Lessons from a Hospital Bed: To my Dad

By Sara Ghassemzadeh

Lessons from a Hospital Bed: To my Dad

This past May, the collection of scar tissue in my terminal ileum had led to a partial obstruction. I needed a resection. I had approximately 10 inches of my intestines removed on May 5th, 2015. The surgery went well, but my recovery was slow. 

 As I mentioned previously, I tend to not give a shit about my personal hygiene when I am in the hospital. My mom begged me to take a shower, and with her help, I was able to do this without drenching my PICC line in water like I did last time. After my shower, my mom’s shift was up and my dad came to hang out with me. He had just power-walked fifty city blocks from my grandparents’ apartment to get to the hospital (he was on a fitness kick at the time) and hang out with me.

 I collapsed on the bed with the bare minimum amount of effort and pulled out my laptop to watch Gossip Girl (as a personal achievement, I finished the entire series over the course of my hospital stay). 

My dad surveyed me with a disapproving expression on his face. For my dad, when something was out of order, it needed to be fixed. He was appalled at my state of disarray (my hospital gown was untied in the back, revealing the grandma-boy-short-wtf-underwear the hospital gives you upon your arrival). He got up from his chair and hurried off to the nurse’s station to try and find me a robe to “cover myself” up. As if my 84 year-old neighbor with a perforated colon was planning on making passionate love to me anytime soon. After forcing me to put on a hideous blue and white striped robe, he moved on to the next issue at hand: my hair.

It was knotted. I relentlessly argued for five minutes, until he insisted that I let him brush my hair. I sat plaintively at the edge of the bed, staring into my hands as my dad pulled out his signature round hair brush with the plastic bristles and patiently began to work through the knots in my hair.

My eyes were fixed on the curtain in front of me and before I could even register what was happening, I felt tears stinging the backs of my eyes. I was transported to my childhood – I was seven years old, and it was bedtime. Had it really been that long?

 There was a period of eight years in my childhood that my mom was very ill with depression, and my dad became the sole provider and caretaker of the house. Even when my mom was not eating or speaking or getting out of bed, my dad would come downstairs with a smile on his face.

My brother and I would watch him play Paper Mario on our Nintendo 64, captivated by his ability to defeat Bowser and rescue Princess Peach in a two-dimensional world. When my mom was in the hospital, we would draw pictures and buy colorful clothes from Macy’s to bring to her as a present. In the summer, we would go to theme parks, and my dad would make us sit in the front row of every roller coaster. To prepare for my mom’s homecoming, we planted a bunch of bushes in the yard that formed a smiley face so she would see it upon her arrival (today, they are so overgrown that it looks like a miniature forest). My dad made color-coded schedules for my brother and I so that we knew when it was time to play outside, when to do homework, and when to watch TV. When we were sick, he would nurse us back to health. He would take us on walks through the neighborhood and we would count our steps out loud in Farsi. We would play “Indiana Jones,” a game where my dad would toss us onto the bed while someone dramatically hummed the theme song (I usually sucked at this game, so it turned into watching my brother climb onto my dad’s back from the sidelines while my dad pretended that my 5-year-old brother was stronger than him). 

 Every night before we would go to sleep, we had the same bedtime routine: my dad would bathe my brother and me, help us put lotion on, and brush our hair (always while explaining the importance of using a round brush with plastic bristles to get the knots out better). He would tuck us into bed, and he would say the same two phrases in Farsi before exchanging a kiss and shutting off the lights: Doostat daram, azizam. Boos bedeh (I love you, my person who is very dear to me. Give me a kiss).

 This was the routine. In retrospect, I don’t think my brother and I ever questioned it. We were taken care of, we were happy, and most importantly – we were loved unconditionally, by both of my parents, more than we would ever know. 

 After eight long years of darkness, my mom made a full recovery. In moving forward, we all recognize the importance of acknowledging the past while simultaneously moving forward. 

Nevertheless, the truth remains: my dad was a beacon of light during our darkest times. 

