The Flood

After seven months of nothing, I hear about his horrors
And start bleeding from my sex.
And no, I don’t write this for him, he doesn’t get to have this.
No one gets any parts of me anymore, I scream
at the email asking my opinion in a political survey

“You’re not a poet,” the voice in my head whispers
Well no fucking shit, I answer, but the voice doesn’t get this, either
This is mine all mine, now that the flood has finally
Washed over me and covered me in blood
My blood, her blood, and her blood, and her blood…

I bruise without knowing why, blood gathering under my skin
Finally escaping now, overwhelming me with its thick
ugliness, suffocating, making me dream of places I don’t belong.
I’m a reptile, I know, slithering through the swamp, a snake.
I should be so accustomed to blood

I fall down for no reason but to remind me to keep slithering
Because it feels good down here, slithering and devious
Ready to be a witch’s reagent, part of a scheme, to make blood
My best friend, blood the color of my lips blood the color of my pain
The flood might kill me but I’ve died before, over and over again

And I’ll rise again, as I always do,
different and more hideously frightening
Less ready to please the world and more ready to tell the terrible truth
Less interested in being told about my own predicament
“Oh, do educate me on my own pain and my own body again,”

Try it. Because I’ve already drowned in it and I’m not afraid of blood.

When We Were Young

Didn’t I glow? Not in the way most young girls glow. But the way I glowed. With my own peculiar kind of beauty. Dark hair and porcelain skin and pale eyes and black clothes and cleavage that belied how saggy those boobs were underneath. All those corseted goth clothes kept it tight. I was beautiful.

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Long before you stole all my roses you got my glow. And not just that, you got my hopes. Dark red lips and big green eyes and eyeliner, that, okay, I’ll admit, was a little shaky, but I look at this young woman and I wonder how she was ever self-conscious. I wonder how you saw the flaws in her. How you couldn’t just fall at her feet when we were young. I look at pictures of you and it’s not how I remember. I see the dopey haircut, the acne, the smile that shows too many gums. I don’t see the things you saw, like how you thought you were fat, but I don’t see the things I saw, either. I don’t see the kind face. I don’t see the loving eyes.

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I was funny, too, doing the Kliq point in my goth gear. You never gave me credit for being so goddamn funny. I’m still funny, you know. I make my friends laugh all the time. I didn’t have friends when I was with you, and I was never allowed to be the funny one. In this picture, you thought I could stand to lose some weight, and I did, too, which is why I’m covered head to toe in clothes, but god, look at that body? Kim Kardashian wishes she came by that booty and hips naturally. No silicon injections there, baby! If you’re young, I promise you, someday you’ll be twenty years older and you’ll look at pictures of yourself and you’ll wonder why you hated your body. Or why you were young during Heroin Chic instead of when Big Butts were popular. But this was an insufficient body for you. I called you by nickname for you, “Muffin.” when we were at the gym you dragged me to and you got mad. I had no idea all the working our in the world wouldn’t work. I had a progressive fat disorder called lipedema. You should have appreciated this. This was as good as it gets, Muffin.

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This is wrestler El Dandy, at one of the many wrestling shows we went to. He’d just finished groping me in this picture. You convinced me it was funny. This was the night we’d gone to Hooters with you and your friends before the show and you treated her like such garbage, like a sex doll, that I had to sneak in after pretending I had to pee and apologize to her and slip her an extra tip. You made me think it was funny and cool to be groped by a wrestler. How many women have you groped as a joke?

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This is me and my puppy Charley, maybe a day or two after my father died. The best thing you ever did for me was suggest I get a dog after my father died. He spent fourteen years with me. For three of those years I could not figure out why he stubbornly refused to be house trained. When we broke up, he was magically house trained, overnight. Then I put the pieces together in my head. When I’d come home from work and you were still there, he’d spend so much time outside when I’d take him out. Pooping two or three times. Peeing five or six. Charley was a pee and poop and go back inside dog but every time I came home from work and you were in the house, he acted like he’d been holding it all goddamn day. You can’t even take care of fucking dog, let alone a relationship.

Image may contain: 2 people, including Alison Hébert, people smiling

Here I am, just a couple years after you. thriving. With a friend. The glow is back! I have a lot of them now. Because I no longer have to choose between friends and you anymore. Or between family and you anymore. I no longer have to wonder if I make a female friend if you’ll ask “Is she cute?” because you wanted to pressure me into a threesome I didn’t want. I no longer have to brace myself for every physical flaw you detect in me. I don’t look at beautiful as I do in any of these pictures anymore. Illness has ravaged me, my immune system is slowly eating my brain and spinal cord, lipedema keeps catching up to me, I am going through early menopause and I’ve had the same migraine for like nine months.

But when I lived in Portland, the first place I lived that was away from you, I was as happy as that woman in that picture. And now I’ve learned how many women you’ve hurt and it breaks my heart that I knew things about you and I let it happen, even though I know it’s not my fault and there was literally nothing I could have done. You had this big booming voice and I had nothing. No one would have listened. No one listens to women, no one believes them. You emotionally abused me. You isolated me so all I had was you.

I don’t just have you anymore. I have me. I have my friends. I have my family. I have my dogs. I have a Bachelor’s degree. I have a Master’s degree. I have Multiple Sclerosis, yes, but I also have a good reputation and people trust me to be a good person. People love me for who I am, not whether I shave my legs or whether I have a fat ass or whether I’m “hotter than the last girlfriend.”

I’m sitting here tonight in excruciating pain because pain is all I live with, and I still feel luckier than you. Even though I went into a fit two months ago and shaved my head because the migraines made my hair too heave, even though I wear pink glasses now to fend off the light for migraines, even though I’m not the beautiful girl in any of the above pics on the inside, as Taylor Swift said, when it comes to men, “I’m doing better than I ever was.”

PS: GET OUT OF MY FUCKING CITY. YOU HAD THE WHOLE UNITED STATES AND YOU MOVED TO PORTLAND? GET THE FUCK OUT OF MY FUCKING CITY. I DON’T CARE IF I DON’T LIVE THERE. IT’S MINE.

You Stole All My Roses

They’re my favorite flower you know.  Maybe not so imaginative, but I love roses.

Glass Candle Dialogue: Lady Olenna, Queen Margaery, and Ser Loras ...

And you took my roses, you took them, my sweet roses of my favorite house on my favorite television show, and you stomped them into the ground like you did to all the other women on that show, because like women, like, everything beautiful, that show reminded us that everything beautiful only exists to be soiled and violated and made to scream, so they took my roses and they killed them all.  They stole my roles and my hopes for a story with and ending that celebrates powerful women and LGBT people.

rosetwitter

You see this rose on twitter and you know you’re about to see a hot garbage take.  You’re about to see a so-called leftist who hates Democrats more than they hate Donald Trump.  Who hates women more than sexists, who hates minorities more than racists.  You, Rose twitter, You took my roses and you put them next to your twitter handle and now my beautiful flowers stand for people who have told me they hope I get raped or murdered or that my MS gets word or that I have migraines forever.  The people with the roses next to their twitter handle stole my friends and family and turned them into cruel people, or at least people so complacent to the cruelty directed toward me that they feel no embarrassment or shame or need to be in my life because they have never made amends for it and never will.  I refuse to be the first to apologize the ones who stole my roses from me.

