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.

My Cruel World

“My world is cruel.  You enter, you survive, you die.” -Yennefer of Vengerberg, The Witcher, 2019

Believe or not, I used to get excited for election season.  Not Rachel Maddow excited, who gets a thrill every time they play the NBC election music, but I was raised to be engaged in politics.  I remember rooting for Dukakis at the ripe old age of nine, and having no understanding why anyone would vote for Ronald Reagan. He was so old!  Too old! He didn’t even remember anything in those Iran-Contra hearings! He ignored all those dead gay people!

In my family, you knew politics at nine.  We are a proud Democratic family. I don’t relate to the “talk to your conservative family members at Thanksgiving” comments because my family is not conservative.  We are Democrats, LIBERALS, in the American political way, not the economic way, liberal or neoliberal (which, pathetically, ill-informed people on the internet use interchangeably because they apparently have never taken a single Econ class in their lives, but that’s another topic), but liberal as in believing in freedom, fairness, and equality.

When I was 13, George HW Bush was up for reelection, and Bill Clinton emerged as the nominee.  I was largely indifferent to Bill, but Hillary, oh, Hillary.  Looking back it was the first real moment when I looked at the world and fully absorbed the raging, rampant, toxic, horrifying misogyny that existed.  Sure, I was 12 the first time I was catcalled by a literal group of about a half-dozen grown men. And yeah, despite all the strange things we’re told, like how girls are worse to girls than boys are to each other (a lie), I’d been bullied far more by boys in my life.  I was really tall, middle school and elementary boys don’t take kindly to an amazon in the fifth grade. One time they made me anchor this tug of war rope and all dropped it on my side. I was dragged a hundred feet across the pavement as the boys laughed, saying, “you’re not so big after all, are you?”  They hated me because I could hit a softball better than them. Oh, and I hated that girls had to play softball, too. Why not baseball? We’re not so goddamn delicate.

But I also, at age 13, watched the news and I saw what they did to Hillary.  I saw them make fun of her headbands. I saw them rail about how she didn’t know her place.  They called her Lady MacBeth (I didn’t know what it meant at 13, but I knew it was Bad). Then she had the gall to say she wasn’t the type to stay home and bake cookies and all hell broke loose.  She literally had to enter a fucking cookie baking contest to apologize. It was so degrading. I realized how much they hated her. And it was because she was a woman. Who wasn’t content to stay home and bake cookies.

And I knew, I didn’t want to be a woman who stayed home and baked cookies, either.

My mother bought me the “LEAVE CHELSEA ALONE” t-shirt.  Chelsea and I were in the same graduating class and the media was equally cruel to her.  They called her ugly all the time. Stalked her school. She was a kid in middle school, possibly the worst time in one’s life for self-esteem.  It was also sexism. Virulent, disgusting, sexism.

It opened my eyes, and once your eyes are open, you see it you feel it, everywhere.

When I was 14, I went to Disney World with my female friends.  We went to the Hall of Presidents, my friends Megan and Kirsten said, “it would be so cool if you were the first woman president.”  It was what I wanted. I wanted to be like Hillary. I wanted to defy them all.

I later learned politics wasn’t for me — my skin is far too thin.  And that’s fine. I found my calling studying sociology, and it’s helped me understand the world.  But I got sick with Multiple Sclerosis before I could finish my PhD and fulfill my dream of shaping young minds on the perils and horrors of sexism and racism and homophobia and structural inequality and why people fall into poverty and how we can help them out of it, and now I spend a lot of time sleeping and a lot of time in pain.

And this is where we get back to the quote at the beginning of this essay — Yennefer of Vengerberg.  I won’t require you to watch The Witcher (though if you enjoy genre tv with a more feminist bent, please do), but Yennefer’s story is a not remotely subtle study in what it means to be a woman in this world– whether she’s beautiful, deformed, disabled, ambitious, defeated, or, yes, powerful.  She starts out disabled, becomes beautiful and able-bodied, and realizes that there is no winning for a woman in a sexist world either way. “We’re just vessels,” she says, knowing that a misogynistic world will never respect us, no matter how much literal torture we put ourseves through to be acceptable (in Yennefer’s case, magically reshaping her body.  In ours: plastic surgery, shapewear). We’re objects, to be devoured or used to create life. Yennefer’s rage leads her to desire power more than beauty.

