It's Only Forever : An essay on chronic illness and orgies with The Muppets
“Yuck! I’m awake.”
That’s depression at 8 AM. Life’s pretty rough when you’re sad to be woken up from a nightmare. I was having an affair with Fred Mertz from I Love Lucy. I wasn’t really enjoying any of it so the term “affair” seems too gracious. It ended up more like a science experiment, especially the part where I was shaving his back.
I console myself that tomorrow night’s dream will be better. My dreams often have sexual context, but the undertones are quite absurdist and asexual. For instance, one of my favorite nocturnal rendezvous was when my husband, Brandon, hosted a Halloween party for the cast of Pink Flamingos- a riot! Maybe tomorrow night I won’t even remember I’m married and I’ll be in an orgy with Seal, Cher, and The Munsters. “I’ve never met Brandon. Is he a good lay? Call him up!”
It doesn't seem to matter what I’m dreaming of these days, Fred Mertz’s pubic hair tank top or 100 Days of Sodom: The Disco, the dream land has become my preferred land, because in the dream land, I’m not sick. Waking and holding the two realities side by side drives the truth home, life without health is the ultimate nightmare.
“I wasn’t always this way.” I find myself saying it a lot.
I always imagined I’d say it in a cool way—like I was being interviewed by Charlie Rose about my outrageous career as a performance artist. “I wasn’t always this way. You know, as a child, I was a real prude. I used to confess my sins to my mother every night like she was my priest. I was so scared of Hell, I’d say the salvation prayer before taking a cat nap. One day I realized God probably didn’t care that I flicked the bean to Hercules. Then I started this pirate punk band called All Hands on Dick, where we do genital mutilation onstage to Yo-Ho anthems.”
Anyway, when I say it, it’s not cool. When I say it, it means I wasn’t always exhausted by 10:00 AM after doing nothing more than getting dressed, feeding the cat, and thinking about how tired I was getting. It means my brain wasn’t always like, “Can you turn off the… um… you know… the… shit… the bright thing? LAMP! Yes, the lamp. Thank you.”
It means I didn’t used to warn directors, “Yeah, so this awkward thing happens where I sometimes pass out when I’m stressed, but it’ll probably be fine.” It means I wasn’t always tripping through the aisles of Home Depot like I was on a low-dose LSD, complete with flashing lights, waving lines, and that surreal, alternate-reality feeling. It means I wasn’t always crying at the airport check-in desk, cancelling the trip because, “I CAN’T GET IN THAT DEATH TUBE!”
No, I wasn’t always like this. I had spunk. I had ignorance. I had mania!
When I was younger, I ran on mania. My mom said I was an equal mixture of Tigger and Eyor. I guess the clinicals call that “manic-depresssive”. God, they can screw up a wet dream!
The weeks leading up to it, I called “the Watcher’s Hour.” During that time, I drifted through life not quite a passive spectator, but more like a secretary quietly recording events. Then, a spark would flash across my awareness. I’d grab onto that shooting star and ride it. In the middle of it, I barely felt hunger and needed almost no sleep. I became a self-generating machine with one mission: complete the thing. Whatever that thing was- finishing a school project, writing a new song, rearranging the entire house, starting my own magazine, or burning through two rolls of my mom’s Fuji film to stage a nude editorial shoot with my Barbies.
I loved my mania. It made life worthwhile. It was integral to who I thought I was…until I got sick.
Everything is different now. I still catch the initial spark, but these days it’s more like a dollar-store sparkler-charming for a moment, then sputtering out in thirty seconds, not even long enough to trace my name in the air.
I wonder who I am without my friend, mania. She was my friend for so many years. It’s hard to accept that mania might have been the bulldozer pushing me over the edge. Moderation? Such a dirty word, someone should grab the crucifix! There’s only one speed-I go fast! I didn’t notice what was happening to my body for over four years. All of this was compounded by growing up in a family that preached, “Push through it!”
My uncle James, a bull of a man who ultimately died of a massive heart attack on a basketball court at age 53, used to do bench presses during arrhythmia episodes, “Honey, I’m fine. I just gotta work out this tightness in my chest!” The language was always about war: battle, struggle, grit, work, enemy. Every challenge was framed as a fight with Satan. That mindset serves you well until your own body becomes a war zone.