You all harassed me endlessly, for hours on end, going back five years now.  You caused my cousins and friends to treat me like garbage and never apologize.  They never will apologize because I’ve given them strong hints and they ignore them.  They love their cult leader more than me.  They stole my roses and they stole my friends and family.

The Rose City: Portland, Oregon | Shot from the Pittock Mans… | Flickr

You’ve stolen every part of my identity since we met so many years ago, when you were just some redneck who didn’t have any fucking culture and didn’t know shit about shit.  I was happy to introduce you to cool new music and moves and things you never knew about in your backwater down.  I kept silent when you stole my jokes for your “career,” such as it was at the time.  I took it when you dumped me for “cheating” when I was writing a story, and you were the one who was actually cheating.  And then the screencaps you’d asked me to make, days before, they were the fucking chick you were cheating on me with, not for you, and you still to this day refuse to admit you cheated, like I’m some kind of moron.  I let you get away with acting like a feminist icon now when you made I don’t know how many “make me a sandwich” jokes during our relationship.  I watch girls fawn over you and your blue check mark on twitter and wonder if they know that every time I made a female friend, your first question was “is she cute?” because you spent almost five years trying to pressure me into a threesome I didn’t one, and how that made me stop wanting to make friends at all.

I could talk about how you treated me like the most disgusting creature to walk the other because I decided to stop shaving my legs, or because I gained weight, which turned out to be the result of a genetic condition I couldn’t do anything about.  How my weight was the topic of conversation of so fucking many of our conversations, how it seemed to be the sum total of my fucking value to you.  How you are such a goddamn big deal in your industry my friend who was going to let me expose you via podcast backed down.

I could have told them about the time I came home from work and you were supposed to be in the middle of your shift and I asked you why you weren’t at work and you said, “I’m too good to wait tables.  I’m a writer,” and I wondered just exactly how we were going to explain that to the fucking electric company.  Or how I supported you through writing your shitty First Male Novel, in which The Girlfriend was based on me and stole the story of my father’s death without permission but was really about how the main character was in love with the chick you pined over since high school who never gave me the time of day.  And how you dedicated it to Hitler?  Because you were being that fucking edgy?  And I had to somehow explain that to my fucking family?

Or I could have told him how, as recently as three years ago, over a decade after we broke up, you felt the need to stick your dick in someone very close to me’s ex-fiance, and she felt the need to tell me all about it while I was on steroids in the middle of an MS relapse, and how you told her all about how back when we were a couple you were powerfully attracted to her and wanted her so badly but she was with them and you were with me and had to hold yourselves back like some sort of demented redneck Jerry Springer bullshit?

I’m not naming your name, bitch, and you’re goddamn lucky, because in 2020 I’m settling scores, but did you really have to come to my fucking city?  My Rose City?  My Portland?  My home?  The place I plan to go to when my time comes and this disease has taken too much from me and it’s time to die?

Somehow you’ve been successful, and it’s so goddamn undeserved.  You did none of the hard work.  you failed up, like the men in Game of Thrones, like every presidential candidate.  You didn’t go to college, you didn’t pay dues.  You don’t tend to any gardens but you pluck up all the flowers and take credit for their beauty.

Margaery and Olenna Tyrell spent years trying to gain power by being good to the people and winning their love.

The women who ran for President in 2020 were hardworking, qualified, competent, and would do a better job than basically all the men.

I spent seven years getting a bachelor’s and master’s degree on fully scholarship and funding only to end up too sick to work.

Men waltz in and get to live the lives women have to scrape for and often never get.

Give me back my roses, all of you.

Six Months of Migraines

feeling like this for six fucking months straight and they tell me to be nicer.  don’t curse so much it turns people off it’s not fucking professional it’s not nice don’t you want to be nice?  sure you have people harassing you from the the psychotic Sanders camp for having the nerve to be a Democratic and you feel like this but it’s on you to be the graceful one all the fucking time.  it’s on you to apologize every goddamn time.  it’s on you to be the one who is the good guy.  it’s on you to smile and act like the sunshine doesn’t make you vomit.  it’s on you to not “get worked up” over the fact that disabled people in this pandemic are less likely to receive health care.  it’s on you not to be angry and scared about it.  it’s on you to accept that the world sees your life as less valuable. it’s on you to realize that the far left doesn’t care that their “revolution” will kill you, any more than the far right wants me dead for being a leech on society. it’s on you to accept it all, because disabled people are disposable, and most of them, it’s their fucking fault right?  because health is a marker of value in this shithole fucking country.  it’s on you to “see the other person’s side of things” when the other person doesn’t live in constant pain, has more money, has more of a life, has  more of everything you will never fucking have and for six fucking months you have nothing but pain in your life, constant unrelenting fucking pain and people have the nerve to give you a fucking lecture on your behavior

you couldn’t live a goddamn day in my body

you’d be begging for fucking mercy

My Therapist Dumped Me Today

Did I think she was very good at her job?  No, not really.  In fact, I was ten minutes into our session, telling her how badly she done her job, when she tapped the fuck out and decided she couldn’t take it anymore.

Fucking weak.

I sat through entire bullshit session last week, trying my level fucking best, for an hour of her idiotic drivel, while she kept saying, ignorantly, “you’re a sociologist, you know,” why clearly not having the first fucking clue what sociology actually is, sat through her bullshit church metaphor, and even did my stupid fucking homework on how positive affirmations can somehow magically cure my MS and prevent the disease from somehow being progressive and degenerative?  I don’t fucking know.

It was stupid.

I told her it was stupid.

I figured she try a different approach.

I had called her office last week in crisis, but she wasn’t in, and she didn’t have voicemail set up to leave a private message, she didn’t have email set up (thought ever other doctor in the practice has one set up), no way to leave a private message.  I told the stupid bint of an assistant that I’ve been panic attacks—

And Sally, Sally, the dumbest assistant to ever walk the fucking earth, told me, an MS patient with a compromised immune system, in the middle of a global pandemic, to go to the fucking emergency room if I’m having a panic attack!

The fucking emergency room!  Sure Sally, why don’t I put a pistol in my mouth while I’m at it?  It would probably be a less miserable way to go than slowly drowning in the fluid in my lungs over a matter of weeks.

My neurologist was not pleased.  I was told Sally was getting a talking-to.  But bringing up Sally was the last straw, and then I was dumped.  Never mind that she gave me mind-bogglingly bad advice, that if I were not a smarter person I might have taken, and right now might be dying of COVID-19 because fucking Sally doesn’t have a functioning fucking brain, my therapist, who is supposed to be on my fucking side, chose Sally’s braindead advice over the crippled, immune compromised person in crisis.

