The Last American Girl?

thoughts, comments, opinions, insults

a lesson and a commitment

Worthless. Piece of shit. Garbage. Loser. Fucking stupid bitch. Ugly cow. Lazy asshole. Freak.

Ugly words. Words I use – to describe myself. There usually isn’t a day that goes by that I don’t use at least one of those. If Hermione* hears me, she responds, “don’t talk about my best friend like that.” I pause for a second, and then shrug it off. I wick away kindness like overpriced workout clothes promise to wick away moisture.

It's pretty much just like this.

It’s pretty much just like this.

I don’t know why I feel like those words belong to me. I don’t know if I come by it naturally, or I grew this way. Some days I don’t want to know. I have crazy in my family. Dark, hateful, mean, crazy. My mother, I’m fond of saying, is batshit crazy. My sister is a sociopath (not officially, but I think it fits). The women in my family make me uncomfortable. They scare me. (With the exception of my beautiful grandmother.) In college, I liked to joke that I was going to get the Cabbage Patch Doll seal of authenticity tattooed on my ass, as proof that I came from somewhere else, that I was made of something different. Even though I try to be evolved and understanding, in the back of my mind, “crazy” makes me suspicious. I don’t understand it simply as a disease that hurts the affected as much as those around them. I see malevolence, a desire to inflict pain. I’ve cut my sister out of my life. I refuse to acknowledge her existence, going as far as excluding her children (most of whom I’m afraid have either inherited or absorbed her personality). Because I have recovered a meaningful relationship with my father, my mother comes as part of the package. I handle that by reducing her to a joke. I say that I had a chupacabra in place of a mother. I’ve come to terms with the fact that she is either unable or unwilling to own our past, and that I will die before I receive a sincere apology from her. I’m fine with that. Most days.

I’ve mentioned my ongoing health issues before, and lately, I’ve watched my teenage niece struggle to recover from injuries she sustained last year, and I’ve noticed similarities between us. Mostly though, I’ve stayed quiet, not wanting to hear ‘jokes’, or a rushed “oh I don’t think so” from her parents, as if any similarity between us is something to hope against. I get it, I feel that way about my mother and sister, but it sucks knowing someone feels that way about you. The words I opened with, the ones I call myself on a daily basis, are so no one else has to. It hurts less if I acknowledge it before someone else does. I don’t want anyone to figure it out, but I’m afraid they will, because to me, it’s so obvious. Cleaning the house the other day, I came across a journal I was using a few months after Husband and I got married. It was page after page of me constantly urging myself to do better, even though I was exhausted, “before he figures out he married a disgusting, pathetic loser.” Two months after we’d gotten married. Reading it made me sick to my stomach. I threw it out. Today I found out my sweet, funny, intensely adorable niece has been diagnosed with Anxiety Disorder. Naturally, I looked it up. Um…a bit more than similarities there… You know what I didn’t do? Mentally dismiss her. I didn’t think she should ‘suck it up’ or ‘get over herself’ or ‘stop being such a loser’. I didn’t hate her for being ‘fucked up’ the way I hate myself.

Lizzi (and others) are involved with 1000Speak, a movement to bring some compassion to the world en masse, instead of letting the Dark and the Sad overwhelm, like it’s been threatening to do of late. And I’ve wanted to join, but I’ve stopped myself half a dozen times, because I literally didn’t think I was capable of finding compassion and writing anything worth reading. But if the past two days have shown me anything, it’s that even if I can’t give it to myself, I recognize that the same issues do not make a girl stupid, or idiotic, or weak. Understanding, empathy, and most importantly, kindness, matter. So, consider me signed up. I’ll find something to say.

*Not her real name, but I can’t keep referring to her as my unofficial sister/best friend, and since I won’t use her real name (which is really pretty), I’ll give her one that reminds me of her, because she’s brilliant, and brave, and a tremendous support to those she loves.