We’re not meant to want power.  We’re not meant to have power. And if they let one of us ascend, it’s a token, and all-too brief gesture.  There’s your scrap, woman. Liz, you had your peak in the polls a couple months ago. You flamed out, like a 22-year-old model.

And here we are, and I’m 40 years old, and it’s 2020, and two women are left in the Democratic primary, and the best chance we have at the first woman president in the United States, is being called a liar.  Because it’s so much easier to believe a man. Because we’re just vessels, Elizabeth. Elizabeth, who was the only one at the last debate before Iowa to mention people with disabilities. You don’t know your place, Elizabeth.  And now Bernie’s legion of sexists are out for your head. You were fine when you were smiling politely at him. Don’t you know women should always keep smiling? Getting angry isn’t pretty. And now you’ve stepped out of line.  For the worst reason possible:

You are ambitious.  You want power.

They’ve called you angry, and  you’ve pointed to the world around you and said, “damn right I’m angry.”  

I’m angry, too, Elizabeth.  Filled with forty years of rage, feeling like I was screaming into a void without a voice, and I’m tired.  I’m so tired. It’s making me distrustful of men, it’s making me distrustful of people on the far left (who I thought shared my values).  When I go through a tag on twitter trashing CNN and I genuinely cannot tell if it’s a tweet from a Sanders supporter or a Trump supporter, I get scared.  When a Sanders supporter (literally yesterday) links me an article telling me that so-called “identity politics” and antiracism are wrong because they detract from the importance of Marxism, I get horrified.

You said you were disappointed in the ending of Game of Thrones.  Daenerys was punished for wanting power.  They made her a crazy bitch for it. Try out The Witcher, Liz.  Yennefer’s power saves the world.  Just like yours could.

I’m disabled.  I will not survive any of the left’s “revolution.”  I will be the first to die. Just like Yennefer. My world is cruel.  I’m just trying to survive until I die. I know people. Friends, family.  People who can walk their dogs, run around with their kids, go hiking. People who can hold a job.  People who can go out more than once a week. People who can go grocery shopping without collapsing in agony when they get home.  People who have more than $962 per month in Social Security to get by, people who have actually, far more than that.  

Family members who make hundreds of thousands of dollars a year have lectured me on why Bernie is the best for the poor.  Another told me in 2016 than I was essentially a “moderate Republican” for voting for Hillary Clinton. Both were men. Neither have apologized, because they don’t think they have anything to apologize for.  Being a man means never having to say you’re sorry, because you never believe you’re wrong.

Neither of them have seemed to have a modicum of self-awareness that they’re talking down to a disabled, poverty stricken woman who has more to lose than either of them.

My proud Democratic family is now full of people who probably think “liberal” is a dirty word and it breaks my fucking heart.  But they live their charmed lives and here I am in my world.

It’s cruel.  I entered. I’m surviving.  And someday, sooner than most of you probably because I have a progressive neurological disease, I will die.  I’d just like to live longer than the next four years.

The Sculptor

My father’s mother died of brain cancer when my father was seventeen, long before I came into existence.  She was brilliant and bright and her brain died first. Cancer didn’t hack away at her slowly, it used a sledgehammer.  This was not done by a Sculptor, or perhaps her Sculptor was outraged, frustrated by artists’ block.

My mother’s mother died after a near decade-long battle with Parkinson’s.  She didn’t go fast like my other grandmother, her mind and body fell away from her, chip by chip, this time a patient Sculptor whittling her away into nothing.  She told me the last several times I saw her how ready she was to die. She told me how the worst part was that she could no longer hold a book and read it because of the tremors, that she was condemned to watching television all day, every day, but reading was what she loved the most.  On our last visit, I sat with her and read to her. The Sculptor had taken a lot, but not her joy for a beautiful story.