She told me she was referring me to ‘higher levels of care’ and believes I should be seen ‘several times a week.’

I’m too crazy for her.

I have had nothing but traumatic experiences with therapy in the entirely of my life and I made that clear to her in meeting one.

Now she wants me to go ‘several times a week.’

She wants to torture me.

Like hell will I allow another doctor to do this to me.

I had a migraine all day yesterday in anticipation of this appointment.  I spent nine waking hours of anxiety worrying over it.  It was over in ten minutes.  I am terrified of doctors.  They might be other people’s heroes.  They are might nightmares.  For every one good doctor I’ve dealt with, I’ve dealt with twenty sociopaths.  I’m a professional patient.  I’ve dealt with that many doctors.

Me?  Therapy?  After over thirty years of misery?

We’re done.

Competition

There might be some new competition for the worst year of my life.

2020, you’re off to a bang.

1998, you were a festering piece of shit and I thought you’d hold the tiara forever.

2016 gave it a good run for its money.  Ditto 2004.  1997?  Nightmare.

But 2020, one day before the Ides of March, you’re the big winner.

Pictured in red: me, who looks a lot like Julius Caesar lately

My mother says I’m pushing people away.  I think it’s because I stopped taking the hormones that made me nice.  The hormones that made me nice, unfortunately, gave me migraines every day for four months.  I’d rather be a clear-headed bitch than a bitch in agony.  I have fifteen prescriptions.  I can’t really add anymore because then I think my liver will explode?

Turning into enough of an angry bitch that I accidentally forget I’m supposed to not tell my deep actual truth about things?… or being in so much pain I wanna fuckin’ die?  What a sad story.  Here, enjoy this picture of Eric Roberts kissing me.

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Seriously if you’re ever at a random con, and Eric Roberts is there, and you are a fan of even one Eric Roberts movie (in my case, Best of the Best), spend the ten bucks and do the photo op. Lowkey the best fun I’ve had at a con.  Everyone in line was like, “I’m not a superfan or anything, but I liked him in ______.”  And the thing is, Eric Roberts has done so many freakin’ movies, everyone had a different answer.  And then you went around this little tent and suddenly everyone emerging was like,

“WOW!  Eric Roberts is amazing!  He is the coolest guy EVER!  I am now going to BUY ALL HIS MOVIES!”

And everyone in like was like, “what? Really?  This was a $10 autograph.”

But then it was my turn and I wheeled in on the crip scooter I rented for the day and Eric was all, HOW’D YA EARN YOUR WHEELS!  And I said, “Oh, I have MS.”  And he hugged me and said, “oh I’m so sorry darling, but I think you’re simply amazing!”

LOL, What?  Why?  Who cares?  HE WAS SO NICE!

He shot two pics.  A normal smile and the kiss on the cheek.  I emerged from the tent also raving about Eric Roberts.  “He really IS THE BEST OF THE BEST!  JULIA WHOMST?”  I asked the lady printing the photos if I could buy both.  She said it’d be an extra ten bucks.  About ten people around me flipped out and exclaimed, “WE CAN BUY BOTH?!?!”  And then everyone bought both.

I GOT NOTHING COACH

I didn’t meet Eric Roberts tonight.  I met a Nazi.  I could sense it when I looked at him.  His aesthetic.  His hairstyle.  The way he carried himself like he felt himself a part of the master race.  The way he laughed when I stumbled, because cripples stumble.  I looked at him, because I never know when to shut the fuck up and said,

“Are you a Nazi?”

Within half a breath, he was inches away from my face, a bottle of pepper spray an inch from my face, a smirk on his lips.

And then he winked.

I’ve never been so scared in my entire life.

BLESSED PHOTOGRAPH: SEE THE NAZI GETTING PUNCHED, GET GOOD FORTUNE FOR THE REST OF MARCH. SORRY CAESAR.

I walked away, but I did tell him to go back to Germany.

I turned and said, “you were really going to pepper spray a crippled woman on chemo?”  He had a shit-eating grin on his face.  “Yes.”  Nothing would have given him more pleasure.

I left.

I reported him to his security.

I’ll report him to the hospital.

I’ll report him to the local news media.

I’ll find out his name.

I’m going to ruin him.

This is not his fucking country.

Michelle Obama said, “when they go low, we go high.”  Maybe that applies to human beings.  Nazis aren’t people.  But I don’t really feel  it applies much to humans, either.  I’m okay.  I’m gonna be okay.  I’m in no danger, but the context of the story really actually makes it worse, but I won’t get into that.

People tell me to stop telling Trumpers to move to fucking Moscow when I see their bumper stickers.

What, like I’m gonna change their mind?   Oh, they might go home and feel justified?  Who fucking cares?  They’d feel that anyway.  They’d feel that watching my 40 year old fat ass take their handicapped parking space they were gunning for when they leave a note or make a comment that if I lost weight, I could park normally.  “Yeah, but I’d still have MS, you fucking asshole,” is typically the response.

Trumpers, Nazis, they’re all the same.  They can’t be reasoned with.  I don’t give a fuck about their sob stories, economic or not. Juggalos come out of the same impoverished midwest and all those crazy bastards are about is partying and have a song that repeatedly cries “FUCK YOUR REBEL FLAG.”  Economic anxiety my taint.  Racists, Nazis, pedophiles, separatists, Nationalists, alt-right, whatever kind of bullshit catchphrase they use now–they’re not fixable.  There’s no “seeing their side of the story.”  There’s no reaching through.  There’s no income inequality magic bullet, because you know what?  These people would never be happy with equality.  Class consciousness would upset them.  Make the same money as a women, or worse,  a woman who isn’t white?  They’d never go for it.

Marx didn’t anticipate much beyond the price of corn and the making of pins an capitalism being prone to chaos.  The world has changed.  Fixing the economy won’t fix Nazis or Racists or Trumpers, because it was never about the money, stupid.  It was never about being nicer to them, either.  They didn’t feel “neglected.”  Academic studies have been done on the 2016 election.  It was the racism.  And the sexism.  And the racism.  And the sexism.  Science has made that conclusion. 

Essentially, it was about the hatred.  Always.  It was that wink from a Nazi who desperately wanted a chance to watch me scream and suffer.

2020 is the worst year of my life.  I never met a real-life-overt-wants-to-kill-me-while- looking-me-in-the-eyes-Nazi before.  I never had physical pain like this before.  I never felt so much like the world didn’t understand me before.  I never wished so much that fucking meteor a while back had just gotten it done.

Pictured: three bitches who let the Earth keep going which led to Trump

Big Beth

My middle name is “Beth.”  I was named after my grandmother, a pillar of a woman, though her build was slight.  She loved children, especially her grandchildren. With an absentee father and a single parent mother, I spent a lot of time with my grandparents.  My grandfather loved to call me “Little Beth” when I was very small, and I was defiant about it, insisting, at the age of four, that I was not little.