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three years, and a new year for hope

transitioning away from the hideous orange

transitioning away from the hideous orange

It has been precisely three years since I became a homeowner. In those three years, I have gotten married, waited impatiently to hold my newborn nephew for the first time, moved away from my home with the essentials (kitten and laptop) in hand, leaving house and husband behind to care for my grandmother in her last days, buried my grandmother, put my cat to sleep, been struck with a mystery illness that landed me in the ER half a dozen times, tasted butterbeer at the Wizarding World of Harry Potter, hand fed and patted a wild chipmunk, discovered the local farmers’ market, and fallen in love with yoga. It’s been a strange three years. Precisely at this moment three years ago, I was just finishing painting over the horrible pumpkin soup orange in the living room with a light blue-grey as I waited for my then-fiancé to arrive with the first load of boxes.

As we waited to ring in 2015, a friend and I were texting and she said, “God I hope this year is better than 2014 was.” A simple sentiment I’m sure many other people share, but it really struck me in that moment: we are so lucky we can’t see what’s coming. The next day while talking to my husband, I said, “can you imagine? If this year is even worse than the last couple we’ve had…God help us. If I knew what was coming, I’d never get out of bed.” Had I known I was going to get a call some morning in April, knowing from the very beginning it was going to result in me sobbing as I cradled my dying cat in my arms while my husband sat next to me, tears streaming down his face, waiting for me to nod and say “okay,” I would have thrown my phone in the river. Had I known from the very beginning that when I walked into my grandmother’s house at midnight that Memorial Day weekend that it would be the last time I’d ever see her truly herself, I probably couldn’t have enjoyed it.

I remember, in the weeks leading up to her death, Grandma would say, “oh. I hoped when I woke up that today would be a good day. Instead it’s another lousy day.” I didn’t know what to say when she said that. I didn’t have the heart to tell her I thought all her good days were behind her. That’s an awful realization and I never blamed her for not being realistic. She needed the hope. Three years ago, as I was painting our brand living room, I had hopes our home (and our lives) would look very different three years down the line. Different in the good way, not, mattress and box spring on the floor, because the old, crappy bed frame we had broke and we still haven’t replaced it, or front door still unpainted, or hole in kitchen ceiling due to leaking pipe issues different… They say ignorance is bliss, and they’re right. Without it, hope can’t exist.
To three more years of home-owning, and 2015 – the Year of Hope.

Ten Things of Thankful: The Grandma Edition

I.

I am thankful for Grandma, the only grandparent I really got to know, for hanging around for ninety-four years, and for forming my definition of   ‘grandparent’ with nothing but good memories and love.

Grandma's watch

Grandma’s watch

 

II.

I am thankful you were the first person I introduced ‘the guy I just had dinner with’ to. You were in bed, your teeth were out, and you didn’t care. You were happy to be involved in my life. A few days later, you deemed him ‘a nice boy’ – you were right. I am thankful you were able to be at my wedding. I’m thankful for the gift you gave me at my bridal shower: beautiful embroidered pillowcases that your mother made. You told me she would have wanted me to have them, and to be sure I used them. (I will never use them.) I’m thankful for you letting me have the watch your parents gave you for your eighth grade graduation, and I’m thankful for the look you had in your eyes when you realized that was the honored piece of jewelry I wore on my wedding day. As much as you couldn’t “imagine why (I) want that old thing,” it meant so much to me. It doesn’t matter that it doesn’t work anymore, I can’t tell time anyway. And I’m thankful you shake your head every time I say that to you, because it means you don’t think I’m possibly that dumb. I am, but it’s nice you find it hard to believe, anyway.

III.

I am thankful for the hours you spent reading to me before bed when I was little. For Little Women, Jo’s Boys, and always, always caving to me when I whined and cajoled for “just one more chapter.”

IV.

I am thankful for all of the cookies we baked together, the pies, the popcorn balls, the cheddar cheese biscuits, the custard, the corn meal mush, the cinnamon-sugar pinwheels from scraps of leftover pie dough, and especially the raspberry turnovers. I am thankful for all the Thanksgivings and Easters I spent with you in the kitchen, always working, always proud of what you were able to do.

The Sorry game Grandpa had as a kid.  "Sahh-ree!"

