unfuckingbelievable
On understanding your own shit before putting others through it.
This is the fifth issue of Bite Back, a new newsletter by Tess Koman.
Ask me how much I’ve spent on anti-diarrheal medications this month. Do it! Do it. You know you want to. And guess what? The answer is: I have no idea how much money I’ve spent on anti-diarrheal medications this month…but I do know that I just spent $500 about 20 minutes ago on a likely ineffective opioid gut motility tincture and then proceeded to sob about it in the CVS parking lot. I can’t believe I just did that. I can’t believe I’m adding “spent $500 on a likely ineffective opioid gut motility tincture, proceeded to sob in CVS parking lot” to the list of unbelievable shit I’ve had to do this year.
Mostly, though, I can’t believe paying for an exorbitant amount of opium is what just broke me. Like, that’s what did me in just now? I have been to hell and back and I’m not even back yet and the silliest thing—the thing any of you could have told me and we’d have had a ridiculously fun bonding moment over—is what put me over the edge?? And yet, as I have slowly, slowly crept my way back to looking like a human-ish thing (rather than the “oh god, that’s a sick person/thing, look away” I’ve been moonlighting as for the past eight months), I’m finding I’m often more devastated by the smaller moments instead of the monstrous ones that landed me here in the first place.
How we got here
I should tell you upfront that this is the first we’re speaking in real time. While I am still firmly in recovery mode, I am so much better than I was when I started writing this thing. For one: I am no longer septic and/or near death. But the last four times we spoke, I was writing from a place of about 85 pounds. I still wasn’t eating, or maybe I was just starting to integrate clear liquids into my diet? I can’t quite remember. Either way, a TPN pump was yelling at me about 14 times a night to tell me I needed to get the fuck up now, because if not, air was about to bubble into one of my most precious central arteries. I had a pelvic drain slithering out of me, barely in place, but hanging in there via a single dangling stitch and a crusty Interventional Radiology patch. I was fresh off anoThErRRr abdominal surgery, I couldn’t move, I was very angry about the pain and shapelessness of my life and my recent job loss, and I was convinced I should do something to keep record of that period of my life just so I could remember exactly how bad it was.
We’re about 10 weeks post-op now. I’ve gained about 15 of those lost pounds back. I’m no longer attached to a constant drip of infusable protein goop. I can shower on my own, and I am, as I mentioned, the closest to looking like “my old self” I’ve been in months.
Normally, at this point after a surgery or a major medical incident, I’ve firmly moved into my “we are so back” phase. That usually just entails, like, piercing something and talking a lot about how firmly moved on I am across my socials. That dependable phase slowly gives way to mundane routine, and a much quieter gratefulness for said routine. I disappear into it, kinda simmering in recovery sadness but actually living a life. It’s just…normal existence! Wouldn’t you know it, though, I’m out here crying in parking lots constantly, both on heels of anti-diarrheal pick-ups and otherwise this time. I have just been stuck, my friends.
How we’re doing right now
I’m not exactly proud that I am prickling about the invisibility of, well, my usually invisible illness returning. I think I’m scared that what I’ve been through—both recently and over the past 25 fucking years of this disease—is so unbelievable that as I get closer to “normal” (or at least normal-looking), there is so much less of a chance you’ll believe me when I say “I have been to hell and back.”
I already feel this kneejerk defensiveness creeping back in with the people closest to me in my life. The ones who are (wonderfully, genuinely) celebrating my growing abilities to take care of myself like I used to. I hear myself “yeah, but”-ing my mom each time she insists I’m doing better than I was even two weeks ago. I am cold-dropping sadness monologues at my best friends minutes after insisting I am maintaining a good attitude about x, y, and z persistent issues. And that’s one thing—they’ll stick around no matter what (I pray).
…But I am also continuously on Instagram Stories reminding people I don’t actually know that I have been through ridiculous things. It’s very annoying—they have no reason to care or stick around, but I have this pressing and increasing need to prove to them that I am brave and strong, and it almost always comes on the heels of one of these tiny earth-shattering moments. (The last time I did it I I’d just ruined the dentist’s office by…having to go to the bathroom in it. I am confident I’m not the first person to do this—that bathroom’s smell acoustics are horrific, but I took it personally enough to go put unrelated Cool-but-Very-Diseased-Girl content on my socials.)
I have thought about this a lot and have come to the conclusion that it may just be best to list out some of the most awful things I have ever been through, so that you, DEAR READERS, have no choice but to look me in the eye and think: “Holy shit. Is she being serious right now?” Incredulously, you’ll ask: “Is that all real?” With sympathy (but not with pity, oh my god), you’ll whisper: “Jesus, babe, I had no idea.”
INJECT “JESUS, BABE, I HAD NO IDEA” INTO MY FUCKING VEINS.
Let’s try it and see if it works, yeah? No particular order!
