The Joys of Eating, Or Not

I have always had difficulties eating by mouth. When I was a young child, I could eat everything, but I couldn't maintain my weight. My dad usually would give me an instant breakfast shake and a pop tart in the morning. On the weekends, my dad liked to give me milk with a little bit of coffee and Girl Scout cookies. He would dunk the cookies into the coffee milk to make the cookies softer. Besides, it tasted delicious!

My mom loved to give me oatmeal during the busy school mornings. She rushed me to eat oatmeal so much that oatmeal tasted awful, like wallpaper paste. During college, on the weekends, my mom found a new recipe for Alfred's Sweet Omelets. It was whipped eggs that were baked and topped with jam. I loved it!

I got the G-tube in middle school to help me gain weight. My parents were worried because I was 14 and just 60 pounds. My mom convinced me to get the G-tube by telling me that my breasts might come in if I got more nourishment. So I got the G-tube surgery. The doctors made several little incisions on my belly. They place my G-tube on my left side below my ribs. My first G-tube placement surgery went smoothly without any issues.

During my senior year of High School, my G-tube site grew up into my ribs, and the little water balloon in my stomach that holds my M-Key in place kept popping, and my G-tube kept falling out. My parents knew how to change my G-tube M-Key. My mom often had to put another M-Key in me with my Golden Retriever service dog on my lap because he thought she was hurting me, and we couldn't convince him otherwise!

While I was recovering in the hospital from my second g-tube placement surgery, I got a pleural effusion or fluid on my lungs. I had to get a lot of respiratory therapy. Luckily, I recovered in time to go away to college.

When I first got the G-tube, I could still eat by mouth, so my mom allowed me to have dessert for breakfast sometimes. I remember once a waitress looked weird at us. We laughed when the waitress walked away. Some people were always nervous when I ate. Even the doctors said I should only have soft foods when I did the swallow studies, but of course, I was stubborn and ate what I wanted. I thought they were overreacting.

For example, my High School heard about when my special education teacher for reading was feeding me a hotdog, and she almost had to give me the Heimlich maneuver, and my High School wouldn't let me eat by mouth at school. I rolled my baby blues! Of course, my aides at school sometimes secretly gave me food. When my teachers came around, I would stop chewing. I was sure they knew because I was a messy eater, but they never said anything to me. We didn't do that very much because my aide was afraid of getting caught. I thought the rule was stupid because I could constantly cough stuff up.

However, when I was 33, the food started to go into my lungs when I ate by mouth, and I couldn't tell anymore when it was happening.   I was in the hospital for pneumonia three times in one year. I angrily decided to listen to the doctors and stop eating by mouth because I almost missed my art exhibition that I had taken three years to prepare because I was in the stupid hospital! I was so mad, but I didn't want to live bouncing between home and the hospital.

It was very hard for me to accept. At first, I would cheat a lot with my parents and friends. Once, during the COVID pandemic, I was in the ER; I got the results from the chest x-ray when the nurse said it looked like COVID. I was so scared that I cried loudly. It was before the COVID shots came out. My dad had to help me to calm down. I was so relieved it was just pneumonia.

After that, I was better about not having food by mouth. I'm not perfect, and I still have a little taste once in a while. The holidays are the hardest when I watch my family enjoy delicious food. My best friend gave me a saying that really helped. No food tastes as good as healthy feels!     I still want to be included in family dinners, so I remind myself that it's a perfect time to talk while people have their mouths full.