The Sorry game Grandpa had as a kid.
“Sahh-ree!”

 

V.

I am thankful for your snarky, incredibly insincere “sorry” which will never, ever be forgotten in my home. For the way you would predictably shake your head and cluck every time I’d make an asshole move and send you back to Start, rather than advancing, and how you made me feel close to the grandfather I never got to know when you’d say, “you’re just like Grandpa. If he could go forward ten or back one, he’d go back one just to spite you.” For your dumb joke anytime I asked you to play Monopoly, “unless it’s a whole crowd, it goes on forever. It’s not Monopoly, it’s monotony.”

VI.

I am thankful for you trying to allay my fears when I was a child. “Everybody dies,” you’d say. For making me have a pragmatic view of the world, and for instilling in me that my time with you is finite (and precious).

VII.

I am thankful for the way you never complained about your situation, but talked about it matter-of-factly. You didn’t mean for it to happen, but the way I view the world as an adult has much to do with how you’ve lived your life.

VIII.

I am thankful for your many colorful turns of phrase, “my mouth tastes like the backside of a barn door,” “falls into a shithole and comes out wearing a fur coat,” and “Christ Almighty, what now?” being some of them.

IX.

I am thankful that you put up with my bullshit when I was in college, suffering from mono, and working the late shift. I’d call you at 11:30 at night, and you’d answer the phone, teeth out, sound asleep, sounding like a deranged owl. “Hullo? Hullo?!” “Hi, Grandma. I was just calling to say ‘I love you.’” Your voice would immediately soften, and I could hear you smiling. “Oh, hello dear, I love you too.”

X.

I am thankful for the time you broke your ankle when you were 75, and allowed me to be your nurse. I wrapped your ankle every day. I bathed your foot every day. That realization finally hit me a couple days ago, and I laughed as I sat on your bed and said, “Grandma, what the hell were you thinking, letting a nine year old wrap your broken ankle every day?” “Well,” you said, “you were a smart cookie. You knew what you were doing. I trusted you.” My god, Grandma. Do you even realize how powerful that is? I am thankful for the things you said to me when Husband and I visited you over Memorial Day weekend, and I was helping you into bed one night: “You ought to do this for a living, you know.” “Do what?” “This. Work in an old folks’ home. You’d be good at it.” “Hah. No I wouldn’t. I’m only good with people I like.” “No, you would. You have compassion.” I am thankful for the past three weeks I have spent at your house, helping to care for you. Even though it breaks my heart every minute, to see how much pain you’re in. I’m thankful for the rare moments you’re able to crack a wry smile when I joke with you. I’m thankful for the couple minutes you looked peaceful when I had you hooked up to Bose headphones and my iPod, while you listened to Anne of Green Gables, a book you once read to me, with technology loud enough and clear enough so you could understand the words. I’m even thankful for the truly awful Tuesday night we had, when you were confused, and in so much pain, you screamed at one point you wished Grandpa would find you and welcome you in death. I’ve known since I was little I was going to have to let you go at some point, and even though I don’t want to, I know it’s selfish to want to keep you here like this. I’m thankful for hating every minute of the day lately, knowing you’re getting ready to leave, because it means you have been an extraordinary grandmother. And I’m lucky you’re mine.

I’m thankful for you. I love you.

at the intersection of discouraged and exhausted

The suicide rate of people with your condition is very high.

When I heard those words last year, August 13th, to be exact, I almost let a laugh/choked sob out. I stared at my new doctor (Dr. M., allergist) and felt relief. “So I’m not just being crazy?” Smiling, he shook his head and said, “No.”

He told me what my problem was. He wrote out some prescriptions. He told me I’d be significantly improved by the weekend.

I walked out of that appointment buoyant.

On Friday, I was in the ER. Again.

