely rely on her says much about how she loves me, the very nature of Heather. Her steadfastness makes the world a better place. Now, she knows I love her fiercely — I’m not completely hopeless at friendship, I just show it in different ways, cough, cough — but she does such a better job at staying connected and I am grateful.
Yesterday, I dragged myself out of bed, dragged myself to the train, dragged myself up to the 16th floor of the Lavin Pavillion at Northwestern Memorial. But though I was anxious and gloomy, I made it. I made it because Heather texted me that she and Julia would be there soon. Sure enough, moments after the nurse left me alone in the exam room and just before I started biting my cuticles, I heard a soft “knock, knock” on the door. I jumped off the exam table as my beautiful friend pushed open the door with Princess Julia in her stroller. They had come to be with me in a place that feels to me like a dark forest.
Forests are no match for true friendship and the sweetness of an eight-month-old baby. That child is incomparably adorable. Julia has discovered her tongue (wonder of wonders!) and sticks it out with glee as often as possible. Heather looks great. Between chatting with her and watching Julia rocket around the room on all fours, I had no time to be afraid. When Dr. Yun came in, I answered her questions without crying even once. And suddenly, the appointment was over. Honestly, it could’ve gone on longer and I wouldn’t have minded at all.
Heather and Julia came with me for my blood draw, too. Dr. Yun wants several tests done; I’ll go under for those. Really, that’s the scary stuff. The tests and the news afterward. Heather and I have already talked about another rendezvous.
I made an appointment with my GI doctor for Monday. As in, Monday, April 17th. But I called the hospital that morning and rescheduled it for Thursday, but on Wednesday, I called and cancelled it. Did I want to reschedule it, the lady asked?
“No, no. I’ll call back in a few days,” I said, and hung up and rubbed my forehead a while.
I will call back. This week. I really, really will do that and I’ll go because it’s important. It’s like, the most important thing. But I just couldn’t do it this week.
I was too scared.
I’m scared to go see my GI doctor because I’m afraid to get bad news. I’m afraid to endure the tests that she’ll want to schedule because that means scopes and needles and stuff. I’m not ashamed to tell you that I have a prescription for an anti-anxiety medication that I can fill when I have to go do this kind of thing. That’s how freaked out I get, that’s how bad it feels, that’s how potent the fear is on account of the past.
One has to psych oneself up for these things, I told myself on Monday morning, and I was not properly psyched up. As Thursday approached, I was slightly more psyched but recalled that in the past, I have done far better at GI appointments when I have a friend go along with me. But I don’t like to bother anyone, for one thing, and for another thing — second confession — every time I think about asking a friend (or one of my sisters) to go with me to a GI appointment, I start crying because… I don’t know. I just have all these memories of being sick and all the loving things people did for me during the worst of it. And I just start hiccuping with these deep, breaking sobs and I don’t even know what that’s about. But I feel sad and I don’t want to ask anyone to do that.
Confessing to you that I cancelled my appointment twice and promising that I won’t cancel again is my attempt to be accountable. I’m going to schedule the check-up. I’m going to phone a friend. I’m going to take care of my health and I’m not going to be afraid. Or maybe I’ll be afraid, but I’ll do it anyway.
I get worried when I feel physically bad for more than a day or two (I’m on Day 3) and then I have a crying symptom on top of that.
A few years ago, my surgeon looked at me sternly and told me sadness was a serious symptom to which I needed to pay attention. She didn’t mean that I was depressed and that depression was serious (though I was, at the time, mildly, and of course depression is serious); she meant that in her experience, when Mary Fons gets sick, Mary Fons doesn’t always run a fever but she oftentimes gets very sad and bursts into tears multiple times a day.
Today, I burst into tears four times. Okay, five, because I just did it again.
Do the crying jags mean I’m sick not with a cold but with something else? My guts have felt strange lately but it’s so hard to tell. I’ve changed my diet recently; is that why I feel bad? And certainly there are perfectly good, totally reasonable and seemingly unrelated reasons to cry, cry, cry:
— My aunt is very sick and the fate of my cousins is uncertain
— I feel a terrible nostalgia for my sisters and my mom and Iowa
— People in every part of the country learn how to quilt on public television and I have taught people how to quilt on public television and I learned how to read with help from public television and my president wants to kill public television and this makes me so sad I cannot bear it, I cannot
— I must admit that I feel overwhelmed by work and school
May I ask a favor?
Is it okay to come to you and just burst into tears? I strive on the ol’ PG to offer content of substance. I strive to be precise and topical and entertaining and thought-provoking and I desperately want to make you smile. But I almost didn’t write to tonight because I feel so terribly sad and then I thought, “Well, maybe that’s why you ought to write.”
For the past hour, I have been working on a lovely post about the beauty of friendship. But I have to stop. Because I am sick. I am sick with a terrible cold. My nose hurts. My body aches. My lips are dry and cracked. I am hot. Then I am cold. Then I am sad. Then I feel sorry for myself and I say, “Stop feeling sorry for yourself, Mary,” and then I say, “It’s too late!” and then I say, “Stop talking because it hurts the head.”
So I have to stop, now. I think it’s going to have to be good enough that I found a painting by Winslow Homer called, “The Sick Chicken.”
Do you remember the last time we talked about Winslow Homer? I had so much to say about this painting. Those were good times, weren’t they? I could breathe back then. I could run and jump and play. But no longer. Now, I shall perish on this couch, wads of snotty kleenex strewn all around, the remnants of my veggie burger drying out on the coffee table. Woe, woe!