The day I turned thirteen, I suddenly became too cool to exist. Too cool for Indiana Jones, and definitely too cool to play video games with my dad. Too cool for bedtime routines, and for all of the structure and fun and wonder my dad had attempted to instill into me and my brother in our childhood. I wanted to spend all my free time with my friends, and my dad became a fallen hero. He was no longer a beacon of light; he was just another dad yelling at me to clean my room and to stop staying up so late on the computer.

This continued as I grew older and went to college. I still loved my dad, but I stopped taking the time to do the things that made our relationship special. I wanted to be independent, a word with a definition I still struggle with today. I thought that independence meant getting drunk on the weekends with my friends and only calling my parents once they texted me, concerned as to why they hadn’t heard from me all week. I spent my breaks binge watching Mad Men alone in my bed until 4 am and sleeping in until 10 am the next day. I opted to stay in bed and read when my dad wanted my company as he made dinner or ran to the supermarket. I was independent and detached from my parents. I no longer needed my parents to take care of me; I had “grown up”.

As most loving parents do, my dad let me grow up – and with a smile on his face. 

 Sitting on the hospital bed, waiting for my dad to finish smoothing out all the gnarls in my hair, I started to question my independence. Does independence mean truly being on your own? I am 21 years old. I can get into bars without getting my ID taken away, I can get a tattoo or a piercing without needing my parents’ signatures, and if I really wanted I could smoke a pack of Marlboros and then head over to a strip club.

In many ways, I am independent. I am a full time student, work part-time (in many different places), pay for my gas and entertainment, spend countless hours on the phone with my insurance company when my Remicade isn’t re-approved fast enough, and try not to bother my parents if I can help it.

We would all like to think we are completely independent, but the truth of the matter is that we are not. We are connected. We all experience hardship – whether it be Crohn’s Disease, loss, heartbreak, disappointment, or even breaking your toenail because you wore flimsy sandals and weren’t paying attention (me). No matter how big or small the hardship, our independence isn’t what gets us through it – it’s the love and support with which we surround ourselves.

And let me tell you -  no one gets the knots out of my hair better than my dad. 

Lesson 3: You are never too old to need your parents and to let your parents need you.  

Lessons from a Hospital Bed: Everybody Poops

By Sara Ghassemzadeh

Before I start, I just wanted to take a moment to thank everyone who read my first post. The feedback that I received (on social media and privately) was so wonderful and overwhelming, and it meant the world to me. With that, I’m excited (and also a little nervous) to share with you my next post. 

I’m going to be totally honest with you.  

People who don’t know me would probably describe me as a “chill, go-with-the-flow” kind of girl.

This is a blatant lie. 

I must be in control at all times. I could go into detail about the wide variety of ways that I micromanage everything, but I feel they will slowly reveal themselves through this blog. Instead I leave you with this: if I am not in control of the well-orchestrated, finely-tuned machine that is my life, I will combust, and that is a promise.  

I was first diagnosed with Crohn’s in May 2014, right after I had finished moving into a new house near my school, started working in a neuroscience research lab, and was taking organic chemistry and behavioral statistics (was still on a premed kick at the time). 100% of my life was consumed with things unrelated to Crohn’s Disease, and it was going to stay that way. 

I took my Entocort every morning, and life was great. 

My delusional motto that summer, adopted primarily to assuage the concerned looks of my loved ones when they found out I had Crohn’s went as follows: 

Yes, I have Crohn’s, and no it doesn’t interfere with my life at all! Yeah, life is pretty much the same, and it’s awesome; I love living in New Brunswick. Yeah, organic chem is horrible, but when it’s over I’m gonna party!

Crohn’s Disease is not a digestive disorder. It is an autoimmune disorder. Just for reference, other diseases listed as “autoimmune disorders” include, but are not limited to: Lupus, Multiple Sclerosis, Rheumatoid Arthritis, and Grave’s Disease. Although Crohn’s Disease is not deadly, when unmanaged, its complications can ultimately lead to death. I failed to understand this in my la-la land of “I have a stomach ache but I’m okay”.  

