Note: Y’all asked for it. Y’all got it. I’m not beating around the bush this time. This is really what Cystic Fibrosis puts me through on a regular basis. And, if this writing turns out to read like a rant and/or an angry letter, then I met my goal for this piece. Just let me know if you think I went too far so I don't get sued.

One evening, no more than a few years ago, I went to a dinner party with my mom at one of her many friends’ houses. This friend was fairly new to us. My mom met her shortly after we moved to Littleton, so she didn’t know us too well, hence the dinner. The dinner was alright, but none of the food really agreed with me. It was a very fancy dinner; far too fancy for me. Everything was heavily spiced to the limit and had thick dressings all over it. I could tell by looking at it that I’d suffer some pretty grave consequences if I ate just a bite of that stuff. 

Cystic Fibrosis has taken its toll on my pancreas. I was unable to digest anything at birth, because CF had already clogged my pancreas up with enough mucus to prevent it from releasing any of the digestive enzymes it produced into my digestive tract to digest my food. Given some time, my pancreas would effectively destroy itself with the digestive enzymes it produced but could not eject. It would take longer than what you'd think, because my pancreas will attempt to heal itself as its own digestive enzymes destroy it, causing a lot of scarring to build up over time.

If my pancreas didn't destroy itself that way within my lifetime, it would eventually get so clogged up with mucus that it will stop producing insulin as well. I've relied on enzyme pills made from the raw, ground-up pancreases of cows and pigs ever since I was a newborn to digest my food, but they're not the perfect fix and never will be. The heavier the food is, the less likely my enzyme pills will digest it. Whatever I don't digest just goes right through me, rather painfully and explosively. However, that's much better than the alternative, which is not taking my enzymes at all. If I didn't take them at all, I'd eventually die from starvation. 

I found myself in a dilemma; if I didn’t eat, then I’d probably be perceived as rude and called out for it, but if I did eat, I’d definitely have a gastric exorcism in no more than a few hours. Since I was way more afraid of being publicly shamed than destroying my toilet in the comfort of my own home, I decided to eat and just pray that nothing too horrible happened. 

My mom could tell that I was very apprehensive about eating, though she didn’t say anything. She just gave me a look. I stared at my cheesy vegetable casserole, mostly just dissecting it with my fork to see if I could identify any of the ingredients, while everyone else at the party stuffed their faces with it and remarked on how delicious it was. Eventually, I did take a bite. It didn’t taste terrible, but it wasn’t great either. It had a lot of peppers in it, and I was never a fan of peppers. Still, I continued to shovel mouthfuls of what was basically a plate full of laxatives down my throat until my plate was completely clean. When I finished, I sat back, scowled, and regretted what I’d just done. I took an extra enzyme in the little hope that it would save me from what was to come, but I knew, deep down inside, not even a whole bottle of enzymes would rescue me that night.

My mom stayed around to talk with her friends after dinner was done. As the minutes turned into an hour, then two hours, my stomach got increasingly upset. At first, it was just a mild discomfort, so I ignored it. 

Before we left, I overheard my mom’s friend say something I wish I’d never heard. 

“Sometimes, well, I don’t know…” my mom’s friend stammered, “Sometimes, I do wish I had a story. Like, a real story.”

“What do you mean?” my mom asked. 

“Well, I’m just an average mom with a healthy husband and kids. No one in the family has struggled very much. I know I haven’t. But, sometimes I wish I could go through something truly hard, anything, so I’d have a story to tell.” my mom’s friend practically whispered, “I’m sorry, Jen, but I’m actually kind of jealous of you and Maya. Especially Maya. You two have been through so much, especially her, and I think it’s well, just so amazing…”

I don’t think I’ve ever clenched up so much in my life. I had to actively tell myself not to burst into that room and get on a soapbox. Cystic Fibrosis was not something I took pride in or wished others had. It was actually the complete opposite. My gurgling stomach reminded me of how embarrassing and unpleasant my condition really was. 

On the surface, maybe it did seem like something that was cool to have in the eyes of a very boring person. Maybe I was a legendary badass with the backstory of the coolest superhero ever. However, that didn’t take away from the reality of my condition. It’s not only something that’s very dangerous, and I’ve had to work my ass off everyday to keep it at bay (which I was not always successful at), but CF is way too often more of a source of embarrassment than a source of pride and dignity. 

Thankfully, I think my mom was just as upset by her friend’s comment as I was, though she was way better at hiding it than myself. However, at that moment, I had bigger problems to worry about. I was severely bloated and starting to sweat from the tension. Once in the car, my mom looked over at me while I tried to curl up in a fetal position. 

“Are you ok?” she asked. 

“Mom, just get me home, like right now.” 

“Why? What’s wrong?” Mom asked as she dropped her body weight on the gas pedal. 

