healing is not linear - A Memoir by Frances Edelstein

Chapter 2: Hospital pt. 1-The Noodle

Trigger warnings: disordered eating/exercise habits, vomiting/diarrhea

When I first go to the hospital, I was glad to be in a place where I would be getting help. My room was very nice, painted walls, a couch for my mom to sleep on (she was staying with me because she's an amazing woman), a full bathroom, and a big window. The view was just a concrete slab, but hey, I could see when it was raining and when it was sunny, so it was good enough for me.

The first night I had a bagel for dinner, and I actually ate a good bit of it. I realized this and felt guilty, like I had to prove I was supposed to be in the hospital somehow. But it was done, and I ate enough to survive another day.

After a couple days and multiple tests being done (my first time being on any type of anesthetic), it was discovered that since I was exercising so much and eating less, my body actually became used to eating so little that I was not able to take in the amount of food necessary to sustain myself. This made me feel validated at least a little and somewhat relieved that I didn't have to talk about my unhealthy relationship with food. The doctors asked me multiple times if I thought I had an eating disorder, and I always said no; I think deep down, I was afraid of the truth. Up to this point, it was being treated as a digestive issue, and nothing more. No therapists, no meal planning, nothing. The first thing they would do is schedule for me to have a NG tube inserted via my nose and into my stomach. There is another kind called an NJ tube but the NG was easier, I'm pretty sure; I just remember that being the more desired option.

A couple days or solater, they inserted the tube—which I've grown to call "the noodle" (I alsocall it a GI tube, but the term they use is NG tube, which stands fornasogastric. Makes sense) since it was yellow and thin like spaghetti—and the feeling of it being inserted was very odd. It felt like when you have a bunch of water going up your nose in the pool; very uncomfortable, and a little painful. I think my nostril was a little crusty with blood for a while, and it was very hard—and sometimes painful—to blow my nose. The worst thing, though, was the way I could feel the noodle in the back of my throat. Every time I swallowed, or even moved my head a certain way, there would be a tugging in the back of my throat that felt like mucus being stuck in your throat when you're sick. Sometimes, the noodle would suddenly pull more into my stomach, making it even more uncomfortable, my nostril being smushed trying to keep it in place. Even as I write this, the feeling is coming back to me through memory. Describing it like this doesn't do it justice, but it was truly one of the worst physical things I experienced. When I first got the noodle inserted and the liquid nutrients were being filtered in me which were on an automated loop every thirty seconds or so (oh yeah, and when the liquid is running through me, I can feel the chilliness of it in my nose and throat. Very gross), my stomach wasn't very happy with it. I would get up multiple times in the middle of the night, pole with the liquid hanging from it rolling behind me, racing to the bathroom in an effort not to ruin my bedsheets and underwear. I made it into a game after a while, trying to make light of the situation. Every time I sat on the bathroom I went "Woohoo, I made it!" as if the shit and I were racing each other. One time, my stomach was really messedup and I was too tired to wake up, so I literally shat my pants through myunderwear and pants, and onto the sheets. I didn't even know until I went to go back in bed from the bathroomlater that morning.  Quickly, my butt started to get rashes from wiping so much, given these events were very frequent. After I was done on the toilet, more often than not, when I stood up, the noodle pulled taunt on my uvula, making me immediately throw up into the toilet. Yup, with all that liquid poop still in there too. Sometimes, they needed my poop samples, too, so trying to collect my poop and not throw up in it was another challenge! These couple days of my body getting used to the tube were pure hell, and I would never wish it on my worst enemy. It was even hard to talk, the noodle making it feel like mucus was building up and choking me every time I tried to speak, and if you know me, you know I love to talk. I could barely move my head, either, so when my mom's amazing friend sent me a care package of art supplies, I had to keep taking breaks, because having my head down that long made it hard to breathe and swallow.

When I told the doctors how awful this experience was going, they all told me the same thing: "unfortunately, you just have to get used to it." I was so angry. All this technology, and they can't numb my throat? is what I was thinking over and over again, boiling in silent anger. My mom bought me some cough drops and mints to suck on, hoping it would soothe my throat a little. It helped when I was sucking on it, but when it was gone, the feeling would come back. Sometimes I had one just to feel like I was eating. I wasn't able to eat much at the time, and already having my body being depraved of food before I got here, my brain was desperate for food, even if my mind didn't want it (more on that in part 2).

My dad, brother, and extended family visited me, and it was always so good to see fresh faces from the outside world. I was able to go outside, but I didn't feel well enough to care. I felt so hopeless, so sick, and so sad. I am truly blessed to have a mom kind enough to stay with me during this awful time, and for her to be financially able to stay the whole time. I realize that I am very fortunate for my loving family during this time and helping me through many trials and tribulations over the years, and I am forever grateful and in debt to them.

I spent about two weeks there, but it felt like an absolute eternity. I can't even begin to imagine how it must be to be there for a month, let alone a year, like many kids at CHOP. They are true warriors, those kids. It is a hard and long road for a lot of them, but I've seen many smile and giggle and make the most of it, and it makes me so happy to see.

The night before I was released, I was in a great mood. I was looking at an Etsy shop I still love to this day, and their products were making me so happy! I love animals, and their jewelry is ceramic animals, so needless to say, I fell in love instantly. One of these days I'll buy a ring from them. Anyway, the nurse that night was very sweet as well, I only had her that night, but she seemed like a friend, very bubbly and radiant, she was like a ball of sunshine. She had a beautiful cheeky smile and perfect white teeth. We talked for a while and she cleared my line with distilled water, which they do every so often to get the gunk out of it, like hardened nutrients, and when she forgot to hook it up, so when it turned on, it was pouring onto the floor instead of my nose, and we were cracking up! I hope she is doing well. She was such a nice lady. I'm not sure if you're reading this or if you even remember me, but if you are and you remember this story, I just want you to know that you really made being in the hospital more enjoyable, and I hope you're having a beautiful life.