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.