When I was 34, I showed the first signs of Multiple Sclerosis.  It’s been six years now, and my mind’s Sculptor works more slowly.  It chisels away a piece that leaves my left leg numb. It sandpapers over a spot that was meant to keep me balanced on my feet.  The Sculptor turns and twirls and waves his arms in frustration because he doesn’t know what to do next, and then after a while, we just feel tired, the Sculptor and I, the symbiote and parasite. collapsing into exhaustion together for a while.  I don’t pay you, I tell the Sculptor. You can stop. This is going to be a long, hard trip, after all. You don’t have a sledgehammer, my Sculptor, you don’t even have as strong a chisel as the other Sculptor in this tale.  

And the doctors have gotten better at slowing you down.  They inject me with poison every month just to hurt you, and I let them.  The label says the poison can kill me, but it’s worth it to slow you down.  I’ll take all of their poison to spite you. My brain is not your artistic canvas.  As Lana del Rey would say, I ain’t no candle in the wind. Besides, you’re no artist, you’re a murderer.  Like a serial killer from a film who poses his victims artfully to confound the police. But destruction isn’t art, pain isn’t beautiful, and fragility isn’t profound.

We have a long road ahead, my Sculptor, my murderer, my tormenter.  Is it mercy for either of us to prolong this? I don’t know, but I’m not the sort of person who surrenders.

And neither do you!  Lately you’d been taking a fine paring knife to the part of me that remembers things from moment to moment.  It happens to everyone, of course,you walk into a room and forget why you’re there. It happens to me every time I go to another place to do something.  Every single time. Sometimes all I have to do is stand up and I’ve already forgotten. I forget what I am saying halfway through a sentence.  

I’ve gotten better at trying to play rewind in my brain, but it’s getting harder.  The Sculptor never surrenders, stubbornly. The best I can do is slow down his progress.  Hope that my new way of thinking through things to try to remember them will forge new pathways, ones the Sculptor hasn’t seen yet.

Why do you do this to us, you wicked would-be artists?  The world already takes our bodies away from us as women, but the brain, the control, the inside, that was mine, that was my identity.  Some women are beautiful and some women are hardworking and some women are smart and I was one of the smart ones. But I feel it, like gold dust slipping through my fingers, the dust of my precious mind that the Sculptor has ground down.

I have no daughters, I will never daughters, the next Sculptor will have to find someone else to take, because my line ends here.  My inherited-but-not-really-inherited brain damage will stop with me and I will have no granddaughter to join our club, the club where the real part of us, the brain, the brain that is our essence that is our identity that gives us all our memories and our love and joy, is taken away from us the way the world wants to take everything from women.

It is my gift to my daughter and my granddaughter that they will never exist.  I wish you happiness in your nonexistence. I wish you health. You’ll have skinny legs and none of your myelin will be eaten away and you won’t inherit my pains and sorrows.

Lest you think I blame my mother and grandmothers, I do not.  They didn’t choose this, either. But my gift to the eggs in my ovaries is that they will die with me, and not in this world that chips away at every woman, even the ones whose brains work fine.

His Little Mermaid

When I was ten years old, Disney released its animated classic, The Little Mermaid.  I was a prissy little kid, but I feel like you’d be hard-pressed to find any little girl in 1989 who wasn’t enchanted at the thought of mermaids.  Mermaids were more enchanted with princesses, mystical and probably not real, but what if they were? They’d be the most beautiful creatures on earth.  I loved the water, and I loved the thought of breathing underneath the surface. Of swirling through the ocean and finding buried treasure, gold doubloons, jewels of every sparkling color.  On top of the mermaid gig, Ariel had fire-red hair, something I’d always fantasized about, and what a pretty name! Ariel! Why wasn’t I named Ariel?

I wanted to see the movie the instant I saw the first commercial.  