One time, after a seton had been placed into my first rectal fistula, I uncontrollably farted for two literal and straight hours while my old friend Adam and I were studying for a Holocaust class midterm. This is because I essentially had two buttholes at the time. Adam, bless him, pretended nothing was happening the entire time while I hotboxed a disgusting dorm, escaping to my sitz bath in ways I thought were subtle every 20 minutes or so. I wonder if Adam is subscribed to this newsletter. I guess we’ll find out.
One time, I pooped on Mickey Mouse on my and Michael’s first couples trip. Mickey doesn’t know this, but Michael does. I wonder if Mickey (and/or Disney PR) is subscribed to this newsletter. I guess we’ll find out.
One time, I had such an explosive bowel movement at Rubirosa that the women on line behind me told management something awful and urgent was happening in the bathroom. They shut it down immediately. It was a Friday night and not a great time for a very popular restaurant to not have their single-stall bathroom available.
One time, a woman who will not be named here single-handedly opened my abdomen back up after a bowel surgery after giving me a very drunken and intense hug from behind at a house party for the environment. My guts literally came out in the middle of Schenectady, New York. That was a bad one. I wonder if she’s is subscribed to this newsletter. I guess we’ll find out.
One time, I pooped on Gloria Steinem. You can blame every publishing house that rejected my 2020 manuscript about the most formative times I’ve shit myself for not hearing the rest of that story! (I’m still looking to sell and have very few hard feelings about the initial rejections—hmu @ penguin random house, or whoever!) (I do not think Gloria Steinem is subscribed to this newsletter, but I guess we’ll find out!!!)
That is all 100 percent real! And those don’t even break the top 20 of my most embarrassing and Impressionable Disease Incidents. Did you have any idea? Did you feel things for me when you read that? Anyway. I’m still sad. It didn’t work.
What we’re (maybe) trying to do about it
I’m not sure what it is about these last many months has been a mental tipping point for me, one that makes me feel so fucking claws-up (and stuck) (and distraught by nonsense) (and worried no one believes me about any of it?) (and scared to heal??) as I’m getting better. Is it a more specific PTSD this time? Why am I so upset about the sheer volume of diarrhea drugs I had to pick up rather than the amount of diarrhea I continue to have to treat? I just cannot believe I just went through some of the things I just went through. I cannot believe I have been through some of the things I have been through. And if I can’t believe the sum total (both in pieces or wholly) of what I’ve been through, what reason do you have to believe me? And why do I care if you believe me?? Why! If I am so excited to finally once again kinda look like someone who’s been through none of it, why do I care what you think or know about me?!
I asked gastro-psychologist Dr. Tiffany Taft as much. Dr. Taft, who also founded Oak Park Behavioral Medicine in 2012 with the goal of increasing access to mental health care for people with chronic illness, is entirely unsurprised by the defensiveness and recurring baby outbursts I’m experiencing at this phase in my recovery. As I get further away from The Great Bowel Perf of 2024-2025, my support system does too. Whether mine (or yours) realizes it or not, “avoidance is one of the hallmarks of trauma, and [those same people probably] don't want to think or talk about the time you almost died. That's their own stuff and it is not your responsibility to fix them.”
“Medical trauma is never really over because it’s related to your body,” Dr. Taft continues re: this constantttttt need to “prove” the extent of an invisible illness: “You can't leave your body, the source of the threat. So how can that threat ever really go away?”
As this nagging self-justifying continues popping up, she suggests “focusing on your own recovery versus trying to get people to understand because (1) they just may not, and (2) they just may not be willing to.” As for putting one foot in front of the other on days when just about anything would put you over the fucking edge? Read more on the enduring somatic threat, she tells me. Oh, and writing is “a wonderful way to work through your trauma.” I loved, loved, loved talking with her. Better than 21863690 “Jesus, babe, I had no ideas.” So, you know. Therapy’s a good idea, too.
How we’re eating through it
A lot of bread this week. A lot of salted butter. A lot of rotisserie chicken (my depression food—share yours in the comments below!!!!!~*~*~*~*~*~*~*~*). A bunch of pizza, too—it hits my nutritionally mandated carb-protein-fat trifecta at the moment, and that is just fine with me. I snuck a donut this past week too, and god, if it wasn’t the best fucking donut I’ve ever had.
More on that in episode two of my new YouTube series Bite Back, embedded below.
Do a sad and sick gal a favor and give it a watch. I’m still so proud I’ve gotten both of these very niche (but hopefully VERY HELPFUL and VERY FUN) undertakings off the ground, DESPITE ALL I’VE BEEN THROUGH, YOU KNOW??? (Let me know what you think. I’m very eager for feedback in both realms. Kasalwaysloveyousickos, byeeeeEEEEE.)
Art by Amanda Suarez
If I don’t get Merch with “JESUS, BABE, I HAD NO IDEA” on it, I will riot. T-shirt, sweatshirt, water bottle sticker, ect ect.
Take that terrible fucking response all the way to the mother fucking bank $
This phrase resonated so much with me: “You can’t leave your body, the source of the threat, so how could that threat really ever go away.” That just really succinctly sums up what invisible illnesses do to the people who have them. Love how you word things!