If there's anything I struggle to write, it's my daily life. I know that sounds strange. How hard is it to describe daily life? Well, for me, it's very hard. Almost every other time I've tried describing my life using words, people have gotten very confused. Some think I literally have to wear 60 pounds of gear every morning and evening. Others have thought I have to vape to survive, which they question, and then it ends up confusing both of us because we're on two completely different topics. Whatever it is, there's always a lot of confusion when I try putting my daily life into words, and it's a brick wall I hope to break through one day.
Usually, when I explain to someone what my daily life looks like, I just tell them it takes a couple hours for me to get completely ready for the day, and another hour for me to get ready for bed at night. I also say that throughout the day, I take medications and do things to take care of myself. Of course, this rises up a lot of questions. What do I do that takes an hour or so everyday? What pills do I take? Why do I do so much? Why? What? Why?
It's nothing particularly shocking. It's just very hard to describe what I do to someone who has never seen nor heard of what I do. Even if I show them pictures, or even the devices themselves, people are still insufferably curious and confused at the same time. Usually, after a long time going in circles, I give up trying to explain my daily life. I've thought that some things are best left alone, but yet again, my daily life is... well... my daily life, and is something I need to include in a memoir. It's especially important when my treatments are the things literally keeping me alive. Without them, I would be dead.
The way I've described it before has been the best way I know how. Only, it is very confusing to the outside world. To me, it seems like a sound description, but judging by people's reactions, it's really not.
I know a lot of people are familiar with nebulizers. They're the things people with asthma and allergies will use to breathe in medications, or even just deliver moisture to their airways. I use a little blue air compressor that connects to a nebulizer cup. Inside that cup is medication. I use a variety of different medications. Sometimes they're harsh, sticky, and bitter tasting antibiotics. Sometimes it's Pulmozyme, which is a CF-specific medication that breaks down some of the extra mucus and delivers moisture to my airways. Sometimes I just breathe in saline, which makes some people with CF cough a lot, but for healthier CFers like me, it just moisturizes everything and tastes nice.
Nebulizers vaporize the medication, which is what led my brother Ryder's friend to ask, "If she can do that, why can't I vape around her?"
Ryder spent 10 minutes explaining to his friend that nebulized medication is not like vape smoke at all. While vape smoke can be very harmful to me, nebulized medication saves my life. It eventually clicked, and Ryder's friend was very red in the face. I assured him that while his question was stupid, it wasn't the dumbest thing I've ever been asked. It's natural for clueless and confused people to ask really stupid questions. It's ok to ask such questions, and it always ends up as good joke material for me.
The other treatment I do is called a vest. It's much harder to explain because it's CF specific, and pretty much no one beyond the CF world has heard of or seen a vest. It gets the name "vest" because I wear an inflatable vest to do the treatment. There are two plastic pipes that stick out of the inflatable vest, so it can be inflated. The vest I wear connects to the vest machine with two large tubes, and the vest machine is just a huge bulky box that weighs about 35 pounds (not including the weight of the tubes and the cords). The vest machine rapidly pumps air into the inflatable vest, making it shake around. This shaking shakes my body, which shakes my lungs to break up the stuff inside them, so I can cough the stuff out. The vest runs about a half-hour per session, and I do one session in the morning and one session in the evening.
I rarely cough anything up, which is a very good sign. It means my lungs are actually quite clear. I still do the vest everyday, unless I'm doing activities that simulate the vest for a long time. Trotting/cantering a horse does pretty much exactly what the vest does. Riding my dirtbike over a series of potholes and rocks also simulates the vest.
The vest makes talking hard for me. Only people who are used to me doing the vest around them can understand me, since my voice rapidly cuts in and out due to the shaking. I don't like doing the vest (or any other treatment for that matter) around people who don't know me very well. People like that tend to be overly curious, but they can't understand my answers to their questions until my vest treatment is over. Sometimes people just have to poke and prod at the vest. While the vest is basically indestructible and I know how to reset the settings, I still get really irritated when people try messing with it while I'm doing it. Luckily, people understand what the "death glare" means and back off pretty quickly.
When I travel, I don't mind doing my vest in the hotel room with close family, or in the living room with family members I know very well. In Minnesota, no one bats an eye. My family there is used to the unusual. They're so used to it, that the usual is unusual to them. No one awkwardly stares at me while I'm doing my treatments, or gets uncomfortably close to me while I'm stuck to a 40 pound machine for a half-hour. Sometimes I purposefully lean against the table to mildly irritate my family members, but otherwise everyone pretty much ignores it. Sometimes my family uses my vest machine like a mini table. I don't mind them using it to set down their their drinks and/or newspapers, especially since I set down my own drinks and stuff on it sometimes, but I do mind when they use it as a footrest for their gross, sweaty feet. I'm glad disinfectant wipes are a thing.
It's different when I go see family in Seattle or North Dakota. I'm not as close to those family members, and those family members aren't so used to unusual illness like the family in Minnesota is. They didn't have grandpa Bob to take care of, unlike family in Minnesota. And they certainly didn't have someone as screwed up as me to take care of. My great-aunt-in-law has some health issues, and she takes care of her sister who has some mental problems, but none of those issues equate to mine.