Oh, how many times since then have I wished to be called Little Beth again?  No one has ever called me little since. I grew like a weed, and then puberty and hormones brought weight and a genetic disease called lipedema, where painful fat deposits accumulate in the arms and legs.  I was six feet tall when I stopped growing. Not the lithe, stick-thin supermodel six feet tall, the stretched out woman you think of when you think of a six foot tall woman.  

I am not willowy, or statuesque, and my legs are over forty inches long but they’re as thick as tree trunks.  I never had what my ex boyfriend called “girl arms,” his greatest desire for me when we would go to the gym.  

“I want you to have girl arms,” he would say, meaning soft, feminine, but not too thick upper arms.  Think Emilia Clarke, or Alison Brie before she lost all that weight for GLOW. Little did either of us know that my then-undiagnosed lipedema made “girl arms” impossible, but most of what men want from us is impossible, anyway.

I’ve come to terms with being an enormous woman.  There are some perks. I intimidate other women; no one has ever picked a physical fight with me.  I’m taller than most men, so I can tower over them or glare them back straight in the eyes on public transit when they’re being creepy.  I can reach things on tall shelves. People leave me alone. They move away to avoid touching me. I know it’s because they think I’m disgusting, but it’s okay.  I’m as uninterested in touching them as they are in touching me. What, do you skinnies think we just love brushing up against you? We don’t. I came to terms with that a long time ago.  I’m just glad they’re leaving me alone.  

I’m too big to fly coach, and even if I wasn’t, it would be too dangerous.  My legs, those nasty tree trunks caused by lipedema, “the painful fat disease” as they call it, can easily lead to blood clots if I crunch myself into a coach seat.  I’m too poor for first class. And the thought of even attempting to try crushing myself into a coach seat makes me feel like I’m going to have a panic attack. Once, I flew Southwest, a really short flight, from Portland to San Francisco, and got there very early so I could pick the front row with the most legroom.  I sat by the window and stared and stared out of it while people boarded until it was nearly full. 

An old man was looking for a seat.  The flight attendant pointed to the seat next to me.

“Look at her,” he barked.  “She doesn’t belong next to anyone!”

I crunched myself against the window and didn’t turn my head.  The flight attendant found him another seat. I was another woman, trying desperately to make myself smaller in a world where women can’t be big.  Can’t be tall, can’t be fat, can’t be anything but petite, or as the kids say, “smol,” to indicate just how adorable it is to be little. Oh, why won’t anyone ever call me Little Beth ever again?  Grandpa’s gone, but even when he was still with us, he’d stopped calling me that thirty years ago.

I haven’t dated anyone since Girl Arms, and I don’t really have any interest in dating again.  All of me is too big to accommodate another person, and here I don’t mean my body.

I used to pride myself, in my younger adult life, on being “chill.”  Relaxed. Nothing got to me too much. I was mellow. I loved drugs as a youth, but never cocaine or speed or meth.  No uppers, period. I liked weed, and acid, and mushrooms, and benzos and molly. Things that made me feel nice and mellow and see pretty things.  Now that I have MS, they sometimes put me on steroids, and those feel like uppers. When I take them, I’m jittery and pacing and I can feel every single beat of my heart, which feels like it’s going to explode.  I hate them. I need to feel calm, and at peace, because that’s my default state. It’s as much as part of my identity as my (now declining) intelligence, but that’s another essay, for another day.

So you see, why my body grew massive, I was able to keep my emotions small and manageable enough for me to cope with.  I could deal with things. I let myself cry, sure, my mother always told me to let myself cry. I didn’t bottle things up, but I didn’t go into hysterics.  I didn’t go into fits of rage. I didn’t find myself inundated with intrusive thoughts. Nihilism was not my philosophy of choice.

But Multiple Sclerosis attacked my brain when I turned 34, and it changed me.

I became someone else.

The myelin that is supposed to protect my brain and spinal cord was attacked and chewed up by my own immune system, leaving sensitive parts of both exposed, damaging them, confusing them, and now I no longer worry about my body being too big.  I don’t care anymore. I’m beyond the insults of others on my big fat ass, my big fat ass is spectacular.

No, what scares me is the size of my rage.  The size of my emotional pain. What scares me is that sometimes when I cry, I can’t stop for hours.  That when I get upset, I scream, and wail, and I realized that if people cannot handle the size of my enormous physical being, the size of my massive emotional being is so much worse.  They’re disgusted when they brush up against my fatty flesh. They’re terrified, bored, turned off, scared off, disbelieving, or they just roll their eyes when they brush up the real Big Beth, the one in my mind, who cannot just be “chill” anymore.

Most of my best friends can’t handle Big Beth.

Sometimes, Big Beth is too loud that my own mother shuts down in her presence.

Over Christmas, after two and a half months of everyday migraines, I got an email from my nurse informing me that they had no solutions, no answers, no remedies for these constant migraines.  I had a friend who wasn’t speaking to me. I screamed in pure agony. Big Beth’s pain felt like fire exploding from my chest, from my eyes, from my ears, rays of fire-light spraying from my fingertips, like something inside of me had to escape.

Do you know what it feels like to be in so much physical pain that you want to die?  Because that’s what Big Beth in my brain was responding to. Physical pain destroying me mentally.  Do you know that I’ve spent about $800 on medical marijuana since the beginning of November? Money I do not have?  Because this fucking government and fucking Medicare won’t cover it? I can get opioids from Publix for 11 cents on Medicare, but I can’t get a doctor to prescribe it.

So when I got the email, telling me they would do nothing to ease my pain, that they had no answers, Big Beth in my mind wanted to escape this horror of a body forever, and she screamed and she yelled, and my own mother went silent and shut down.

Little Beth was a cute, sweet girl beloved by all.

Big Beth can never be loved.  She’ll always be alone. She’ll always be in pain.  She’ll always long to be little again. And she’ll never be little.  Even her weight gain isn’t her fault, it’s the lipedema. The MS certainly isn’t her fault, but try telling that to the people who think she’s too loud or too angry.

Big Beth is too much even for her own mother, the person who loves her most in the world.  She later apologized, sweetly. But she also told me she didn’t want her neighbors to hear us, either, because that’s embarrassing.

Big Beth’s family is very polite.  We don’t talk about things unless we’re in person, the extended family of Facebook politeness where we pretend we know each other even though we don’t.  Big Beth occasionally makes an appearance there, when a cousin or an uncle comments on Alison’s page only once in a blue moon to tell her how wrong she is, Big Beth emerges and snaps back.  Who are you, you stranger, to come to me only when you want to correct me? Who are any of you?  

Big Beth doesn’t know.  She waits, coiled, angry, and too much for anyone to handle.

