The Catheter Lady

When an invisible illness feels like a gross, sad secret

Photo by Raghavendra V. Konkathi on Unsplash

It’s 6:30 a.m., three days after I got one hundred units of Botox injected into my bladder by my urogynecologist, and I cannot pee. My bladder is paralyzed. I’m running late to work and I'm panicking. I tilt my pelvis. I rub my lower back. I do a “reverse Kegel” or whatever the fuck that is. I bear down. Nothing works. I grab a handful of the catheters from the paper bag that the nurse gave me with the advice, “Don’t worry, you probably won’t need these,” and leave for work.

At work, I realize that I need lubricant. You cannot self-catheterize without lubricant. I take a short break and jog to a CVS a few blocks away and buy a tube of lube and some baby wipes. I return to work with a sense of grim determination. In the gender neutral handicap restroom, I self-catheterize for the first time, clumsily.

Washing my hands, I catch my reflection in the mirror and notice that my pupils are dilated. I can’t bring myself to eat lunch.

I cannot pee and my interstitial cystitis, the disease which led me to get Botox injected into my bladder, is worse than it has ever been in the five years since I was first diagnosed. Interstitial cystitis is also known as painful bladder syndrome or painful urethra syndrome, but rarely referred to as such, and it feels like the name “interstitial cystitis” is a way to politely tiptoe around a chronic pain disorder that affects a part of the body no one wants to talk about. I'm in the flare of all flares. I have a constant, urgent, and often burning need to urinate. I can’t sit. I haven’t been sleeping. I keep my poker face at work as long as possible and then call my dad from the parking lot, crying, and tell him that I cannot pee, that I feel terrible, and that I will have to pee via a small plastic tube for the next several months. I tell him that I sort of want to kill myself, but I know things will get better. Weirdly, he gets it.

It’s just before lunch on a Friday, six weeks after I got one hundred units of Botox injected into my bladder, and I’m taking a mandatory HR training at my desk. A line that defines disability to include anyone with impaired bladder or bowel function makes me feel exposed somehow. I look fine, but I'm a house of cards. I’m walking around with a gross, sad secret. I'm the Catheter Lady.

It’s a late and very hot Sunday afternoon in the San Fernando Valley, three months after I got one hundred units of Botox injected into my bladder, and I make my first ever trip to a marijuana dispensary. I’m hunting for THC vaginal suppositories, which, according to a Facebook thread I found, help relax tight pelvic floor muscles. I have to loudly ask the clerk for “vaginal suppositories.” The suppositories do not help me.

It's 1 p.m. on a Tuesday, a little over five months after I got one hundred units of Botox injected into my bladder, and I have a urodynamics test. My doctor fills my bladder with a saline solution to measure my bladder capacity. There is a special catheter in my urethra and another in my vagina. My feet are in stirrups, my head is propped up by a towel, and wires are taped to my legs. I have become a science experiment. Once my bladder is full, my doctor and the nurse ask me to empty my bladder. I tell them I won’t be able to. I’m being asked to pee in a small medical bucket and I can’t and no one believes me. Someday, I tell myself, this will be funny.

It’s around 4 p.m. on a Wednesday, a little over seven months since I, extremely regrettably, got one hundred units of Botox injected into my bladder and I’m meeting with a new pelvic floor physical therapist. The first one I saw decided to do some extremely off-putting energy healing after I told her my symptoms flared up after a previous appointment. I sat in a fetal position as a woman hovered her hands six inches away from my lower back and said that the pain and constant urinary urgency I’m dealing with originate in my sacrum. This particular physical therapist made me take a bobby pin out of my hair. I guess bobby pins have bad vibes. My co-pay for each of these visits was ninety-five dollars.

The new physical therapist seems normal. She is empathetic. But she can also immediately tell—despite my doctor theorizing that my tight pelvic floor, and not the Botox that he's injected, is preventing me from emptying my bladder—that self-catheterizing is my biggest problem. The muscles around my urethra are in a prolonged spasm. The recurring UTI I’ve been dealing with for over a month is not helping. I feel, psychologically and perhaps physically, better after PT.

It is around 9 p.m., a little over eight months since I, making one of the biggest mistakes of my life, got one hundred units of Botox injected into my bladder and I shock myself by being able to urinate a little on my own. I'm elated. My fiancé is psyched. I dance around the living room singing “I'm peeing on my own” to the tune of Robyn’s “Dancing On My Own.” I assume/hope/pray that this signifies a speedy end to the recurring deliveries of catheters and tiny packets of lube to my apartment every month.

It does not. The Botox is wearing off so slowly that I feel like a paleontologist watching the change between prehistoric eons. The “congratulations on your 1-year anniversary” email from the medical supply company from which I’ve been ordering my catheters makes me incredibly angry.

I come home from a frustrating day in tears and tell my fiancé that I feel like I’m carrying around an invisible bowling ball. That I'm always uncomfortable or in pain, that something is wrong with me, and that I can’t tell anyone. That I’m not a very nice person right now. That my fuse is shorter than I’d like it to be. That I’m so angry. I’m so sad and I’m so angry.

I wait for the Botox to wear off. I wait.

Jordan Sara Kurtzman is a writer and comedian living in Los Angeles. She’s been a second-rounder in the Austin Film Festival Screenplay and Teleplay Contest as well as a PAGE Awards quarter finalist. She’s also a writer and performer at The Pack Theater.