“That damn casserole,” I growled. 

I don’t think my mom’s ever sped as much as she did that night. Her friend’s house was deep in the foothills, so the roads were windy and teeming with wildlife. On top of that, it was the middle of January. Snow and black ice laid in wait for us like big bear traps with rusty iron teeth. Regardless, my mom knew that it was urgent, so she turned our puke green Honda Element into a Hennessey Venom GT. She fish-tailed around corners and pinned the throttle down straights, rarely, if ever, touching the brake pedal. By the time we finally made it to flat territory, I was squeezing my stomach with both arms, sweating profusely, and panting like a Malamute in the Saharan desert. I wasn’t sure if I was gonna survive the literal shitshow that was about to happen. 

I didn’t even wait for my mom to park the car in our driveway. As soon as I saw our house, I threw open the door and charged through the snow and up the slippery concrete stairs to our front door. Our lock was pretty quick to open once I punched in the code, but those were the longest 1.5 seconds of my life. I didn’t even bother to turn on any lights, except for the ones in the basement bathroom. My poor dog, who always expects me to pick him up and carry him around whenever I come home after any length of time, was left whimpering for me on the stairs. 

I dropped my jeans and unleashed hell on my poor porcelain throne. I also grabbed the little plastic trashcan next to the toilet and held it on my lap so I could gag into it. This severe indigestion episode didn’t last longer than ten minutes, but it left me exhausted, soaked in sweat, and still in excruciating pain. 

My mom knocked on the door and asked to come in to make sure I was ok. She found me curled over the bathroom trashcan while sitting on the toilet, absolutely destroyed. I was just thanking God the worst was over. 

“Are you ok? Do you need anything? Should I call someone?” my mom asked. 

“What? Yeah. I’m fine. I think. Just. Leave me alone.” I panted. 

“Ok. Sorry you’re sick.” my mom sighed as she gently closed the bathroom door behind herself and let me fester alone in my own self-inflicted misery. 

While I sat there, sick and shaking, my mom’s friend’s words crept back into my mind. The more I recounted what she said, the more my blood boiled. My mom’s friend was absolutely clueless of what CF really was. It wasn’t like a cool scar left behind by an angry grizzly bear, or a case of cancer that’d been defeated long ago. Cystic Fibrosis was something much worse that those two things combined. It was not going away anytime soon. It was not a thing of the faded past. I didn’t (and still don’t) expect to be cured of it in my lifetime. 

At that moment, for the first time in my life, I wished my mom’s friend would experience CF for just one hour. Perhaps, not even that long, because I knew she couldn’t take it. I was not upset by her horrible casserole. I chose to eat it, and I suffered dire consequences I anticipated before I even put a scoop of that stuff onto my plate. But I was quivering with anger thanks to her incredible ignorance. If she knew what CF really was, she would’ve thanked God a million times for not allowing her, or anyone else in her family, to have such a horrible disease. Perhaps if she looked at what her casserole did to me, the blood in the toilet would’ve been more than enough to convince her to never ask for hardship ever again. 

I spent the rest of my night curled up in a fetal position on my bed, holding a pillow and a heat pack against my stomach in an attempt to lessen the pain. It didn’t work as well as I’d hoped, but at least it allowed me to drift off into a very shallow state of sleep. My dog kept me company, and fell asleep curled up at my feet. Mom put a gallon of water on my nightstand, and expected it to be empty by morning. As hard as it was for me to drink water due to my illness at that point, over time, it did make me feel better. But the best antidote to my pain was my dog, who refused to leave my side the whole night. When my heat pack cooled off, my dog did not hesitate to take its place when I threw it and the pillow on my bedroom floor.

By morning, I was still sick, but was able to go upstairs to the kitchen and start chugging down a kombucha. My mom also made a quick run to the store to grab some kefir for me, which is a yogurt drink fermented specifically to solve major digestive crises. She also bought me a package of yakult for good measure. With those things, as well as a healthy dose of pancreatic enzymes, prescription-level probiotics, and the rest of my medications for the morning, I recovered. By noon, I was able to finish a meal, and by the evening, I was back to my old self. 

I was still very upset over the whole episode though. I knew most people pack on the calories when making dinner-party dishes, which is why I didn’t want to go to my mom’s friend’s dinner in the first place. That was not the first time the gates of hell unleashed their unholy wrath on my insides. And as long as I continued to join my mom at her social gatherings, that wouldn’t be the last time. It was very apparent that I needed a better plan. Instead of just gritting my teeth and making myself deathly sick, just so I could obey some stupid social obligation that I’m not even sure is an obligation anymore, I needed to grow a pair and actually start being more upfront about my needs. I didn’t need to go into detail when explaining the reasons behind my needs, but I still needed to speak up, or else I’d continue to suffer the consequences. 

