The girlfriends come. They bring gossip rags and nail polish to the hospital room. Morphine fogged, I am not sure if this is happening. They ask me if I want to paint my nails. Your nails look like shit. And they are right: my nails remain, probably for the first time in my life, long and unbitten. My wrists and jaw, inflamed, unable to withstand the stress of nail-biting resulted in the long Sally Hansen nails I had always dreamed of. They are brittle and yellow, as anemic as the rest of my body, but long! I am happy.
With the deft foresight of fashionable young women, they cut me very short, square nails, painted a matte grey. A post-recession austerity grey. The safe unimaginative square with the dull flatness of our foreboding futures. Now supplanted by Rihanna-style, almond-shaped nails in pastels, similar to hospital pastels, of historical erasure, amnesia, and out-of-placeness.
The life cycle of trends exists outside of the cycle of disease and decay. Looks are reassembled and repackaged, regurgitated and digested. The illness is never reassembled. The illness is both cyclical and progressive. It is more of the same with slight variations. Evolution determined by randomized studies. At its most horrifying, it feels oppressively teleological.
The doctor knocks and comes in. Smiling, unable to hide her irritation at the number of people in the room. It is important when you are hospitalized for extended periods of time to be surrounded by people. If you have visitors you must be worth visiting. When you are alone in the hospital you feel like you might slip away in the night, without a word. You need a witness.
The smiling, irritated doctor has my daily test results. As heroically as possibly, I say, “'whatever you need to say to me, you can say it to them.” She asks the girlfriends to leave anyway. Your hemoglobin is dangerously low. You are at a 5 and the normal range is 12-16. You are at serious risk of heart failure and you need a blood transfusion right now.
I know this is true.
I know this because I took two steps
to my mother’s car and then found
myself, back to the asphalt,
staring at a clear blue sky
and my mother,
screaming in my face,
slapping me to wake up.
This is why I am in the hospital for the third time in four months.
The day nurse is back with my fresh blood. She has seen much worse. She looks fabulous and is fashioned in such a way that I've never been able to pull off. Firstly, because my mother would disapprove, with the meticulous self-surveillance that immigrants employ to monitor and police their presentation. Secondly, because acrylics and weaves are expensive. Her acrylic nails are long and I watch them: lavender, French-manicured with rhinestones, as they squeeze my morphine bag, peel the EKG suction electrodes off my chest.
The librarians at my childhood public library had long acrylics. Sometimes pierced with rings, sometimes airbrushed with palm trees. They never needed to touch the books. Pages flipped with acrylics. Stamps held by acrylics. Books pushed toward you with acrylics. Acrylics: a buffer between you and the world.
Constructed for both utility and your humility the hospital gown reminds you that your body is not your own. Its empty back is the most humiliating of sartorial impositions. Whether tied in the front or tied in the back there is an assured oval space that leaves you exposed. It facilitates the easy unrestricted access of doctors, residents nurses, interns, and phlebotomists.
Weeks later, I am relearning movement. My occupational therapist teaches me how to: put on underwear put on a bra put on socks put on a shirt button a sweater put on pants zip up a jacket pull my hair into a ponytail loop a belt tie shoelaces. Contracting the muscles in my arthritic wrist to tie shoelaces is like slicing my finger off with a dull knife. I am praised for ordering chelsea boots without laces. I am relieved to have shoes that are both functional and fashionable.
To be chronically ill is to have jammed the cruise control. To see yourself in the course of a trajectory, determined by clinical studies trials, decades of paperwork. To live and die by statistics. To desire to be an outlier in this data set, allowing inclusion in the range of another.
At this rate, I would rather do the colostomy than increase the dose of the medication.
What the doctor actually says: It might be time to snip-snip. She is not looking at me. She is typing with one hand and snip-snipping with the other: moving her index and middle finger in a scissor-like gesture, cutting out the ulcerated part of my small intestine. I have been trying to avoid this surgery since my diagnosis. 80% of Crohn’s patients require multiple surgical interventions. More than anything, I am dueling numbers. Sometimes it is reversible and sometimes it is not. You get on the table, you go under, and you don’t know what you’ll end up with when you wake up. People go in for a colonoscopy and come out without colons. Surgeons must operate immediately based on what they see. They will not wake you up and ask you if you will miss it if they take it away from you.
Useless asshole. How will I wear high-waisted jeans? Will the colostomy bag come in different colors? patterns? Will it be “skin-tone” (white people)? Can I wear it over the waist of my jeans like a fanny pack? Will I have to wear peplum tops to hide it? EW! Who will fuck me now? My asshole was once precious and fragile. Out of its new obsolescence , can I now have anal?
Remember that pain is an illusion. It comes and it goes. If you do not remember that, you will feel like you are dying multiple times throughout the day. The multiplicity of those pangs merely points to their transience.
Went to the Crohn’s support group once, and once only. Everyone is in different stages of the same thing: time passed, spatiated in a single room. The oldest woman in the room no longer has a colon and part of her colon has been used to replace her good-for-nothing esophagus. Doctor’s have the flimsy ingenuity of broke girls repurposing sarongs as skirts.
At the nail salon, palace of ablution:
I hit reset for the week with a fresh set of nails.
I pick colors like “Need a Vacation,” look like Pepto Bismol.
I sit with a copy of OK! Magazine.
I used to be messy but I have become very, very neat. I have fastidiously prepared for anything. Everything must be in order. Always wear clean underwear, you never know when...
you might faint.
your colon might tear.
your knees might buckle.
Shitting, puking, pissing all the time, but my room is spotless. Sometimes I put on an entire outfit and stay in my room. The kind of outfit that I can wear comfortably for 10 minutes. Today I have the energy to put heels on and lie in my bed.
Stick thin arms and big belly, approximating the shape of a child. I used to be big tits, big hips, womanly. Now, I am supporting this orb of activity in my belly.
I am a vomit dispenser but I have gained a few hours of reprieve so I go to a bar just to stand and be seen. Outside, a girl from college I never see comes to me and says,
You look fabulous. Like really, you look fabulous!
I say, thank you with a paltry smile.
No really, what have you been doing?
Oh, nothing really.
But, you looks so different.
I am wearing a suede cape with mink trim. It is glamorous and it helps hide the 10 lbs I’ve lost in a week because my body is rejecting everything, or so I think.
(Crohn’s disease, dahhhling. I highhhly recommend it. It does wonders for the figure!)
Search #jpouch on instagram
there are all of these people
who are talking about being proud
and confident and living life to the
fullest and i don’t want any of it.
On the DailyMail I read about a woman’s life-saving ostomy surgery,
She is quoted at the top of the article, “At least with my bag I don’t miss telly to use the loo!”
I am humming a song because the vibration makes me feel better, refocuses my attention away from the pain. I can feel sound from inside my body and it is drowning out the sound of all of the machines.
As if every joint were not alternately whispering and screaming at me to slow down,
to take off these dumbass shoes.
Traipsing across Brooklyn in platforms.
They make me taller, better.
I wear high-waisted jeans too. Pants push into the lower-right quadrant of my belly with every step, just pressing against the invisible turn in my intestines that,
as it's been explained to me by the people who have seen it,
is ulcerated and on the brink of snapping apart.
The dressed body is not a suffering body.
I am a fraud in the realm of the healthy!
Linen and silk-- my placebo, snake oil, and armor.
I am walking, eating, talking, being in the world-- passing,
DUPING everyone into thinking that I am one of them!
Quickly changing ensembles before Death catches up--