My month of “feeling great” came to a screeching halt about halfway through June 2014. That’s when the pain started. 

I am truly in awe of the fact that I am about to talk about about shit coming out of my actual asshole in graphic detail, knowing full-well that my family, friends, boyfriend, coworkers, classmates, social media acquaintances who are sort-of-friends-but-wouldn’t-publically-acknowledge-me, and even random strangers will be reading this. 

Whoever you are, if you are still reading this, buckle up. You will never look at me the same way again. 

It started with this aching pain every time I went to the bathroom. I quickly dismissed this as a side effect of diarrhea, a symptom I had grown very accustomed to. Over the course of two weeks, this mild pain evolved into quite possibly the worst pain I have ever experienced in my life. I could not move; attempting to move literally felt like someone was twisting a serrated knife inside my asshole. I was running a 103 fever and going to the bathroom like I had dysentery and having that food immediately exit my body in the most painful way imaginable. Even without eating, I was still running to the bathroom 10 times an hour, while excreting substantial amounts of nothing but bile acid. 

I had developed a perianal abscess, an infected pocket of skin that was filled with pus. That’s why I had the fever, and why I legitimately could not move without feeling like I was being forced through a medieval torture device by Jigsaw. 

When I wasn’t practicing for my upcoming role in Saw VIII, I was binge watching 30 Rock and learning about stereoisomers like nothing was wrong. Then, I would ride the empty summer bus to my research lab in the fetal position, trying not to cry or think or breathe as the bus driver decided to use the ride as an opportunity to speed directly into every pothole Rutgers University had to offer.  

Like I said, totally cruising along. Crohn’s was not going to get me down.

My mom finally stopped by my house in New Brunswick and was appalled at the state of disease in which I had been “functioning” and I went to my home-away-from home: Mt. Sinai Hospital on the Upper East Side of Manhattan.

Shortly after my arrival, a nice man whose actual name is failing me but for all intents and purposes was Keanu Reeves (Bill and Ted’s Excellent Adventure and NOT The Matrix) kindly informed me that I was going to need surgery. Then my gastroenterologist told me I was going to need surgery. Then my surgeon told me I was going to need surgery. From what I could surmise, I was going to need surgery. 

Somehow, I had kept it together throughout the entire process. Everything was great – in fact, I had been in touch with my professors, explaining that I would still be able to take my behavioral statistics exam later that week.   

After you get surgery on your rectum/anus/anything involving your bowels, your doctors tell you three basic things:

  1. You need to try and pass gas. This is to ensure that your intestines are contracting regularly. Some patients will develop an ileus after bowel surgery, when peristaltic contractions temporarily stop and chaos ensues. 
  2. You need to try and walk around. This activity is apparently encouraged to stimulate bowel movement. I can promise you that this ten foot crawl across your room and then back to your bed is nothing short of demoralizing. 
  3. You will temporarily lose control of your bowels, and it will be painful. This means exactly what you think it means. If this means nothing to you, you’re about to find out.

Later that day, I finally tried to walk around, like Keanu Reeves kept fucking telling me to (“Did you pass gas yet? No? You should really try.” PLEASE SHUT UP I WILL DO IT EVENTUALLY.)

I stood up, and attempted to walk, and felt like I was going kinda/sorta/maybe pass gas.

Hey, this is awesome! I’m better already. Maybe I can go home and take my Stat final. I could really go for some pizza right now.

But I didn’t pass gas. You know what happened? I shit myself.

There was no one in the room but me and my mom, and yet it was one of the most humiliating experiences of my life. I had lost control, literally. And for the first time, I felt the gravity of my situation. Everything wasn’t okay. I was sick, and I had a chronic illness, and it just wasn’t okay. 

“What happened?!?” My mom looked up from her phone and immediately rushed to my side. I burst into tears.