My parents were divorced, and shared custody.  I was at my dad’s house when I decided I needed to see the movie immediately, and I asked him if he’d drop me off at the movie theater.  It sounds crazy to drop a ten year old off alone at the movies now, but it was a different time. We were pretty free range kids, in a quiet town where bad things didn’t really happen.  My father said yes, but then he asked me which movie I wanted to see. I told him, The Little Mermaid, of course.  Disney classics may pop out every couple of years now, but they didn’t back then, and well.  This was the first one ever about mermaids!

To my surprise, Dad smiled, and said he’d actually go see that with me.  I was ecstatic. I was Daddy’s Girl, from the day I was born. Mom tells me that when I was born, and I was born a girl, my father was absolutely stunned.  He was the youngest of six boys, you see, and since it’s the father’s side of babymaking that determines gender, he felt certain he’d never get his longed-for daughter.  As Mom tells it, he ran up and down the hallways of the maternity ward, yelling out, “I have a little girl! I have a little girl!”

This tracks with all the memories I have of my father.  He adored me, and I adored him in return. He indulged me, he took me on adventures, we cooked together and laughed together and he’d tell me about all the things he was going to do someday.  Someday, I’ll have a big house, Al, and you’ll have a big room on the second floor. He always had a plan, to get rich, to give me the world, his head overflowing with dreams that he couldn’t help but tell me all about them.  I believed in every one.

I remember details of the night we went to see The Little Mermaid that would seem unremarkable to most people, but were everything to me.  He decided to make it a real night out; we didn’t just go see the movie. He took me out to a Chinese restaurant, my very first Chinese restaurant!  The golden dragons and red velvet decorations made me feel like I was eating at a real palace. We ordered a pupu platter, which I had always wanted to try ever since seeing a segment about it on Pee-Wee’s Playhouse, and of course, I thought the name was very funny.  I remember talking to him about what I wanted for Christmas, and asking what presents I should get for my mother and brother. He joked his answers and made me laugh, which he was always very good at. I remember that the bill came to thirty-three dollars, which was more money than I could imagine in 1989 at the age of 10.  I remember that he tipped the waitress eleven dollars and feeling so awed and proud of my dad’s generosity.  When we walked out of the restaurant and into the movie theater a few stores down in the shopping center, I was walking as if on clouds.  This was a treat beyond what I was used to.

We watched the movie and my dad made jokes that made me giggle for the first half hour.  Then he fell asleep. I didn’t care, I was too busy being enchanted by the film. Oh, it was perfect to me.  “Part of Your World” was the highlight, of course, and thirty years later, I still don’t understand how “Under the Sea” got the Oscar instead.  Ariel’s father in the end of the film gave his daughter everything she wanted, just like my father always did. The movie ended and I nudged Dad awake.

I don’t remember the rest of the night.  I probably went to bed after such a long night out, dinner and a movie.  I don’t remember the days that followed, but I know they were at my mother’s house, because after our dinner and a movie date, I never saw my father again.

It was close to Thanksgiving.  The day before, I was meant to have Thanksgiving with my father.  For the day proper, I’d spend with my mom and her aunt and uncle. Mom dropped my brother and I off at my dad’s house.

The dogs were gone.  The cat was gone. The microwave was gone.  No one was there.

I expressed worry, especially over the dogs.  I loved dogs, more than people (this, perhaps, has not changed).  My brother just looked uneasy and after about half an hour, declared, “I don’t think Dad’s coming back.”

I knew what he meant.  It wasn’t the first time Daddy had disappeared.  He’d been in and out of jail all my life. But there was something that felt so final about it this time.  It was the look in my brother’s eyes. It was the realization that our special night out to see The Little Mermaid was more special than I had even known.  That it was a goodbye.

I’ve always hated Thanksgiving because of this.  The next day, we went to eat at my mother’s aunt’s country club, some relation too distant for me to be myself.  I ate my food and I was polite but all I wanted to do was cry. My father wasn’t dead, but that was the day he died in my life.

