When I was 8 years old, I was throwing up everything I ate and I had dropped from 150 or more pounds to 69 at my lowest. My parents were terrified, and there was talk of putting me on life support because they just couldn’t figure out what was wrong. We cycled through the ideas of celiac disease, eating disorders, and ulcerative colitis.
After a long process, which included a colonoscopy and endoscopy, where a camera was fed through my entire gastrointestinal system, they finally diagnosed me with Crohn’s Disease. This disease was nothing new to my family. My dad had it and many family members had experienced it before him. The issue was that Crohn’s Disease typically skips a generation, so there was no reason my brother or I should’ve had it.
In the sixth grade, when I was 12, I spent a week out of school because I was throwing up everything I put in my body again. When the doctors got my blood work back, they called my mom and had me pulled out of school. In a flurry of paperwork and doctors’ faces, I was in the hospital, where I stayed for a week. This was easily fixed by a change of medication: from a three hour infusion every month to an at-home shot every week.
In the midst of all this, I was also wrestling with my sexuality. I had always had the fear of not being straight because my dad and his side of the family were very conservative. I thought about people like Fergie and Megan Fox and knew there was always something there that was more than just “a pretty Hollywood lady.” I went between the label bisexual and lesbian, but always in secret. In the summer of eighth grade, I settled on a label: pansexual. Pansexual means that, regardless of if a person is male, female, or non binary, I can fall in love with them. Now that that was starting to get ironed out, I just had to get my health in order.
In freshman year, I finally came out after years of deliberation. October 5th, 2016. I couldn’t make myself do it in person, so I sat outside my school, on a cold wire bench, and wrote out a short Facebook post.
I didn’t feel the need to explain myself. Of course, I defined the term because it’s a much smaller community, but other than that, there was no need to defend myself.
Due to his Crohn’s, the cancer ended up in a state of metastasis, where it spread from his lungs to his hips and back. From this, he ended up at the Mary Free Bed Rehabilitation Hospital in Grand Rapids. It was hard to have him so far away for extended periods of time. Once, he had to get back to the hospital quickly at 4:00 am, and I was in a panic, both worried about him and also about how I would get to school. I was given the opportunity to stay home, but I refused. School had always been a priority for me, and if I could be there, I wanted to be.
One of his trips to Mary Free Bed ended a day or two before Thanksgiving, and this would turn into a point of contention for the family. Obviously I wanted to spend the day with my dad, fresh out of recovery, but I also wanted to spend the day with my mom’s family, who were just as important to me. My two families didn’t really get along, but they always wanted what was best for me. In the end, we reached a compromise, and I just spent a few more hours with dad’s family before going to mom’s side. This would be the last Thanksgiving that I got to spend with my dad.
He was dependent on morphine and needed me for just about everything. We often joked that I was his primary caregiver, but it wasn’t a joke. I was prohibited from having my phone on Do Not Disturb, I had to be aware of how to clean and operate his sleep apnea mask, I memorized his medication, and I quickly learned how to change his oxygen tanks. He had a free standing toilet that he kept next to his chair in the living room. He was in so much pain one day that he couldn’t turn to wipe himself. He stood up and asked me to do it for him. I was fully his caretaker.
I had teachers ask me if something was wrong at home because I was constantly falling asleep in class and I had dark circles under my eyes. If I went to bed at 11, he would call me at 12:30, keep me awake with him until 2:30, call me again at 3:30, and let me go back downstairs at 4:15, for me to be awake at 5:45 to make sure his breakfast was done. I was barely existing.
This went on until Christmas Day. The tradition was always to wake up at my mom’s, eat breakfast, open gifts, go to Dad’s, have breakfast part two, open gifts, and then go to my maternal grandma’s. Christmas was always full of joy, but this year it had a somber overtone. My dad just wasn’t himself. We tried to get him interested in what was happening, but it just wasn’t working. Eventually my brother and I just gave up. We left the rest of our gifts at his house in the hopes that he’d be back to himself and in normal spirits soon. We were told later that night that he was back in the hospital.
My Christmas gift from my mom was tickets to see Hamilton in Chicago. I was ecstatic. While we were there, I caught a glimpse of normalcy: we saw the show, had dinner, and went to bed happy. It was short lived. She woke me up early the next day, January 6th, in tears, telling me dad had taken a turn for the worse. I stayed in the hotel bed for a few hours, with my head on my mom’s lap, until I felt okay enough to do the drive back. We met my stepmother and brother at the hospital and were faced with the hardest decision of our lives.
His “turn for the worse” meant that he was on life support and we had to start thinking about end-of-life plans for him. The decision was left to my brother and my step mother to make, and while they were deliberating how and when to take him off life support, I went to see him every day. I sat at his bedside for hours. Nurses and doctors came and went, everyone urging me to talk to him. I couldn’t. He was already lifeless, his skin pale and shiny with sweat. I just wanted to be there.
For how traumatic sophomore year was for me, junior year was quiet. Obviously, it wasn’t enjoyable, because who enjoys standardized testing and the beginning of the International Baccalaureate program? But I was making new friends and I was generally happy.
Then, during final exams, I began having stomach problems. And not just a stomach ache, but debilitating pain. I couldn’t stand up straight and I could barely walk. I avoided telling my mom for as long as possible and went about my normal life.
We were on a trip to Chicago when the pain just became too much. I couldn’t even enjoy our sightseeing. I refused to ruin the trip, so we continued doing tourist things and we saw a musical. When we left, my mom was scheduling appointments with doctors to find out what might be wrong.