Kirsten and Megan

My mother has been quietly hoping, I think, that I would finally use this blog to write something nice.  Not pressuring, she’s not that sort of person, but quietly hoping that I’d show the world that I have some nice stories to tell, and I do.  It’s just been easier to tell the miserable ones lately.

I don’t have kids.  I’m not married, either, and while the no-kids thing is very much by design, the no-marriage thing is starting to feel that way, too.  It’s not that I’m necessarily opposed to the idea of marriage, I know plenty of people with happy marriage. In fact, I think the two women this piece is named after are among them, or at least I hope so.  It seems so from what I’ve seen on Facebook, and they’re two genuinely good people, so I hope my impressions are correct. But relationships are a lot of hard work, they just are. I was in them a lot when I was younger, pretty much nonstop from the ages of 15-25. Like I have a tendency to do in my life, I burned myself on the damn thing.  I get intense with what I get into. I did it with school, I did when I fell in love. I lost myself every time I fell in love, neglected my friendships, neglected my own desires and wishes. I pulled chunks out of myself and offered them to the men I dated, hoping it made me good enough to keep them, even when I didn’t really want them anymore.  Maybe they weren’t the right people. Maybe society has fucked me up too much to deal with men and I should just stick to women, who I am very attracted to. Or maybe I’m just tired, which feels like the real, honest answer. The thought of being with anyone, barring Henry Cavill appearing at my doorstep without a shirt out of nowhere, just tires me out.  I’m sick. Having MS feels like a full time just, and I love the freedom that comes with being single.

I sleep when I want to and wake up when I’m no longer tired.  There aren’t many perks to being permanently disabled and “medically retired” at the age of 40, but this is one of them.  I rest when I like, and god, when you have MS, you want a lot of it. You keep peculiar hours when you just sleep and wake whenever, and this is fine, too, if you’re single and childfree.  The dog doesn’t care. I’ve always been something of a night owl, too, and I remember more than one ex whining at the fact at my sleep all day, stay up all night habits. Who needs that? I go out, I don’t have to tell anyone where I am or when I’m coming back.  I don’t have to check in with anyone, I don’t have to wait and see what someone else is doing for dinner. I eat when I’m hungry, sleep when I’m tired, blast Barry Manilow when I need to belt out “Weekend in New England” in the peace of my own bedroom at 3am without pants on.  It’s a good life. And I hate sharing a bed with anyone who isn’t my dog for sleep purposes, so that works out for me as well. I can watch The Tudors four times and only my dog is here to judge me for it.

But what I do have in my life, and what I’ve always had in my life, are friends.  Deep, close, intimate friendships that have been so meaningful to me that they have felt more painful to lose than romantic relationships when I have lost them.  I always expected my boyfriends to disappointment me somehow. I always believed my friends would be there for me forever.  

Most aren’t of course.  Most drift into your life and leave quietly, whether they move or you move, life just makes you move down the river to a different spot, you do different things.  Some friends become your closest friends, and leave through an explosive, painful breakup. I’ve had some of those, and they hurt, more than any other kind of breakup.  I tear up just thinking about them. I think of the pain and betrayal and it makes me tremble and I realize that even being told of my MS diagnosis was not so thunderously traumatic as some of those times.

But this is an essay about the good friends.  The ones who were good to me. It’s starts when I was a child.  My mother always told me to befriend the new kids in school, as I mentioned in another essay, and Kirsten was one of those new kids in fifth grade.  We became instant friends and she taught me about so much. I thought she was so cultured, she was from New Jersey and had been to New York so many times and taught me about musical theater and had gone shopping at FAO Schwarz and ice skating at Rockefeller Center!  We both loved the New Kids on the Block and we saw them live in concert together at the Joe Robbie Stadium in Miami. After the concert, I declared to Kirsten that it was the greatest night of my life. Perhaps a childish declaration, but it’s been about thirty years and I have never said it again since, so maybe I was right.

Kirsten’s name is pronounced Keer-sten.  So is Kirsten Dunst’s. And Senator Kirsten Gillibrand’s.  In fact, I’ve never known of a Kirsten who has pronounced Kerr-sten, despite the fact that many people seem to constantly mispronounce it this way.  So this is my public service announcement: If you see the name Kirsten written down, chances are, her name is pronounced Keer-sten.  Kirsten owned a piece of the Berlin Wall, I remembered, and was/is the most fashionable person I have ever met.

I met Megan in middle school.  She was in the gifted classes with Kirsten and a bunch of other girls who were in our group of friends.  When I think of Megan I think of how we used to ride the bus together in the morning and share earbuds and listen to Simon & Garfunkel. I think about how her dad looks like Scotty from Star Trek would always make jokes about Canada with me.  I think about how I would ride my bike to her house and good off, and how we would sit together in drama class and draw cartoon characters we made up that had a soap opera-esque saga that made no sense and were completely ridiculous.  

Sometimes I’ll see a woman rocking some audacious fashion and it will make me think of Kirsten.  Or I’ll see some ridiculous infomercial and it will be the exact thing Megan and I will have laughed at.

I have so many special friends in my life.  Friends who have saved me and rescued me and been there for me when I have gone through such darkness and pain.  I have had my house burn down, been through break-ups, lost a father, lost jobs, lost other family members, lost dreams, lost my health, moved across the country and back, and I’ve had the support of so many friends who have been the only reason life has been okay at all as an adult and as a child.  I love my family. I am so blessed, my family is fucking awesome. They continue to be fucking awesome. I am so lucky. My mom is like, inhumanly amazing and someday I’ll get around to writing about her when I am able to cry that much, because she is like, beyond heroic, honestly.

But I wouldn’t be shit in this life without my loyal friends, and Kirsten and Megan were the first friends I ever had who showed me they would always have my back.

Middle school is brutal, you guys.  I hold zero grudges for anything anyone ever did to hurt me in middle school because what a fuckin’ shit show, am I right?  But it was hard for me. The first two years especially. As I said, I had my friend group. I left for the summers, to spend with my cousins, aunts, and uncles in Illinois.  And on the last day of school, of sixth and seventh grade, my group of friends handed me a note, telling me I was embarrassing and they no longer wanted to be my friend anymore.  Dumped. Two years in a row. Signed by every single one of my friends.

With two exceptions.

Kirsten and Megan were never involved with this.  They never took part. They never abandoned me. It had to be hard.  The majority was very much against me. I was scared to bring it up at all, that I don’t think I ever properly thanked them for their loyalty.  Most of the friendships broken by those Dear Alison letters ended up repaired, some didn’t. But Kirsten and Megan set a beautiful example to me, at a young age, of how to be good and loyal friends, and I never properly told them how glad I was for it, how much I love them for it.

In my life I’ve had so many wonderful women who have been my great friends.  There’s a line from the 2009 version of Jane Austen’s Emma, and I’m too lazy to check if it’s a direct quote from the book, but the excellent Jodhi May’s Mrs. Weston sincerely declares, “I don’t think a man understands just how necessary it is for the woman to have the company of another woman.”  Since Kirsten and Megan I’ve had Heather and Crystal and Michelle and Ariana and Teresa and Holly and Jacqueline, and so many other wonderful women I’m so happy I’ve had the chance to know and love.