“I pooped my pants, and I don’t know what to do.” I wailed, collapsing back onto the bed in pain and disgust. My sobs deepened as I realized that my sheets were probably soiled as well and Keanu Reeves was going to have to get involved in this which meant our wedding was most likely off.

My mom couldn’t help herself. She took one look at me and burst out laughing. Before I knew it, I was laughing too. My mom and I laughed as she helped me to the bathroom and a patient care associate came to help me clean up and said that this was a good thing, because it meant my body was recovering and my bowels were moving. Oh they were definitely moving. The horrifying realization that I had shit myself and was literally sitting at rock bottom became funnier and funnier to me. 

I am not a perfect person. There are many moments where I feel powerless and weak and I wonder if I’m ever going to feel like a functioning person. These moments happen even today. 

It wasn’t the first time I had lost control of something in my life, but it was the first time that I was able to truly find humor in it. And if I could laugh off shitting my pants in a public place, I could definitely find a way to come to terms with my Crohn’s and all of the perks with which it came.

My first week at Mt. Sinai Hospital drew to a close. I had a few minor complications from the surgery that resolved themselves during my hospital stay. I had showered once over that 7-day period. My elbow length hair had gradually formed a single knotted mess. I left the hospital with a new medication in my battery, a biologic called Humira, which I had to inject into my thigh once every 2 weeks. Humira is kind of like an Epipen except it feels like battery acid as it seeps into your body. 

My doctors were optimistic that I would continue to recover, but warned me that there was a good chance I would develop another abscess (I did) and that the Humira was not a permanent solution, and could potentially wear off (it did), and that when it did wear off I would end up having another flare and end up in the hospital (10 times) and would potentially need a resection surgery (Happy Cinco de Mayo 2015).

I had finally accepted that this was my life now, but it wasn’t a death sentence. It was going to be okay. 

That’s my lesson for this week:
The only thing you can truly control in this life is your attitude. And it makes all the difference.  

Lessons from a Hospital Bed: Dating with Crohn's

By Sara Ghassemzadeh

Even before Crohn’s Disease maintained a presence in my life, I hated dating. Here’s a general picture of what my dating life used to look like before Crohn’s. It usually panned out in 3 phases:

Pre-date: I sit in my room deliberating what I want to wear.

Read as: Lie on the floor of my room yelling on the phone at my friend for setting me up with this guy in the first place when it is common knowledge that I haven’t done my laundry in 2 months and have been stocking up on $3.99 underwear from Rite Aid in the interim

Date: Get coffee/lunch/dinner with aforementioned guy. 

Read as: Contemplate whether it would be believable or not for me to fake a panicked phone call from my roommate begging me to rush home ASAP because the house is on fire as I watch aforementioned guy aggressively shove a burrito into his mouth.

Post-date: I delete his phone number and never speak to him again. 

Read as: This is what actually happens, no subtext. 

 Dating with Crohn’s is a different kind of nightmare. When you first start to date, you want to be perceived as the best possible version of yourself. However, there is nothing cute about getting up to use the bathroom 6 times throughout the course of a meal to shit your brains out, and nothing sexy about having a seton (the surgical equivalent of a plastic hairtie) placed in your rectum to allow for continuous drainage of your abscess. There’s nothing fun about a person who orders water when you meet up for “drinks” because you weren’t able to eat anything that day while you were in a mini flare. And it’s particularly hard to keep up the allure when you have a really bad day - where you run to the bathroom 15-20 times and become so dehydrated that you have to lie in bed chewing on saltine crackers and ice so you don’t faint when you finally decide you have the strength to stand up.

 I must have had a massive stroke because all of this logic flew out the window when I met someone I really liked. For the sake of privacy, I will affectionately refer to this someone as “Loverboy” for the remainder of this post. We have our first date, and it goes beautifully. No symptoms. No pain, no nausea, no diarrhea, no fatigue. Nothing. I tell him I have Crohn’s and show him my scar and he remarks that it looks kind of cool. Wow, I think to myself. Maybe it will be easy this time.