Friday afternoon my sister in-law came over. She brought me a fruit cup and a movie from Redbox. People tend to get a little worried when they call you, and the conversation mostly consists of you in tears. She knew it wasn’t going to be good. But when I went to the door to let her in, she stood frozen on the doorstep and stared. Finally she exclaimed, “Oh my god, you look like a horror movie!” (Note: If you find yourself in a similar situation, comments like that don’t really help. If a person looks like they belong in a horror movie, they feel worse. They’re aware of what’s going on, trust me.) “Thanks,” I mumbled, and hobbled away from the door. She washed some dishes, she made my bathroom shiny with a spray can of Scrub ‘n Bubbles. She cleaned some fruit according to my new doctor’s specifications: in vinegar first, and then regular water. I think she even did some laundry. My niece and baby nephew came along too. I wanted to interact with my nephew, but couldn’t. I tried to relieve my conscience by admitting I didn’t feel like I could hold him safely. That I felt weak, shaky, and like I could barely stand upright without having visible tremors.

We waited for my husband to come home.

My sister in-law called him on my cell, told him she thought I should go to the ER. I spoke with him. I told him it “wasn’t good,” but I was also hesitant to go back to the ER. He knew the reasons why, that the hospital was a revolving door, nobody could seem to find any answers, and it was an expensive waste of time.

A couple hours later, when he got home, I conceded. I winced and gasped as I exchanged my tank top and pajama shorts for a more socially acceptable t-shirt and shorts. I sat in the car twiddling the dials, first the vent, then air-conditioning, then heat, constantly readjusting. No matter what temperature the air was, it hurt. In the waiting room, I sat hunched up, clutching my knees to my chest, rocking back and forth. Emergency rooms are special hells for those suffering, but not suffering enough. You can end up sitting there for hours, wanting to black out, zone out, or do anything to make your focus shift, even for a minute, but you can’t. You listen intently, you prick your ears like a hunting dog for the click of a door opening, the squeak of Crocs, the swish of scrubs, anything that might signal it’s time to go into that coveted empty room. The one that might hold answers, or relief, or at least some solitude where you can be in pain a little less publicly.

I was given IV fluids, Benadryl, Percocet, and an injection of Decadron.

I didn’t feel much better, but the Percocet brought my pain level down enough so that I was able to doze off a little bit. After a couple hours, the nurse walked in and exclaimed, “Much better! You’re much improved, good!” These pictures were taken about ninety minutes after that…would you like to know what much improved looks like?

If you think that hurts like hell, you're right.

My entire body was like this. Front and back. If you think that hurts like hell, you’re right.

This. This was all over my body, front and back. This is several hours after steroids had been administered.

This is several hours after steroids had been administered. Note my hand, that’s how I looked, everywhere.

When I saw Dr. M. five days after my ER visit, he increased one of my prescriptions and added a Decadron taper. My skin improved over the next couple weeks. I also felt like my brain was encased in cement, I couldn’t focus, answering simple questions felt like it took two hours. To say I felt like I was in a fog is an understatement. I was also nauseated/starving most of the time, usually at once, and I felt like my sense of taste had completely deserted me. Nothing tasted right, everything tasted like roofing shingles, or worse, but I was so ravenous, I was ready to eat the paint off the walls.

Fast forward a couple months, I’m off the Decadron taper. In addition to the fun side effects I’d already experienced, I discovered neuro angioedema. Fun stuff. Neuro angioedema is a fancy name for when something brushes the back of your neck and you experience pain you’d only associate with a severe beating. Sitting there helpless as the pain creeps all the way up your clavicle, neck and head, as well as down into your shoulders is a great feeling. Double the fun if you experience that while your husband sits next to you and watches you swell up before his eyes. It also leads to this:

Another unmissable ER experience, mid September, 2013.

Another unmissable ER experience, mid September, 2013.

So after Dr. M. and I decided to let my leaky blood vessels rest, and to lay off the steroids for a while, I progressed into this. My husband and I have named these lesions “cigarette burns” ’cause we’re obvious, and that’s what they look like.

"Cigarette burns" mid December 2013.

“Cigarette burns” mid December, 2013.