I’m not having kids.  But Kirsten and Megan are both raising daughters and you have no idea how glad this makes me.  When their daughters get to middle school, I hope they find themselves with friends as wonderful as their mothers were.  And I’m so excited that these two ladies are shaping the next generation of women. We’re in good hands.

Fraud Guarantee

Before I got sick, I was never bored, never lonely, never depressed.  I had sadness, of course, moments of anxiety, too.  Everyone goes through these things because they fall within the normal spectrum of human emotions.

But I’m sick now, and I’m depressed, and I don’t know why.

Is it because the lesions from my Multiple Sclerosis have affected parts of my brain that affect my emotions?  Is it because the nerves that go haywire with this disease are sending the wrong signals?  Is it because I’m 40 years old and my periods are getting shorter and I’m approaching menopause and my hormones are all fucked up?

Is it because I had to leave the only place I’ve ever lived that made me happy in favor of a Republican-controlled swamp that makes me sick with toxic green algae every summer?  Is it because my dream of grad school was a nightmare?  Is it because I read an article once ten years ago that said fat people don’t have the discipline to get a PhD, and I didn’t get a PhD, and now I think they’re right?  Is it because I know what really happened is that a disease I couldn’t have prevented stole my whole life from me?  Is it because I’m poor and live off Social Security so even though I have nothing but free time I can’t do anything fun?  Is it because even if I could afford it, this disease exhausts me so much that I feel like I want to fucking die after a simple trip to the grocery store?

Or is it because everywhere I’ve ever been, I’ve felt like a fucking fraud?  I felt like a fraud when I got my full scholarship at Portland State.  Sure, I was getting straight A’s, but didn’t they know I wasn’t trying nearly as hard as I could have been?  I felt like a fraud when I got accepted into the University of Miami with full funding into their MA/PhD program.  I had good GRE scores, I’m sure great letters of recommendation, and a near perfect GPA, but didn’t know I was going to an easy state school and that my math scores were flimsy?  Didn’t they notice the typo in the first fucking sentence of my Letter of Intent?

Oh yes, once I got there, once they looked at me and my fat ass, my cheap clothes, and they could sense that I didn’t belong, they realized.  The first people in my life to realize I was a fraud, and they told me all the time.  I got sicker and sicker and they made sure to tell me I was lazy.

Let me tell you, there’s nothing in the world more painful than hearing people you want to impress tell you all your worst insecurities about yourself are true.

So when I was falling apart, when MRIs and a lumbar puncture said I had MS, when my doctor told me that my description of my experience said it sounded like the progressive disease, I still felt like a fraud.

I still do.  Years later.  How did I get on Social Security?  I hear horror stories from people who seem so much sicker than me and more deserving who haven’t gotten it.  Was it because I’m so fucking sneaky and shady?  But all I did was apply, I don’t understand!  Don’t these people see what a fraud I am?  How did I convince all these doctors?  How did I convince the government?  Sometimes I want to call my doctor, once of the best MS specialists in the state of Florida, and say, “Do I really have MS?  Are you sure?”  As if he’s injecting me with chemo medicine every month for no reason.

I feel my mind slipping away, I know I can’t read a long book anymore, I don’t have the focus.  I fall apart at any exertion.  My brain scans have come back clean this last time, when I was feeling worse, sicker than ever.  Migraines every day for months.  Wanting a reason for all this fucking pain that made any fucking sense and getting none.  Maybe I’m just a fraud.

I forget things all the time, so many things.  I forget treasured memories.  I’m not nearly as smart as I used to be, but everyone tells me I’m still so smart, and I know they mean well, I know they’re trying to tell me I’m not losing my mind, but all I hear when they say those things is, “You’re a fraud, you know?  You’re a fucking fraud.  I won’t validate your reality.  Except for the one that tells you what a goddamn fraud you are.  You’re not sick.  You’re just lazy.  You can fix yourself.  You’re still smart.”

Someday, I’ll be on my deathbed, probably unable to walk, maybe on a ventilator, probably having someone pull the fucking plug, and I’ll be thinking to myself,

“You could get better.  You’re a fraud.  You’re taking the easy way out.”

But I’ll do it anyway.  Because a fraud is all I’ll ever be.

PCSD

When you’re an unbearably large woman, you have a few options, but all of the good ones require some natural talent or dedicated skill acquisition.

You can be funny.  I’ve gone for this.  I like to think I can pull it off.  Not enough to make a career out of it, not even enough to conjure up a good jape for this essay when I tell myself “think of something funny.”  It has to come organically, and it often does, and it’s nice. Fat girls are often hilarious. We gotta be. The world will laugh at us anyway; we’d prefer you laugh because we’re so goddamn witty.

You can torture yourself into trying to be the beautiful thick girl.  A lot of girls can really pull this off and look stunning. But you have to be the right silhouette of plus-sized, and not too plus-sized. You need that hourglass, and if you don’t have it naturally, you shove yourself into shapewear and corset training and you drink that horrid poop tea that the low grade celebrities on instagram sell.  You cake on the make-up, contour your tits, shove your feet into high heels, and you’ve mastered the art of the perfect winged eyeliner. Your hair, god, your hair is a work of art. Your clothes are beyond cute and sexy.  You work it, honey. But that ain’t me, babe. I’m a creature of comfort.

On television, the fat girl sits in the corner, sipping on a soda, shy.  Or she gets mad at her beautiful friend, jealous that she is with some jerk.  She fades and disappears, or she has an inspiring weight loss journey. This is in fiction.  On reality shows, some horror movie monster like Jillian Michaels screams into her ear and dehydrates her and puts her on track for a lifetime of eating disorders and exercise far more unhealthy than anything her life was before a monstrous woman with her own body image issues bullied her into years of therapy.

For me, I just went for being the smart one.  Even before I got fat, I was told, over and over again, how smart I was.  Gifted, they said, and not in the way every weirdo on the internet claims they were a gifted child but now they think they just had ADHD and that “gifted” was a codeword conspiracy for mentally ill children.  No. Gifted was defined by academic performance and an IQ test. Gifted class was learning. School came easily to me. Standardized tests, the ultimate evil in today’s educational society, were easy as pie to me.  I breezed through them. I breezed through school until homework was required, and things got a little dicey until I learned that, fuck, I actually had to do my homework, but after that, I got back on track.

In high school I was an overachiever for most of it.  Before you blame my mother, please know that she was never the one to put pressure on me about this.  Ask her and she’ll laugh and say she was a solid C+ student in school, and an A+ employee at work. She got good enough grades to go unnoticed, to never make anyone super angry, but also never to build up expectations so high that she could let anyone down.  She would have been more than fine with a daughter who was a solid C+ student.