 Second date rolls around, and it goes something to the tune of this: I spend the night at Loverboy’s house, and have to wake him up at 7:30 a.m. on a Saturday because I began puking in his bathroom from 6 a.m. with no end in sight. He needs to take me to the hospital because I recently had an ileocolic resection due to a bowel obstruction (a section of my intestines were so scarred, inflamed, and ulcerated that food no longer could pass through that section and it had to be removed), and although my vomiting was probably innocuous, a CT scan was necessary to confirm that I hadn’t developed strictures or another partial obstruction. I frantically explain this to him, as I shake him awake and pace impatiently in place as he groggily rolls out of bed and searches for his keys to drive me to Robert Wood Johnson Hospital.

The rules for dating with Crohn’s are no different than dating for any other human being: be with someone who accepts you wholeheartedly for who you are.

After about a million apologies in the car, I figured my last sighting of Loverboy would be from the back as his white Subaru rolled away from RWJ’s Emergency Room entrance. 

Instead, he tells me he’s going to go park the car and then come meet me inside.

The rest of the emergency room visit goes the way it always does: I change into a hospital gown, roll off my list of medications, rate pain on a scale of 1-10, give a urine sample, get some fluids, and finally my personal saviors: Dilauded and Zofran. Nothing out of the ordinary here, except for the fact that there is one Loverboy sitting next to me reading To Kill a Mockingbird. He smiles and laughs at the way I sigh with pleasure and relief when the nurse pushes the IV painkillers, and they immediately kick in.

My mom drives an hour down to the hospital to make sure I am okay, and Loverboy is still here in spite of the multitude of received warnings. I am wheeled off to get a CT scan for an inordinate amount of time, and Loverboy gets lunch and coffee with my mother. Upon my return, they are exchanging pleasantries like it is the most normal thing in the world.

I couldn’t think of a more wonderful gift to bestow upon Loverboy than a private meal with my mother on this horrifically extended second date. 

 When my mom leaves the room, Loverboy kisses me even though I taste like vomit and death, and I’m pretty sure there are still chunks of vomit lodged somewhere in my nasal cavity. I haven’t brushed my teeth in at least 24 hours, and he says it isn’t that bad. He sits by my bed and holds my hand, and we share headphones as I force him to listen to the score of the third Pirates of the Caribbean movie until the nurse comes back and tells me that I don’t have a partial obstruction, just that I need to avoid eating sketchy egg-salsa-mystery meat-bowls from diners at 2:30 in the morning.

 I go home from the hospital that night, and I think about the fact that Loverboy spent his entire Saturday by my side in a cramped emergency room cubicle. I wonder how he feels about that because it certainly wasn’t a strange way for me to spend a Saturday. 

I realize I’ve been to the hospital so many times this year, that if I had a punch card, my next (10th) visit would be free. I realize that this is probably not how Loverboy had planned to spend his Saturday or any day of his life for that matter. I realize I have spent about 3 months at an incapacitating level of illness  during the 2014-2015 school year (home sick, hospital admits, ER stays, recovery) and realize this sort of state isn’t exactly conducive to the start of a new relationship. In fact, I think it is the complete opposite. 

Crohn’s as a physical disease may be manageable, but I’ve often found the psychological and social impacts of Crohn’s at times to be impossible. It is frustrating, it is gross, and most importantly it is alienating. 

I mentioned earlier how when you first start dating someone you want to exist as the “best version” of yourself, preferably one that doesn’t spend Saturdays in the emergency rooms puking into a bedpan. 

Later that night, Loverboy texts me and somehow (like he always does) quells all of my concerns in a single message: “You managed to make seven hours in a hospital a really enjoyable experience. I like you and I like where this is going.”

 With that, I want to share my first lesson:

The rules for dating with Crohn’s are no different than dating for any other human being: be with someone who accepts you wholeheartedly for who you are.