When I was days old, I had ‘skin problems’ and I was taught to live with it. The pediatrician told my parents I was allergic to eggs, and the conversation died there. I avoided eggs. My skin never improved. I started eating eggs, it didn’t make a difference. When I was twenty-three, I cut soy out of my diet, within a month, I had healthy skin. You could look at me and never be able to tell I’d had debilitating eczema. Shortly after, I met the guy I would end up marrying, and immediately after we started dating, my skin went to hell again. He cut soy out of his diet, and my skin went back to being healthy and perfect. Sometimes I would have a run-in with soy, my guy would end up feeling resentful of my diet restrictions and he’d sneak a little soy…I would know. It wasn’t in my head. It’s not like I saw him eating soy and worked myself into a reaction. Even if he flossed, brushed, and used mouthwash and waited a couple hours, with one kiss, my body would know. He figured it out and stopped ‘testing’ me. My skin went back to perfect.

In January 2013, I started having episodes of severe abdominal pain. The first time it happened, I wound up in an ambulance at one o’clock in the morning. Severe pain, vomiting, always accompanied by the worst stench ever – sulfur.

Doctors couldn’t figure it out, any of the times I went back for the same complaint. Gallbladder? Acid reflux? No idea?

I got referred to a gastroenterologist for an endoscopy. It came back clear. Additional testing for my gallbladder was recommended, the results came back okay. I was referred to a surgeon to possibly remove my gallbladder but he laughed me out of his office. The gastroenterologist suggested I start taking probiotics. The abdominal pain vanished. But my skin started acting up. That was in April.

In August, I saw Dr. M. for the first time. He said I was suffering from Dermatitis Herpetiformis (celiac disease). He prescribed Dapsone and Doxepin. I went home and tossed every single thing in my house that contained wheat or gluten. Every dish was scoured and sterilized, the toaster was gone, produce washed with vinegar (to kill any errant proteins?) before being rinsed with water. We don’t eat meat that has been fed grains anymore. I haven’t eaten any pork products since last summer, I haven’t eaten red meat since December, I’ve barely started eating (organic) chicken again, but only with every scrap of fat carefully removed first. I haven’t eaten shellfish since I was four and almost died. I haven’t eaten soy in years. I have painstakingly removed wheat/gluten from my life (and my husband’s) since August. I avoid oats because of the possibility for gluten contamination, and all beans and peas, because they’re in the same family as soy. Last year we got our own chickens, so I can eat eggs that are ‘safe.’

I am not better.

I’m wondering if part of my problem is undiagnosed lupus? It would explain a lot of things in my life, that I haven’t even been able to share here, but I don’t ‘need’ it to be lupus, or celiac disease. I just want help. I want to be better. I want to be in my twenties, and actually be able to live. I want my husband to come home at the end of the day to a wife and a life that I don’t feel ashamed of, for dragging him into this miserable, unsolvable hell.

I went to my primary care physician today, asking to have my medical history looked over again, to see if there is anything that didn’t make sense at the time that could be revisited, to pursue any ideas concurrently with celiac disease. I got the usual: not a clue, wow that’s tough, best of luck to you speech that I’ve been getting from different doctors and specialists and emergency rooms for more than two decades.

The suicide rate of people with your condition is very high.

I’m not sure what my “condition” is, because I’m doing everything ‘right’ and it’s not helping. And I’m not suicidal. But I get it. I really do.

If any of this sounds familiar, if you’ve ever known someone go through something like this, please share. I’d love to know what helped.

a new way to look at food and personal accountability

Michael Pollan, author of Cooked, talks about the industrialization of food.
If the whole clip is too long to commit to, the first four minutes are pretty incredible.
(Maybe, just maybe, being allergic to so many things is something to be a little grateful for.)

hello, dearest

You are my sister. You are my best friend. You are a member of the very (very) select group of people that I trust, admire, and love with my whole heart.

And whether or not you’re super thrilled about your birthday this year, I am so, so fucking grateful today is your birthday. Even though the Universe screwed up, it would’ve screwed up even bigger without you.

Supposedly, a picture is worth a thousand words, so this video (surprise! haha) should be better, right?

Happy Birthday. I love you.

P.S. You wanted me to post what I wrote about my sister on here…I did, just not what you were expecting.

origin of the last american girl

I love this. I love every bit of this so much.