On Wednesday of that week, my doctor had me do an array of lab work: blood work, a urine test, an x-ray, even a fecal sample. Once he had the results, whatever he had seen worried him enough to schedule a CAT scan on Friday. The only reason he didn’t schedule it for the next day was because I needed to not eat before the CAT scan for 8 hours. It was apparent that the situation, whatever it was, was serious.
If you’ve never done a CAT scan, they force you to drink this horrible concoction to light up your insides in the scan. I would call it a beverage, but that’s an insult to beverages. I’ve always called it thick, chalky, artificially berry flavored milk. Just thinking about it makes my stomach churn.
We had the results read right there and the doctor said there was a hole in the lining of my intestines with the possibility of a burst appendix. He also couldn’t be sure, but he thought my intestines were totally blocked from the amounts of scar tissue I had amassed due to flare ups with my Crohn's.
My mom and I were in full panic mode at that point. We were calling my family and both of our jobs. Well, rather, she was. I was busy crying. When we got to the hospital, we had to wait to get a room. Once we were in a room, I was poked and prodded too many times to count. I was prohibited from eating or drinking anything: I got all of my nutrients from an IV.
A marker of my inflammation called the C-Reactive protein was supposed to be around a six. When I was admitted, it was 126. They started me on IV antibiotics to bring the inflammation down, which it did relatively quickly.
I was without food for three days straight. I only got through it because they kept a steady stream of doctors and therapy coming to me. This is actually where my love of painting started. I was able to build a wooden box and paint it with the art therapy woman. It was the only thing that kept me sane the entire time I was there.
It was quiet for the most part. There was a little talk of surgery, but I was adamantly against it. The idea of it terrified me. Deep down I knew it was the best option, but the idea of it was too much.
I wasn’t going to let this affliction keep me from working though. Once we had an idea of what was happening, I had my mom bring my laptop so I could continue writing all the articles I wanted and get my staff’s work on the website in a timely manner.
When I woke up, the nurses told me I would have to wait 24 hours to do an MRI, so the contrast could leave my body, or I could do a CAT scan. Neither were optimal, but I wanted this over as soon as possible, because there was talk of discharge the next day, so I tried to drink the CAT scan contrast. I barely got three drinks before I threw up again. I was too exhausted to try anymore, so my mom brought up a muscle relaxer and an NG tube. An NG tube is fed through your nose and nasal cavity, through your throat, into your stomach, so that liquids can be pushed through.
They pushed a muscle relaxer through my IV. From here, I only know what I gathered from my mom. I don’t remember any of it. Once they got the tube all the way into my stomach, I threw up, for the third time.
This is about when I started knowing what was happening, though it was blurry and spinning. Once I threw up, the tube ended up kinked up in my throat. They didn’t know that though, so they blew air through it to make sure it was all straight. Obviously, it wasn’t. So they brought up the mobile x-ray machine and gave me an x-ray right in my bed.
When it was shown that the tube was kinked, they didn’t think forcing it back in would do any good. So they took it out and let me come back to consciousness for a little bit before asking what I wanted to do now. I decided I would do another muscle relaxer and try the CAT scan contrast again.
While they were pushing me the next relaxer, the nurse offhandedly mentioned another contrast. According to her, it was a lot less but it tasted a lot worse. I figured there was nothing to lose, so she double checked that it would work, and came back with a 16 ounce cup of Sprite. She said I had to have it done in 30 minutes. I started drinking and didn’t even notice there was anything in it.
When the nurse came back to check on me in 10 minutes, I had the cup drained. I honestly did not believe she had put the contrast in at all. She just laughed and made the next cup in front of me. The contrast was about 2 ounces of the entire 16 ounce cup. So, they gave me an hour to drink 32 ounces which actually took me 15 minutes to drink.
I was hopped up on two muscle relaxers, so as soon as I was able to lay down, I was dead asleep. I slept for fourteen hours straight and it was heaven. To make matters better, when I woke up, I received great news. My C-Reactive was down to 22, my CAT scan came back clean, and I was able to eat real food. Even better, if the food stayed down, I would be discharged the next day. That is exactly what happened.
I was admitted for a full week, and only one of those was I able to actually eat. I was lucky enough to have been discharged just three days before one of my favorite camps of the year, for kids with Crohn’s Disease.
So, we scheduled a surgery: an ileostomy to be exact. This removed where my large and small intestine met, including my appendix, and reattached them. I was terrified for the longest time. I had to trust my doctors, but my anxiety simply wouldn’t let me.
The day of my surgery, the nurses could tell I was scared. They gave me a little bear with a Bronson’s Children Hospital shirt, a hair net, booties, a twin hospital bracelet to my own.
My stress came to a quick culmination when the anesthesiologist came and tried to put the needle in my hand. I started crying immediately and begged her to put it in the crook of my elbow. She conceded, but told me scar tissue would build there so they couldn’t put it there eventually. That was a problem for a different day, and something that I couldn’t think about then.
I was more than grateful for the return of art therapy. It gave me something to actually do besides walk, sleep, fart, repeat. I was even asked to paint a piece that hung in the lobby of the pediatrics ward by the time I left.
Once I was discharged, I had two weeks of bed rest, but after that, I was ready to start senior year. High school has been so, so hard. It was one of the longest periods of my life and these hardships only stretched it farther. One night with my dad felt like a day, a week. When he was gone, one day without him felt like a year.
While these things pressed on me, normal high school trials also raged in the background. I gained and lost friends, struggled in classes, went through relationship mishaps, the whole nine yards. I hold proud that through every single hardship life threw at me, I still stood tall.