Unfortunately, people tend to want to know exactly why I cannot eat their cheesy casseroles and heavily spiced soups, and are almost never satisfied with a simple, "It will make me feel bad". And, you know what they say, curiosity absolutely obliterates the cat sometimes. I'm way too shy and embarrassed by my condition to explain to people I barely know what CF does to me in any sort of detail (however, I am putting that info in this book so people will stop approaching me with all of their intrusive interrogations), and my mom doesn't really know what she's talking about if she tries to illustrate what happens to me. Even though she's my mom and has seen me at my sickest, she still has no idea what it's like to quite literally spew fire and brimstone out of all possible ends at the same time for 10 to 45 minutes straight without stopping, all because I ate a calorie of the wrong thing. So, there will always be misunderstandings and misconceptions about my condition I'm not exactly willing to clarify, especially to squeamish, 40-something-year-old mothers who spend their free time watching romance comedies and reading phony self-help books. 

There are just some things out there people should be perfectly content with not knowing. But, that's not how the average human mind works. There are certain groups of people I'm totally comfortable with opening up to about my worst experiences with Cystic Fibrosis, but my mom's group of friends is not even close to being one of them. Yet, they still insist I tell them what is wrong with me in great detail, and then get very offended when I just let the floodgates break off their hinges. Apparently words like "crap" and "explosive" are not acceptable words to use when explaining the very reason why I shouldn't eat what's served at most dinner parties.

Sometimes, when I haven't been to any interesting dinner party in a long time, my condition just decides to give me the finger, leaving me at a complete loss as to why I got sick. Maybe I took a handful of enzymes that turned out to be duds. Maybe my enzymes digested things just fine but they stopped working prematurely. Maybe I didn't have enough salt in my daily diet and all of the cilia cells in my intestines died for the day. Maybe my body didn't deal with my previous meal completely before I began eating again. Maybe my body just hates me and has to remind me every now and then what it's capable (and incapable) of doing. Whatever the reason may be, it remains a mystery. Cystic Fibrosis is just packed full of fun surprises. 

Despite all of this, I can still find ways to have fun with my severely debilitated digestive tract. I simultaneously have the weakest and strongest stomach out there. A slice of pizza will destroy me for a day, but I can eat all of the rocky mountain oysters and sushi I want and not even feel a little bad from eating it. I need to eat 6,000 calories a day so my body has a chance to absorb some nutrition out of all of it, which has given me a stomach better at holding food than those of professional competitive eaters. I can walk out of a buffet after eating 2,000 calories worth in food and still look skinny as a twig. I'll be hungry no more than 2 hours later, and the cycle continues. 

It's not unusual for me to eat several pounds of food in one meal. Normally, I'll eat two steaks alongside a few bowls of plants and a bowl of brown rice, and I'll wash it all down with a half-gallon of water. I'll repeat this meal up to 6 times in one day, not including snacks. As amazing as this is, it's just part of my survival. If I ate like everyone else, I would've died from malnutrition a very long time ago. In fact, that was one of my first near-death experiences before I was diagnosed with Cystic Fibrosis at two weeks old.

Doctors had no idea why I wasn't digesting my food before my newborn screening tests came back, and if it wasn't for my parents, I would be dead. The doctors wanted to give me a G-tube and just pump another 3,000 calories directly into my stomach everyday, without waiting for my tests to come back, because I was losing over a pound of weight per week and was literally starving to death. My parents refused that for me, saying they just knew it would kill me. Had the doctors gotten their way, my system would've been severely overwhelmed, and I would've died an excruciating death. 

Occasionally, I will break my own eating rules for special reasons. For instance, I was tempted to try the "gallon milk challenge" using four quarts of goat's milk, as that was what I had on hand. Goat's milk is much easier on my system than cow's milk because of its probiotic properties. I actually kept all four quarts of goat's milk down pretty easily, and didn't suffer any real consequences except for an uncomfortably cold stomach for a few minutes after I finished the final quart. If I tried the gallon milk challenge with cow's milk, like you're traditionally supposed to do, then I would've probably had some issues. 

I'll also spend a few bucks on junk food here and there. Most days, I eat very well, but some days I'll cheat and have a few bags of gummy bears. While I do get sick from it, the illness I get from eating a few bags of gummy bears with no enzymes is not nearly as horrendous as the illness I get from eating a heavy meal with enzymes. The enzymes, regardless if they digest my food or not, do slow down the process. If I don't digest anything at all, I might as well skip the middle man and just throw my meals directly into the toilet. But, if I digest just a little bit, everything else has to wait for that little bit of nutrition to be processed. That's why I have a huge jar of prescription-level laxatives hidden under the bathroom sink that will clear me out in 20 minutes flat, guaranteed!