Dad died eleven years later, on my brother’s birthday, when I was 21 years old.  I’d been expecting that call for years. I’d given up on seeing him alive by then.  I’d even told friends he was already dead. It was easier than explaining that he’s out there somewhere, but I don’t know where.  When I’d cry at a viewing of The Little Mermaid, I’d always say my father took me to see it just before he died. It was easier than explaining that he was a crackhead and a thief, and that he’d run away from the law, that my mother had searched for him and found him only to lose him again, that maybe he’s dead and maybe he’s not, but he’s definitely a criminal, but you don’t understand, he was a great guy.  

And he was a great guy.  I know what it’s like to have my father love me.  Lots of grown adults whose fathers are still part of their lives cannot say this.  He never hurt me or abused me or talked down to me. He loved me and adored me and I have no bad memories of him.  Whatever his demons, he kept them away from me.

When I went to his funeral at the age of 21, I felt shell-shocked.  Here was his girlfriend, and her son, who was quick to tell me how much my father felt like a father to him.  I wanted to wrap my hands around his throat and scream in his face that he was MY FATHER, HOW DARE YOU SAY THIS TO ME?  His girlfriend was devastated and asked for my phone number. Like an idiot, I gave it to her. She called me, over and over again, to sob over my father, to tell me how much he loved me, how lost she is without him.  She saw me as some link to him and was sucking me dry emotionally. I hated her, I hated her son, and I hated their big, beautiful house with a swimming pool while my mother spent her life pinching every penny without help from my father.

I lost my job.  I was desperate for rent.  I felt like these people owed me, so I emailed his girlfriend and asked for help.  Her son emailed me back, admonishing me for asking for help from poor people, and then send his mother insisted on sending something, but to never ask again.  They sent me fifty dollars.

I got fifty dollars and a lecture.  They got my father. It wasn’t fair to me, and the fact that neither of them took a moment to understand what it felt like on my side made me hate them more.

I hope Daddy never showed this boy Disney movies.  I hope he never took him out for a pupu platter. I just want some part of him to be only mine.  I’m his little girl, the only one he ever had.

Tears For Robbie

I was in fourth grade when I became fully aware of the social world.  Of course, this sounds like a pedestrian thing to say, but I mean it in a very specific way.  I had an event (and even calling it that sounds melodramatic) that changed me. Forever.

I grew up with loving parents.  Sure, they divorced when I was four, but I have no memories of hearing them fight with each other.  They divorced very quietly; my father wanted to see other women, and soon after, my mother discovered she also wanted to see other women.  They shared custody, I was never dragged into family court or asked who I’d rather lived with or if either of my parents had ever abused me.  They hadn’t. They were good, decent people, even if Dad ended up a crackhead. Crackheads can be decent people, too.  

But I digress.

I didn’t really care for the other students at school.  Not that I actively disliked them, but I lived in my own imagination more than anything.  I played four square and tetherball at recess but I didn’t have close friends. I didn’t really have anything going on socially.  I existed, people were cordial to me, and I was cordial in return. And then I’d go home and hang out in my room, or with my family.  Summers were spent in Illinois, far away from south Florida and any potential friends, because my mother’s parents took us in each summer, which saved my social worker mother a great deal in child care costs.  My friends were my cousins, and I never had to worry that I would become unpopular with them. Cousins are the friends you can’t get rid of.

His name was Robbie.  I couldn’t tell you his last name, all I know of him is an image in my head of small little boy with a long bowl cut, the kind that were popular in the ‘80s for little boys.  He was skinny and he had scars on his face and his body from car accident. And he was poor. You could tell he was poor. His clothes looked like they were in poor shape. His fingernails were dirty.  And when we walked home from school to the neighborhood next to it, Robbie went to a motel in the neighborhood while the rest of us went to a house (a duplex in my case).

Naples is where I grew up, and Naples is where wealthy people live.  Larry Bird, Nicole Kidman and Tom Cruise (when they were married), Judge Judy, the current owner of the Miami Marlins– all have had places in Naples.  My dad was in and out of prison for my early years, and when he was out of prison… he still didn’t pay my mother any child support. Mom was (well, is, she is the real salt of the earth here) a social worker, with two kids, in a town with outrageously high cost of living, in the eighties, when materialism was at its height.  What label were you wearing became an important question all through my school years.  

