Updated: Apr 28, 2022
Transcript of YouTube Video (written by Kaitlyn Holly):
In 2020 I ate a peanut butter sandwich and threw it up. I thought it was a stomach bug, and that it would pass in a couple of days. It is now 2 years later, and I still vomit everything I eat and sometimes even the things I drink. Amidst the pandemic I had to navigate the medical system that was already overrun. Isolated from the rest of the world I battled this illness alone. Sure, I had my friends and family, but no one really knew what I was going through. I withered away until I was almost nothing. I was hospitalized the week prior to the fall semester, and then I completed my fall semester of school online. I tried to come back to school in the spring of 2021. I was unable to keep down any foods or liquids, and lost 35 pounds over the course of less than 6 months. While at school I continued to practice with my team because after losing my freshman season to COVID, I couldn’t imagine another season not playing. On February 14, 2021 I got picked up from school and went to the hospital. Little did I know what was going to happen to me. I spent a month there, where I got tested for many things, and still had no diagnosis. I met so many doctors and nurses who made me feel seen and heard, but still, I left defeated, having no idea what was wrong with me, and completely dependent on a feeding tube.
During this admission, I made the hardest decision I’ve ever had to make – I couldn’t possibly return to school that semester. I had missed too much with doctors and nurses coming into my room all hours of the day while I tried to take class hooked up to an IV pole and feeding tube. I was overwhelmed. I also didn’t have the mental energy, my brain was foggy all day long. I could barely walk one lap around my floor, how would I walk around campus if I went back? Never in my life had I thought that I would take time off in college. I was expected to complete high school, go to college and graduate in four years. But now, I couldn’t possibly finish out the semester. So, I medically withdrew. My doctors respected my decision, and my parents knew that I was doing what was best for me, but I was scared. The rest of my hospital days were spent playing scrabble, card games, coloring and Facetimes with friends. It was depressing being trapped in the same room for so long, I hadn’t been outside in nearly 30 days, and it sucked. My doctors saw that I was sad, and decided to surprise me. They brought me a medical student. They knew my aspirations of becoming a doctor and allowed him to take me on a walk outside to the courtyard where I could poke his brain about life and medical school. He was 30 years old and in his 3rd year, not something totally normal so it was nice to have the insight of someone with a different path. When we got outside I got out of the wheelchair put my arms up to the side, let the sun hit my body and smiled. I felt helpless, but in this moment, I felt joy and hope.
I worked with a phenomenal psychologist to attempt to retrain my body to keep food down using cognitive behavioral therapy, and it was one step forward and three steps back for months. I was hospitalized again the day after my 20th birthday where I received my second feeding tube. I was hoping that 20 would bring me better luck than 19, but this time, I was connected to a pump 24/7 and had to carry a backpack around with me. Having a feeding tube, especially when most people considered me to be “in the prime of my youth” was incredibly demeaning.
At the beginning of August, I underwent a grueling test to determine the cause of my vomiting: Rumination Syndrome. It felt like a weight had been lifted off my shoulders. All the doubt and pain I had endured up to that point seemed worth it because I finally knew what was wrong with me. The only problem was that it is considered to be rare, especially in adults. I would have to continue my med regimen (~15 pills daily), and see my psychologist to continue working on techniques to suppress the vomiting. My doctor submitted my case to one of two hospitals in the country that specialize in treating it, but it would be a long while before I would hear back. The fall semester was coming up, and there was a lot of uncertainty for me. Would I be able to play softball, or was I done being an athlete forever? Certainly with the nasal feeding tube I wouldn’t be able to play. I also had mounting anxiety. I hadn’t been around people my own age for quite some time. I spent a year and a half at home with my parents and saw my friends once or twice a week. It also loomed over my head that many of the friends I had made freshman year may not even remember me, or if they did, who knows if they would still talk to me. I didn’t know how I would exist at school when I couldn’t eat anything. And so, I communicated my concerns with my doctors and we decided to go ahead with the surgical feeding tube. We didn’t know how long it would be until I could eat again, and the surgical feeding tube would at least give me some peace of mind in social settings without worrying about how I was being perceived. I also made the difficult decision to live alone, as someone who had been alone for nearly a year and a half, this wasn’t something I was too keen on. I felt as though I would be a burden to whoever I lived with because the pump runs all through the night and could beep at any point. I have made so many great friends living in the dorm buildings as opposed to the apartments, but still I feel isolated.
The surgeon however told me some of the greatest news I could have possibly received: I would be able to play softball normally. Coming back to school was hard, I didn’t know how to exist in a classroom, a place where I have felt so comfortable in years past, I didn’t know what to do in a lab ( these are obviously important skills for a biochemistry major) . On top of a rigorous fall semester, I was picking up a softball for the first time in a year and a half – not to mention it was at the division 1 level. This was the longest break from softball I have ever taken. My teammates and coaches gave me grace, but they also pushed me. No one treated me differently. But I must admit I had and still do, a bit of imposter syndrome when I step on the field. I didn’t play for so long, and now here I am on a field with people who won a conference championship last season. How was I going to compete for a spot? I felt behind, and my body is constantly tired.
As the fall semester ended, I received a phone call that I had been accepted into the hospital program for treatment. They said it could be a little bit, as they are booked. So I patiently waited but continued to work on eating. I began to gain a little traction over break when I was put on a new medication, and there was hope. When I returned to school for the spring semester, all progress was lost. I couldn’t eat anything anymore. I would have to continue to rely on my feeding tube. It is incredibly disappointing, but in order to keep moving forward I would have to accept it.
Eating is so social, and it is a part of my life that has been gone for over 2 years at this point. I dread Holidays because I can’t sit and enjoy a meal with my family, instead I have to watch them eat. Don’t get me wrong, spending time with my family is lovely, but it gives me great guilt that I cannot enjoy the time with them because I am disappointed in my inability to take part in the meal. I go to the dining hall for every meal, it keeps me out of the room. But I get uncomfortable, I tend to see the same people there time and time again, what if they start to notice that I don’t actually eat anything? When the softball team traveled to California we went to In-N-Out, and I was heartbroken that I couldn’t eat anything: I got a hat and laughed it off. In Louisiana the team got some traditional southern cuisine; crawfish and gumbo. 3 years ago I wouldn’t have even cared that I couldn’t eat it because I was picky. But now I realize how fortunate I was to have the ability to try all these different foods. At games the team gets deli sandwiches, and the bench enjoys gummies. I stand there with a smile on my face and drink a diet coke or a cup of coffee. It really is the little things. I even have a list of the first foods I want to try when I can eat again.
This semester has been one of the hardest times in my life. I have cried more times than I would even like to admit. But over the course of the last 2 years I held it all in because I thought I had to. If I sat down to think of the gravity of the situation it would eat me alive. I coped with humor most of the time, and continue to do so. If I let it weigh me down, I don’t think I would be able to get out of bed in the morning. I will continue to hold on to hope that soon enough I will be able to eat again.
It has been a blessing to get back to the life I left behind when I vacated campus in March 2020, and sometimes I mourn the life I used to live, but I can say that I am so grateful for this journey I have been on. The anxiety, depression, highs and lows and everything in between has been so difficult to deal with but I wouldn’t have made it without my incredible friends and family. It’s not everyday you see a Division 1 athlete with a feeding tube, and in sharing this story with you, I want you to know that anything can happen. You don’t know what life is going to throw at you, so celebrate the little things.