My great-aunt tends to overshare her illnesses and medical experiences with me, thinking that because I'm so used to medical issues, I would be a great person to talk to about it. Unfortunately for her, just because I have CF, it doesn't mean I'm an expert in the whole medical field. And I really don't like to talk about it as deeply as my aunt has asked me to in the past. I only talk about it that deeply with people who have lived through it with me. I love my great-aunt, but she wasn't there to see what I went through, and her back problems and her sister's needs aren't anything like what I have.
Many of my family members in North Dakota and Seattle are afraid to touch my treatments. They think they're very fragile and will break very easily. Like I said before, my vest machine is basically indestructible. I've had it for almost 14 years now. I've blown the wires inside it twice, taken it all over the world, and toss it around in its bag like a bale of hay. I use it as a seat sometimes, and usually set my drinks down on it when it's not turned on. I would say if it's very fragile, and I tell them it's ok to move it around without my permission, as long as they tell me where they put it. But, of course, they aren't sure what to do with it, and are way more protective of it than I am, so I know it won't move unless either me or my mom moves it.
My younger cousins in Seattle are actually afraid of my vest. It's loud, big, and definitely strange, so I don't feel bad when my younger Seattle cousins hide behind my aunts' and uncles' backs, or just avoid the room I'm in completely. Little kids aren't very fond of the big and loud unless they were raised around it. Dogs are also afraid of my treatments, unless they're my own, and are used to the unusual.
In North Dakota, I'm lucky enough to have a whole house to myself when I'm doing my treatments. My grandparents are used to it, so they usually ignore it. But my great aunts and uncles aren't exactly sure how to react, and usually go to my grandparents to ask questions about it, since they can't understand me while I'm hooked up.
They've dealt with serious illnesses in their life too. Family members I've never met have been afflicted with serious and deadly diseases. But, I'm a survivor, and I also have way more treatments and pills than those distant relatives I never got to know. My great aunts and uncles there respect my space. I have my own little designated corner at the dining table in the old farmhouse, which is never disturbed while I'm staying there.
When family comes down to visit, it sometimes gets interesting. At Clarke's house, I don't really have my own space unless the upstairs roommates are traveling. My little brother's siblings often come down from Canada to visit. I pretty much grew up with Ryder and Hannah, especially since my little brother is their little brother too. They're used to my daily life like most of my close family is, since they were raised around it for many years.
Sometimes, they take advantage of the fact that I'm stuck to 40 pounds of machinery and can't easily get away. Sure, I can disconnect myself whenever I want, but it still takes a few seconds to pause the machine and unhook the tubes connecting me to the machine. Ryder especially likes to mess with me.
He knows how to push my buttons. I'm very wary of him when he walks by me while I'm doing my treatments. He does everything from the mildly irritating, to the downright infuriating. I always keep a can of air freshener and a good pair of shoes nearby while I'm doing treatments around my Canadian siblings. It turns out I'm a decent aim with the shoes. I don't throw them very hard, but I throw hard enough with a good aim. It's enough to deter Ryder a little bit, especially since he knows what I'll aim the shoes at if he messes with me too much, but sometimes he thinks it's worth the risk.
Ryder's girlfriend had an interesting reaction to my daily life. She completely avoided me while I was doing my treatments, and pretended she didn't see me when I was doing them. I thought it was strange, but she's also very shy, so I assumed her shyness had something to do with it. It turns out she kept Ryder up one night asking him a whole slew of questions about me. She was scared to ask me for fear of "offending" me, so she hoped Ryder could answer them. I later talked to her through social media and cleared things up for her. She'll likely be more relaxed when we meet up again, especially since she saw some of the annoying things Ryder did to me even when I was doing my treatments.
It's ok to ask me questions. I encourage people to be curious about my disease so they know what it is. Unfortunately, people don't ask questions because they're afraid of asking the wrong thing. As long as you don't ask super specific and uncomfortable questions like my great-aunt often does, I'm perfectly happy to answer them.
I'm not fragile at all, and neither are my treatments. My treatments aren't usually painful, and they're not strange to me either. Doing my treatments is as natural as eating is to me. It's just one of the many ways I stay alive.
Cystic Fibrosis is a huge part of my life, even if I don't exactly like that truth. It's not the only thing that makes me interesting, but because I have something that less than 46,200 people in the world have, I definitely have a unique lifestyle almost no one knows about.
That's what makes discussing my daily life so difficult. I'm not sure if what I described above answered some of the questions or even gave an accurate description of my daily treatments, but it's my life and how I have to live it. It's so rare that people can't just picture it. They can picture an electric wheelchair or an inhaler, but I'm not sure if people can picture what I do everyday to stay alive.
Sometimes, people only understand when they see it. But even when people see me doing my treatments, they have no idea what to do with it. They can't fit it into their minds. Not even my own parents know what it's like to wear the vest. As a little girl, they'd sit me in their laps while I did it sometimes, and these days, sometimes family sits next to me on the couch, but they still don't know what it feels like to be surrounded by it.
It's weird to think about it that way, but it's true. People can't understand the things I think are as normal as driving or eating dinner. People tell me they couldn't imagine how hard my life is, having to do treatments that look painful, and taking more pills than I can count. To me, it's just life. It may be hard, but it's all I've ever known, so I don't notice how hard it is.
I only realize how unusual it is when I start attempting to describe my daily life, and usually fail. Not many words can describe what I do. People just have to see it to grasp the basics. Unless they have CF, they will never wear the vest. And unless they know someone with CF, they will never see the vest. In some ways, that is actually a pretty neat thought. I do something everyday less than 0.000001% of the world's population ever does in their lifetime. How epic is that?