I don’t think life works that way. It’s not all neat and clean- 1,2,3,4 I declare a thumb war! Maybe it’s just the old mirror behind the curtain. All along, you’ve been beating the hell out of yourself.
It’s hard to locate a true beginning with chronic illness, but for narrative purposes let’s start with 2021, I got Covid. Everyone got COVID, eventually. For most people, it sucked for about two weeks. For many of us, that shitty two weeks was just the edge of a great shit storm that blew in and hovered.
The first diagnosis was POTS.
“It’s a syndrome,” said my cardiologist, “We don’t really know what causes it, but I suspect you already were predisposed to it, and it can be triggered by things like a virus. COVID could have kicked it off. We’re seeing a lot of that. You can manage symptoms by eating a ton of salt, wearing compression socks, doing more cardio and trying to decrease stress.”
A doctor should never be allowed to utter the words, “Try to decrease stress”. It’s more of a hypothetical than a prescription. People can’t call their boss the next day and say, “Doc says I gotta decrease stress, so see y’all when it’s chill.” You can’t drop your kids off at the Decrease Stress Center with a knapsack and a payer. How the hell am I gonna decrease stress when I’m about to pass out on I40 because I forgot to slam a packet of Mortons salt before I left the house?
“There is no cure.”
That’s what made me plumb red assed. When he said that, I wanted to pull every strand of hair in my head out and run out into the streets screaming like some Lynchian housewife. I wasn’t going to get to work this off- not with a diet plan, not with a pill, not with a surgery, not with a yoga mat. It isn’t life-ending but it is lifelong.
All things considered, I managed that stage of decay pretty well. My online comedy career was taking off. I was landing acting gigs, planning vacations, going to events, building bigger, even mapping out a tour. I had determination, a touch of narcissism, and a firm belief that this would not be chronic for me. Millions of people were still struggling-were they just never taught to push? They seemed like followers, marching-no, sauntering feebly into the valley of the shadow.
I stopped listening to my body. What does that bitch know? She’s boring and mortal.
Toward the end of 2024, I started having strange visual issues. My computer screen looked like it was glitching. When I read a book, the words jumped and wiggled. My eyes would randomly cross. I couldn’t focus on a screen which was unfortunate, since my entire career lives there. I was rubbing my eyes constantly and chalked it up to fatigue and allergies. Then came deeper headaches. My speech slowed. Driving at night became tricky. Maybe astigmatism? My wit dulled. Burnout?
Convinced I had a brain tumor, I went to my GP who ordered an MRI. It came back normal. I was only slightly disappointed that I wouldn’t get my GI Jane moment, shaving my head dramatically like I always dreamed as a kid.
I guess the turning point–or the turning upside-down point–was the vertigo attack I had on a plane coming back from NYC. I choked back vomit sipping ginger ale through my 107th viewing of When Harry Met Sally and prayed this was just a plane thing.
It was not a plane thing.
The vertigo followed me off the plane, through the airport, into the Uber, and spiraled me into the next week. After many specialist visits, I found a great neurologist and we landed on a diagnosis- vestibular migraine. Surprise, surprise: there’s no cure, but it can be managed.
So here I am, literally dizzy with doctors, trying to find some balance between moving forward with life and healing.
A lot of friends wonder how they can help. I don’t really know what to tell them. “I don’t want your help. I want to be well.” I don’t have the balls to be that vulnerable with everyone. That’s the shit you say to your real friends. Within a friend group, there are subtypes. There are rugged, all-weather friends and there are delicate, fashionable friends.
Fair weather friends get a bad rep for being surface level. I don’t know why. These people are great! You invite them to Halloween parties and they always bring that one dish that seems to be a crowd favorite. They notice a painting that looks like you while they are on vacation. They have that one story about getting pulled over and handing the officer their W2 instead of their registration. Their sister dies and you have one meaningful evening that the next 20 years of occasional text messages is built around.