But by then, I was already getting “fat.”  God, not by today’s standards, of course. Today my teenage body would have been celebrated.  Big ass, everywhere else was normal. But a fat ass in the ‘90s and a fat ass in 2020 is not the same, and in the years that have passed, it’s not just my ass that’s fat anymore.  Isn’t it horrible the way we look at old pictures and see how beautiful we once were and never had any appreciation for it?

But I digress.

I put pressure on myself to be an academic because “smart” was the only thing I felt like I had going for me.  I loved acting, drama, but then again we ran into the “too tall, too fat” to be a leading lady problem. My biggest role was the Camel with the Wrinkled Knees from Raggedy Ann in Drama Club in high school, a big role to be sure, but it was a fucking camel.  My second biggest role was playing some sorcerer’s assistant, a hideous Igor-like minion who hunched over, meant to be hideous, using a raspy voice and calling the sorcerer “Master” as a hideous minion does.  I auditioned for The Diary of Anne Frank, and you can guess that my fat ass was not welcome in a play about the Holocaust.  I was fine to play beast or a deformed creature, but not anything too serious. The beautiful waifs who fit into the heroin chic style of the era got those roles.  They were my friends, my close friends, but I resented them for it. They always got to play those roles. No one ever asked them to play a fucking camel.

So in the end, smart was all I had left.

I knew I’d never be valedictorian.  Those people at my school operated on an intensity level that frightened me.  But I thought, I could get into a good school, not Harvard or Yale. But maybe Wellesley (where my idol Hillary Clinton went) or Mount Holyoke or Northwestern.  I bombarded myself with the most difficult classes, even those like AP Physics and AP Chemistry that were well beyond my academic strengths. My mother pleaded with me when I dropped Drama completely my senior year, “you are being too hard on yourself, take something easy, take Drama again, take an art class, you don’t need to push yourself like this.”

And Mom, I know you love to hear it, so here goes: You were right.

I burned myself out by the end of the first semester of my senior year.  AP Chemistry was taught by this horribly snobby teacher from a New York private school who on the first day told us all how stupid we were for our Florida public education, how disgusted she was that she would have to hold our hands through everything, that she would have no patience for slow learners, because back in New York, she never had to explain a thing twice.

I sat in the back of the class, thinking, “Well, why don’t you go the fuck back to New York, you snobby bitch?”

She hated me and the feeling was mutual.  My entire academic world fell apart as I began to feel stupid in classes.  Suddenly all I had, the only thing I had–feeling smart–was gone, and the cunt from New York on the first day of school was only the first taste.  I dropped her class (something we had to get a psychologist to sign off on, because she refused to let me leave. Why? Sadism, probably. I was getting an F), but everything had begun to unravel by then.  I felt lost. I broke up with my boyfriend who had moved to Massachusetts for college at Amherst, I made new friends, I started to party. I learned about alcohol, yes, but even better: marijuana, LSD, nitrous oxide.  God, I loved drugs. Being high meant I didn’t have to worry over my own self-worth. It meant I could smile and be happy with my friends. 

I tortured my poor mother that year.  Again, I know you love hearing this so here’s another gift: I’m sorry, Mom.  It wasn’t personal. It was burnout.

I graduated, barely, because I cut class so much because I just didn’t want to be there anymore.  I still hate high school. If people actually say those were the best years of their life, it makes me really fucking sad for the rest of their life.

I moved out of the house and went to the University of South Florida, where I majored in LSD and acquired zero credits.  After that I spent twelve years in the low-wage workforce, thinking, “I’ll get to college eventually.” I wandered the country, living in Tampa, FL and Lynchburg, VA, and Tuscaloosa, AL and then ten glorious years in Portland, OR.

It was in Portland, at the ripe old age of 30, that I went to college for real.  I was so nervous. It had been so long! Did I even know how to be a student before?  Was I smart enough anymore? Would I feel weird as a 30 year old around a bunch of kids?  But I was hungry for it. I wanted it, more than anything, and I got my financial aid in order and applied and got accepted to Portland State University, right there in town.  

I went to Orientation and the director of the University Honors Program made a short comment telling us where to meet if we were interested.  You’d think I would have not even considered it, given my nervousness, but I’d gotten into USF’s honors program, so why not, I figured. The professor in charge of the program was unbelievably intimidating, this silver-haired, incredibly elegant and well-dressed man who delivered every sentence with such eloquence that I felt like an unwashed pleb in his presence.  About ten of us showed up and he gave us a terrifying speech on how arduous the program was, but that they did still have spaces, but it was obviously a speech meant to scare us away.

After his speech, a few people got up and left.  He turned to the rest of us and said, “well, now that the riff-raff has left, we have enough spots for all of you who are left.”  And just like that, I was in the Portland State University Honors Program.

It was the best decision I have ever made in my life, even if Dr. Wheeler (that intimidating man, who eventually because my biggest cheerleader and wrote my grad school letter of recommendation) made it sound scary.  I made sure not to take his class, I took the freshman honors class led by two women. It was a year long class and, after first quarter ended, the professors were so impressed by my work that they gave me a full tuition scholarship, retroactive.  I burst into the happiest tears in my life. To this day, I think it might be the happiest moment I’ve ever experienced. To not only be accepted by this Honors program, appreciated by the teachers, but told that my work was excellent, so excellent that they wanted to pay my way through it.

Smart.  I’d found it again.  I was smart.

My four years at Portland State were the best four years of my life.  I lived in a city I loved and I felt like it loved me back. I had friends in the city and nearby.  The gloomy damp weather is not to everyone’s tastes, but it was everything to me. The scholarship allowed me to have my own place without a roommate for the very first time in my life.  I had my old dog Charley. I was still healthy. I went down to working two days a week, because with the financial aid and the scholarship, I could do that. As a university, PSU made me feel cared for.  They wanted me to succeed. They understood that their student body was made up of working class people. They offered so many resources to help us get through college.  

My professors were beyond lovely.  That same intimidating Dr. Wheeler, during my sophomore year, when I was battling a series of infections and had to miss class because of a visit to the ER, sat me down and gave me an almost fatherly talk about how he wanted me to be healthy more than he wanted me to be in class.  The words, “As far as I’m concerned, no matter what, you have an A in this class,” actually came out of his mouth. As did the words, “This class is not worth dying for, you are more important than your education.” He wasn’t saying this out of liability. He was saying this out of genuine concern.  He cared about me. He didn’t want to see me sickened for a class.

When graduation rolled around, I didn’t go to the big one.  Just the Honors graduation, a small little party with refreshments with the dozen or so of us who had graduated from the honors program and received our Honors stole that we could wear at the big graduation.  We chatted about the last four years. I took some pictures with my favorite professors, the ones who had guided me so wonderfully through the best years of my life. My friend Holly took me out to dinner to celebrate.  I was to move a few days later, begin my long road trip across the country back to Florida, where I grew up, to enroll in a fully funded combination MA/PhD program at the esteemed elite private institution, the University of Miami.

 mewheelr

Something funny happened that day, too.  My left leg went numb. Pins and needles.  It was obnoxious, and weird, but Holly’s car was kind of cramped and I have long legs, and I figured that was it.  