I grew up on Green Day. I fell in love with them through my brother. My brother, who incidentally, has no clue who Green Day is. I worshiped him when I was little, and part of that hero-worship included me hanging around him as much as I could (something every teenage boy hopes his little sister will do, I’m sure). A lot of that time he’d have the radio on. During this, “Good Riddance” was blowing up on the radio. It’s almost two decades later, and that song still reduces me to tears. So by the time I was starting my first year in college, American Idiot was released and like “Good Riddance,” was blowing up. To me, American Idiot was food. I craved it. It was sustenance. I was disillusioned with my personal life, and the nation. I was angry. I was optimistic. I was confused. I lived for that album. The day an acquaintance met me on the grassy hill on campus and handed me the burned copy of American Idiot I’d begged her for is seared into my memory. I ran (as well as one can with raging mono) back to my room and shoved it into my stereo. It didn’t come out for years.

Later, I got to see the show on Broadway. Front row. It was everything I’d hoped, and more. It was the result of every single media image, feeling, nuance – every frustration and joy I’d experienced – that we, the American Idiots, had gone through together. The only thing that would have made it better was if the audience had been a little less of the staid, we-behave-on-Broadway type, and had a little more of the yes-this-is-us energy.

In a coincidence that completely underscored the show, as soon as the performance ended, we weren’t allowed to linger. I wasn’t able to buy the cast album on my way out. I was herded, along with several hundred other theatre goers, politely and forcefully, out the doors. Outside, I noticed police tape blocking off areas I didn’t remember being blocked when I walked in (but I can be astonishingly unobservant sometimes, so I chalked it up to that). It only took about a minute before I realized I might’ve been a little hasty passing things off on my one track mind. I pulled out my little silver brick of a cellphone. I called my parents, thinking my mother (who thrives on public spectacles of despair and destruction, and has the news on constantly to feed that) might have seen something. She had no idea. I texted my brother (that brother) and gave him my location, and asked him if he could find anything out. He called less than five minutes later,  “suspected explosive device(s) discovered in car in a parking garage.” A parking garage smack dab in the middle of where we were. While American Idiot and 21st Century Breakdown don’t encourage or glorify violence or “acts of terrorism,” walking out into an evacuation area only served to drive the album’s point home. See? We don’t live in our parents’ world. We chewed on teething rings in front of the television, watching Sesame Street and war criminals. Our classes were interrupted by bomb threats, or worse.

My boyfriend and I kept walking. We passed a huge intersection cordoned off, the area was a light show with police and ambulance lights. Bomb sniffing German Shepherds were walking around on tight leashes held by officers with tighter faces. We stopped for a moment, about twenty feet from the crowd. The crowd that doubled in size in minutes, pressed up to the tape watching the show. I couldn’t believe it. This is what we’ve become…we’re the generation that grew up doing math homework with the news media blaring in the background: weapons of mass destruction, another soldier’s funeral picketed, the third “trial of the century” in a decade, school shootings, genocide. We’re told to be wary of the slightest hint of a threat to “our great nation,” there’s no such thing as too suspicious. But when there’s a palpable threat to our safety, we press our abdomens against the tape, stretching it, thinning it, seeing the action unfold. Health officials and some chefs are warning us of “palate fatigue,” chiding us that we’re putting too much salt on our food and not realizing it because our taste buds are worn out. We need to retrain our palates into healthy parameters, they say. Maybe what I saw that night was Threat Fatigue. Like the wall of TV screens onstage, each blaring something, trying to compete with the others, to out-sensationalize the rest, that’s part of the conditioning we’ve grown up with. Things are bad now, and they’re getting worse. Except, it seems like nothing ever really gets much better, or worse. Whatever it is fades away and we don’t have time to let it sink in before it’s replaced with a new threat, catastrophe, extremely dangerous situation

Like the characters in American Idiot, Tunny, Gloria, Whatsername, and Jesus of Suburbia, we’re the generation that doesn’t know what the hell is going on, but that isn’t going to stop us from trying to make it better.

– The Last American Girl