Deep friendships are the best but they are meant to be few in number. You can’t have 12 people who own keys to your innards. There’s only so much time for depth. Those who think they have what it takes to see you through, the ones that say they want the best of you and the worst of you, well, they don’t. They think they do but they can’t. It’s because they are human and each human has their allotted amount of shits to give. You’re fortunate if you have one person in your life that will take it all. I have three, my husband and my parents. I’m luckier than a pig in shit!
People pay the same lip service to illness that they pay to grief: “I’m here for you.” What that means is, “I’d like to send you flowers, buy you dinner, talk about this one time, and then I’d like that to magically cure you so we can all move on.”
It’s almost cute. I’d like that too. I’m just more hip to reality now. People say they understand. But that sentiment gets tested when you start missing birthdays, graduations, shows, weddings.
I didn’t really believe chronic illness was a thing.
It’s so pitifully cliché. The girl who once mocked having “lupus vibes” to get out of parties develops chronic illness and has to turn to her friends with lupus for tips and tricks. To be clear, I never thought people were faking it. That would be such a boring thing to fake. I just assumed there was some lifestyle change they hadn’t tried yet. I really was one of those “Put down the tater chips and get off the couch” types.
The thing I regret most is how I treated my mom all these years. She’s dealt with everything for over 20 years: shingles, chronic fatigue, fibromyalgia, restless leg, hyperthyroidism, sciatica. On top of all that, she had multiple surgeries on her foot, staph infections from the surgeries, and then there was Attack of The Killer Titties . This is what we called her breast cancer. It made it fun like those old horror films from the 50s . The old girl has been through it.
When I was young, she’d drive me to rehearsal four times a week–an hour and a half to the playhouse, four-hour rehearsal, then back home, sometimes not until 11 PM. I’d be belting with the new Wicked, while she rubbed her legs in the car, trying to calm the strange mix of pain and numbness.
I used to nag her to exercise. And yeah, movement probably would’ve helped. But what I didn’t understand was how cruel it sounds to tell someone who’s in pain just from standing that if they walked three miles, they’d be healed. It doesn’t work that way. My mom was sick. My mom is sick. And I could take a page from her and learn how to be cheerful anyway.
Back to the dreams…
I had a dream three nights ago that I was instantly healed. I can’t remember the modality, but remember there was no sex involved. Sorry, aspiring cult leaders. Strikingly enough, I didn’t feel overjoyed. It wasn’t some St Paul moment where the scales were lifted from my eyes and I was saved. I don’t even remember being that surprised. I just thought, “What a waste of time all that worry was.” Maybe the dream world does have something to say to the waking world.
I don’t get to war against this. For now, I have to live with it. What a shitass roommate! I have no idea when the bitch will move out. For now, I bargain with her weekly to keep the lights on.
Although my lack of mania left me an eccentricity nomad, let me be very clear, I’m not molding a new identity out of illness. She lives alongside me but she’s not me. I’m not a “chronic illness girly.” I’m not a “spoony.” I don’t want to join a support group full of ex-church kids who traded pews and hymnals for facebook groups and Reddit threads.
If it were a matter of will, I would have beaten this a long time ago. I’ve got a brain that loves to chew a problem until it’s a flavorless pulp. Healing is more like a Princess and the Pea scenario–try, but not too hard; move, but not too much; get out there, but don’t stay. The words of wisdom I hear from those who actually are doing better, “It takes time.” Damn it, they’re pushing patience again! I’m too whimsical for these trivial virtues!
I’m holding down the fort most days. But some days, I take a Madame Bovary like turn for the worstwhere I take to the bed and wail. Maybe if I keep it up, it will eventually attract a crowd that I could monitize. I really do get hopeless. I feel anger. I feel resentment.
But then, that gets boring.
Wait, that sounds familiar. Said the manic to the people everywhere, “Do you hear what I hear?” I hear the faint cry of my mania beckoning me to move on from the monotony of misery. She steps in to save me again.
And if there’s one thing mania has shown me, it’s that things never last, good nor bad. I’ve got these co-tenants: shitass sickness and mania. The worst of this is temporary. If it is temporary, what could I learn from these strange visitors?
I imagine some day I will be far enough out from the storm that it will all seem like a dream. In that cast, it will end up like all my dreams-a full blown orgy starring The Muppets.