But it didn’t go away.

My dear friend Teresa came down from Vancouver to help road trip me, my stuff, and my dog to Chicago, halfway to Florida, and she noticed other strange things.  That I was emotionally out of sorts. She chalked it up to me not wanting to leave Portland, so did I. But she noticed other things, that I was tired so fast. That I was falling down.  That my emotional outbursts were unusually strong. We got to the lake house near Chicago that my extended family uses in the summer and I kept falling down, kept being overemotional. Teresa had to fly back to Vancouver, we said goodbye, and Mom saw me the rest of the way to Florida.

In Florida I saw a neurologist.  He ran all sorts of weirdass tests on my leg.  Poked me with needles, gave it electric shocks, did some bizarre shit with magnets.  Then, he sighed and told me he wanted me to get an MRI. I didn’t know what any of it meant, so I shrugged and said, sure.  I told him I was claustrophobic so he set me up with an open MRI, which was nice, and I made an appointment to return when the results were back.  Every appointment, my mom had come with me. But for some reason I can’t remember, I went to the results appointment alone. I suppose neither of us had anything that serious on our radar at all.  The falling down didn’t connect. I was just clumsy! The emotional outbursts meant nothing. I just hated moving back to FUCKING Florida!

I waited in the exam room for the doctor to come give me my results, looking at my phone, not a care in the world.  He walked in and I smiled and said hi, and he said, “Hold on, I think I saw something on the MRI.” I shrugged and looked back at the phone.  I’m not a doctor. I didn’t know what that meant. Maybe he figured it out?

A minute later he returned, pulling up some films and pointing to a big white spot on my spinal cord.  “See that?” he asked me. “That’s a plaque on your spinal cord. It’s causing your numbness and probably some other things.”  

I squinted at it, though it wasn’t necessary.  I could see it. “What does it mean?” I asked, still clueless.

He turned and looked at me like he was delivering a death sentence.  “MS, probably.”

I don’t know what it feels like to be struck by lightning, but it’s probably pretty close to that.  The rest of what he said is a haze, how he always got a bad feeling when a young white woman in her early thirties walked in with this kind of symptom, how I needed another MRI with contrast, how there has to be certain diagnostic criteria, blah blah blah.  I didn’t cry, amazingly. I always cry. I was just numb, in a state of shock. Here I was, on the precipice of all my dreams, ready to get a PhD from a prestigious university, a top five Sociology department, making a sacrifice by leaving the only city I’ve ever truly loved, getting a disability sentence, a death sentence.

Oh, he said to me, “it’s not a death sentence, it’s not a disability sentence.”  But he is wrong. I’m disabled. And I will have this disease until I’m dead.

I drove home and it was like my brain was on autopilot.  I don’t remember anything until I got to my mom’s house, where I was staying before the semester started at UM, and she met me at the door, asking me about the results.

And then, I crumpled.  I fell apart. “The doctor thinks I have MS,” I said.

I did my research.  All the symptoms fit.  It seemed dead on. But diagnosing MS is notoriously a long process.  For me, it was three years and four neurologists. During this time, I was in Miami, getting sicker by the minute. Stress and lack of rest are too major drivers of disability progression when it comes to MS.  Grad students are expected to be basically indentured servants, available at all hours, able to do anything, endless energy, endless time.

I tried explaining my health situation to my professors.  That I was really unwell, but not officially diagnosed. That I didn’t have a lot of time or energy because I had to see doctors and whatever disease I had was slowing me down, but that I would try my best.  I kept up the required 3.5 GPA in extremely difficult classes. I never missed an assignment and rarely missed class. I was so committed to my TA duties that when my grandfather was dying, I helped my adviser work on her fucking focus group instead of driving home to say goodbye.  Two minutes before the focus group began, Mom called and told me Grandpa was gone. I sat there and didn’t shed a tear as I took notes for that bitch’s focus group.

When I tried explaining how not-able bodied I was, they told me to visit the Disability Resource Center.  The DRC wanted letters of official diagnosis, which, of course, I did not have. I was rudderless, and my level of disability was skyrocketing.  I was falling down all the time, one fall resulted in fracturing both feet, which, at least, got me into the handicapped parking, thank god.

I don’t mean to do much naming and shaming on this blog, but Crystal Adams was my thesis adviser. To say she was cruel to me is an understatement.  She would play head games with me constantly when it came to writing my thesis. She had her idea in her head of what she wanted it to be, and my ideas meant nothing.  I resisted at first, because I felt my vision should be important in my thesis, but after a while, I was too tired to keep fighting her, because of her willful desire to never understand me.  She’d gaslight me, telling me to change something in my thesis and then I’d change it, and she’d ask me, “Why did you change that?” I never knew what her expectations were because they would change on a daily basis.

Every meeting I had with her ended in tears, something she constantly shamed me for.  It never occurred to her that my tears were the result of her gaslighting and verbal abuse.  It never occurred to her that I was undergoing a diagnosis for MS and that she, as a medical sociologist who has taught about how people with illnesses are discriminated against by their employers constantly, should have a little more fucking compassion.  The cognitive dissonance that went on in that woman’s head must have been extraordinary.

Instead, she’d say, “This thesis is so bad even the worst universities would never sign off on it.”  

Or, after my defense, “We only signed off on this because we felt sorry for you.  But you need to know this is really bad and we had to convince the outside committee member to put her name to this, she was embarrassed to.”

She might as well have said, “You are a fucking moron and a piece of shit and while I am letting you have your master’s degree, just know that you should never, ever be proud of it and you don’t deserve it, you fucking braindead cripple.”

I think of Crystal Adams and her cruelty, and then I remember Dr. Wheeler and his kindness, and I wonder which one of them represents the real world?  Sadly I think there are more Crystals out there than Wheelers.

I graduated from the University of Miami with my MA in Sociology in 2016.  When they sent me my diploma, I gave it to my mother, telling her that if she didn’t hold onto it, I’d set it on fire.

My bachelor’s degree from Portland State hangs proudly in my room in a beautiful mahogany frame.

I was officially diagnosed with progressive Multiple Sclerosis in August of 2016, three months after graduating with my Master’s, three months after the University of Miami kicked me out for the crime of being sick.  Since then I’ve had countless nightmares, some Post-Crystal Stress Disorder where she’s haranguing me in my dreams, this slight little woman a third my size, telling me there’s something wrong with my brain and that my work is such garbage even the worst schools wouldn’t accept it and all I’m worth is a pity vote.

My only peace in all this hell is that it appears she was denied tenure at UM.  If there’s any justice in this world, she’ll never be allowed near another disabled student again.