But back in fourth grade, none of that truly connected.  Not really.  

I always made a habit of being nice to the new kid in class.  I remember teachers telling me it was hard for new kids, because they didn’t know anybody, and I couldn’t imagine such a feeling.  I never once switched schools from K-12. I always knew everyone. I made one of the best friends I’ve ever made in my lifetime, Kirsten, because she was the new kid in fifth grade.  I still love Kirsten dearly.

Robbie was the new kid, and so I was nice to him.  I noticed the other kids weren’t too friendly. He attached himself to me eagerly.  Too eagerly for my comfort. I was just used to being nice to people. But okay, I was friendly back.  We’d talk to each other on the walk home. I don’t remember much about Robbie. But looking back, I’d say he was sweet and cheerful despite the hand that had been dealt him in his tiny little life.  He wanted friends. He wanted people to be nice to him. It’s what we all want. It’s what the teacher told us to do for the new kids. I was nice.

And for the first time in my life, my peers made me pay for it.  They accused me of having a crush on him (how do you even have a crush when you’re 9?).  They told me he was dirty and poor. And then they asked the worst question, the question I didn’t want to hear, the question I dreaded and the question I’ve regretted my entire life:

“Is Robbie your friend?”

What?  Robbie?  The poor, dirty kid?  My friend? Of course not.  I was just nice to him once and now I can’t get rid of him.  Of course he’s not my friend, I assured everyone. I lived in the neighborhood proper, see?  Not at the Sands Motel. My face wasn’t all messed up with scars.

And I distanced myself from him. I don’t know if he ever knew why.  Why his one friend who was kind had suddenly gone ice cold. I’ve cried for Robbie in my 40 years of living more times than I can say.  I’ve cried more for Robbie than I have for myself, when my middle school friends dumped me not once but twice (my mother still won’t forgive them for it, and I love her for that).  I’ve cried more for Robbie than any personal social shame I’ve ever felt, and I know I’ll cry for Robbie again and again before I die. 

Because it wasn’t just about Robbie.  It wasn’t just about some sweet little boy the same age as my darling nephew being shunned by his one friend.  It was about me, a loss of innocence, a realization that I had to start caring what my peers thought of me. I never regained that sense of carefree indifference again, no matter how badly I’ve strained.  

Robbie is why I don’t want to care what anyone thinks of me.  Robbie is why I want to shave my head just to have the weight of my hair off of my sore brain.  

The other kids at school are why I’m looking at “cute feminine short haircuts for thick hair” instead of doing what I really want to do, which is go into the other room and grab the clippers and give myself a buzzcut.  Britney Spears did it because she didn’t want people fussing over how she looked. She was sad and didn’t want to care what the world thought.

I don’t know where Robbie is now.  But I’m crying for him again. I’m crying for that little boy who was poor and injured, and for that little girl who was too scared to be his friend.  I’m crying for innocence that can never be taken back.  

Wherever you are, Robbie.  I’m sorry. You’ll never know how much.

The First.

Welcome to this blog. I’ve been blogging for years, but always under a pseudonym, an internet handle that made it safe to tell my truth. Safe from the people I knew in my real life, safe from the prying eyes of family members and exes and old enemies.

But 2020 is the year I speak all of my truths. A purge, an autoethnography, a relation of my life to the broader society. I have progressive Multiple Sclerosis and a master’s degree in Sociology; both might as well be good for something. My aunt and my mother tell me I can write; my graduate school advisers heartily disagreed. Maybe the people who read these essays will disagree. Maybe no one will read them. But they’ll be out of my head and I know, at least, my mother and my aunt will enjoy them.

I come into 2020 as a 40 year old disabled and severely ill woman filled with rage. Don’t expect inspiration from this cripple. Don’t expect happy endings or an affirmation of the beauty of life. If you’re an old friend, or a family member I haven’t seen in several years, don’t expect a familiar voice. MS has changed me, not just my body, but my brain. The Trump Era has changed me, too. I am a creature of anger and pain, now. So writing is my new outlet.

And here. We. Go.